Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Hi Bernadette,It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too "high risk" ? Is that legal?I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differentlyIf your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away.You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it.I pray you find some relief for your daughter soon. To: Soundsensitivity Sent: Tuesday, December 13, 2011 7:42 AM Subject: I am so sad!! My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Hi Bernadette,It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too "high risk" ? Is that legal?I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differentlyIf your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away.You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it.I pray you find some relief for your daughter soon. To: Soundsensitivity Sent: Tuesday, December 13, 2011 7:42 AM Subject: I am so sad!! My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too " high risk " ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me, " boy you irritate alot of people in your family. " I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too " high risk " ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me, " boy you irritate alot of people in your family. " I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too " high risk " ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me, " boy you irritate alot of people in your family. " I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Bernadette - my heart goes out to you. I have a 13 year old son suffering from this 4S too - although not as extreme as your daughter from what you describe. He does too get very anxious about the thought of going into a situation where there will be trigger noises - and sometimes - they are not nearly as bad as he anticipates....but for the most part - he uses avoidance.Have you tried to contact Marsha (the founder of this group) for any guidance she may offer? Maybe she can recommend other dr's that she knows are familiar w/miso & 4S.Best of luck - to your daughter, you and your family.On Dec 13, 2011, at 12:17 PM, wouldlovetofindacurefor4s wrote: Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too "high risk" ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Bernadette - my heart goes out to you. I have a 13 year old son suffering from this 4S too - although not as extreme as your daughter from what you describe. He does too get very anxious about the thought of going into a situation where there will be trigger noises - and sometimes - they are not nearly as bad as he anticipates....but for the most part - he uses avoidance.Have you tried to contact Marsha (the founder of this group) for any guidance she may offer? Maybe she can recommend other dr's that she knows are familiar w/miso & 4S.Best of luck - to your daughter, you and your family.On Dec 13, 2011, at 12:17 PM, wouldlovetofindacurefor4s wrote: Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too "high risk" ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you so much, . I tried to contact Dr. once. I was on the phone all day again contacting new doctors and leaving messages. My daughter's medical doctor is also trying to help me. She also can not believe they would just leave her out in the cold. It's been such a long hard road for my daughter and her life is only beginning. She fears the future and getting worse. I almost think we do better as a family just trying methods on our own without the professional help. They still.. just make us feel like we are crazy. I am so glad my daughter was not at the meeting last night with this new doctor. I left feeling much worse. I have worked so hard to try and help my daughter and always said I would never give up on her. I have always been the strong for her. Today is not one of my positive days but this message board is helping me gain back the fight I need to help her. For that I am so grateful. > > > > > > Hi Bernadette, > > > It sounds to me like you are getting some very bad professional help. > > I am shocked! that doctors are turning her away because she is too " high > > risk " ? Is that legal? > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > transitioning onto some medications. It has to do with the serotonin as > > I understand it, I am very sensitive to serotonin. (this is a real > > oversimplication of the chemical problem I am sure). People who are > > sensitive to serotonin can also experience an increase anxiety instead > > of a decrease with the medication. After a bad episode with the drug > > effexor, my Doctor put me on an older medication, a tricyclic > > anti-depressant, which were the type of antidepressants used before the > > SSRIs came out. It has less of an effect on serotonin which is why I > > could tolerate it better. If you wean her off the meds she is on now, I > > would suggest going very very slowly down on the dosages, I used to even > > split pills into little fragments. My doctor said I have a very reactive > > system, the doctor before him did not believe this was > > possible(obviously it was and is) I am now on a SSRI called Celexa, > > which has a much > > > more selective action on the serotonin probably why I don't have the > > side effects of suicidal thoughts or anxiety. Of course everyone reacts > > to the drugs differently > > > > > > > > > If your daughter does go back onto a new med, I would suggest doing it > > very very slowly, now that I understand how sensitive I am to serotonin, > > I understand why I sometimes initially feel worse transitioning onto a > > med, and tell myself it will eventually go away once I adjust, which it > > usually does. If it doesn't go away or it is way to strong of a > > reaction, then it is not the drug for me and I have to tell the doctor > > right away. > > > > > > You are such a great mother for listening and believing your daughter > > when the doctors are telling you otherwise. I hope you can find a > > doctor who is a better fit or a therapist who is willing to work with > > your daughter without her being medicated, if medication is only making > > her worse. Maybe insisting that the current or next doctor/therapist > > speak to Dr. , will help plead your case. > > > > > > I am only sharing my own experience as a patient here, so please do > > not take anything i say as medical advice for your daughter. I know how > > frustating it is trying to find treatment for this what can be a very > > incapacitating sound sensitivity. > > > > > > I do have the problem with crashing after stressful times. though > > since my moods have been stablizied on medication, it is less of a > > problem for me, this probably has more to do with an underlying mood > > disorder in my case. I do permit myself to have time to decompress in > > solitude rather than trying to force myself to go until I crash. For > > example I can't go from family/friends holiday event to event to event. > > I just have to insist on staying at home alone with a good book > > sometimes, even if people give me flack for it. > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > ________________________________ > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > To: Soundsensitivity > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > Subject: I am so sad!! > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > > have written my story about my > > > daughter who is now 14 before on this site. Wow things keep changing > > so rapidly. As of last November 2010 she no longer goes to school. > > While talking to my daughter with the tv on, the Today Show story came > > on and we couldn't believe it. We both watched in tears. Since then > > she has really > > > tried to stop isolating herself which she was doing daily. She was > > just living > > > in her bed and wouldn't come out. After the Today show, she got the > > courage to > > > start to go out a little more with some friends. She started tutering > > and her quality of life > > > started to improve. Anyway she also agreed to go back to counseling. > > She finally found a therapist she really liked. They also made her see > > a psychiatrist in the > > > same practice. The doctor wanted to start my daughter back on meds > > for her anxiety. Well > > > my daughter agreed and after 3 weeks on the medicine she felt like she > > wanted to > > > kill herself. We put her in the hospital to wean her off but to keep > > her there > > > they said she had to be put back on medicine otherwise insurance > > wouldn't cover > > > it. (which we finally got because she was always denied insurance) > > Anyway she > > > started a new med and now the place where she goes to therapy and > > really likes, > > > has refused to take her back. They said she is too high risk. Who do > > therapists > > > help?...people who bite their nails? She needs help and they are > > denying > > > her to return. So she is coming out of the hospital on meds and I > > have to start all over > > > again looking for help. They are the ones that started her on > > medicine!! She > > > is that percent of people who get suicidal thoughts when on > > antidepressants. > > > I am so sad for her, She has seen soooooo many doctors and has been > > laughed at > > > by so many and has been asked never to return by 3. You would not > > believe what they have said to her this time too. Two > > > doctors at the hospital asked if she was doing this for attention. > > When I told the doctor at the hospital she called > > > me to come home from work because she said the medicine was giving her > > the > > > courage to kill herself..... the doctor said that it sounded too > > textbook and that > > > there was no way she said that herself. I told him, why would she lie > > about how > > > she feels?? On the plus side the medicine gave her the courage to eat > > with me > > > for the first time in about 4 or 5 years. Anyway my daughter is so > > strong and I > > > am so proud of her. Here is my question for all of you. This was her > > pattern > > > even not on meds....My daughter stresses out so much about events she > > has to attend (if > > > she has the courage to leave the house and go) but it takes sooo much > > courage that she crashes the > > > very next day for days or weeks. Does this happen to anyone > > else?...where you > > > hold it together so well that you crash immediately after?? (I wrote > > up to this part the other day) Well they released her out of the > > hospital yesterday. My husband and I went to meet with another Doctor > > who specializes in DBT last night. Anyway it was horrific!!!!!! She > > did not believe any word we said, she couldn't believe my daughter > > doesn't eat with me. She also said that the people who appeared on the > > today show might have had other motives like money. I was like, > > WHAT????? She also said to me, " boy you irritate alot of people in your > > family. " I said I would never give up on my daughter but OMG all the > > professionals I have met frustrate me so much. I feel so sorry for my > > daughter and all of you who suffer with this. I can't find any help out > > there. They sent her home on meds but now I can't find a doctor who > > wants to see her because they said she is high risk and they don't know > > how to help her. She only has 30 days of > > > medicine then what? I have to wean her off myself without help > > because no one wants to see her. I am so sad. I don't even know if > > this makes any sense but I had to vent...because no one else will > > believe us or help us. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you so much, . I tried to contact Dr. once. I was on the phone all day again contacting new doctors and leaving messages. My daughter's medical doctor is also trying to help me. She also can not believe they would just leave her out in the cold. It's been such a long hard road for my daughter and her life is only beginning. She fears the future and getting worse. I almost think we do better as a family just trying methods on our own without the professional help. They still.. just make us feel like we are crazy. I am so glad my daughter was not at the meeting last night with this new doctor. I left feeling much worse. I have worked so hard to try and help my daughter and always said I would never give up on her. I have always been the strong for her. Today is not one of my positive days but this message board is helping me gain back the fight I need to help her. For that I am so grateful. > > > > > > Hi Bernadette, > > > It sounds to me like you are getting some very bad professional help. > > I am shocked! that doctors are turning her away because she is too " high > > risk " ? Is that legal? > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > transitioning onto some medications. It has to do with the serotonin as > > I understand it, I am very sensitive to serotonin. (this is a real > > oversimplication of the chemical problem I am sure). People who are > > sensitive to serotonin can also experience an increase anxiety instead > > of a decrease with the medication. After a bad episode with the drug > > effexor, my Doctor put me on an older medication, a tricyclic > > anti-depressant, which were the type of antidepressants used before the > > SSRIs came out. It has less of an effect on serotonin which is why I > > could tolerate it better. If you wean her off the meds she is on now, I > > would suggest going very very slowly down on the dosages, I used to even > > split pills into little fragments. My doctor said I have a very reactive > > system, the doctor before him did not believe this was > > possible(obviously it was and is) I am now on a SSRI called Celexa, > > which has a much > > > more selective action on the serotonin probably why I don't have the > > side effects of suicidal thoughts or anxiety. Of course everyone reacts > > to the drugs differently > > > > > > > > > If your daughter does go back onto a new med, I would suggest doing it > > very very slowly, now that I understand how sensitive I am to serotonin, > > I understand why I sometimes initially feel worse transitioning onto a > > med, and tell myself it will eventually go away once I adjust, which it > > usually does. If it doesn't go away or it is way to strong of a > > reaction, then it is not the drug for me and I have to tell the doctor > > right away. > > > > > > You are such a great mother for listening and believing your daughter > > when the doctors are telling you otherwise. I hope you can find a > > doctor who is a better fit or a therapist who is willing to work with > > your daughter without her being medicated, if medication is only making > > her worse. Maybe insisting that the current or next doctor/therapist > > speak to Dr. , will help plead your case. > > > > > > I am only sharing my own experience as a patient here, so please do > > not take anything i say as medical advice for your daughter. I know how > > frustating it is trying to find treatment for this what can be a very > > incapacitating sound sensitivity. > > > > > > I do have the problem with crashing after stressful times. though > > since my moods have been stablizied on medication, it is less of a > > problem for me, this probably has more to do with an underlying mood > > disorder in my case. I do permit myself to have time to decompress in > > solitude rather than trying to force myself to go until I crash. For > > example I can't go from family/friends holiday event to event to event. > > I just have to insist on staying at home alone with a good book > > sometimes, even if people give me flack for it. > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > ________________________________ > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > To: Soundsensitivity > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > Subject: I am so sad!! > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > > have written my story about my > > > daughter who is now 14 before on this site. Wow things keep changing > > so rapidly. As of last November 2010 she no longer goes to school. > > While talking to my daughter with the tv on, the Today Show story came > > on and we couldn't believe it. We both watched in tears. Since then > > she has really > > > tried to stop isolating herself which she was doing daily. She was > > just living > > > in her bed and wouldn't come out. After the Today show, she got the > > courage to > > > start to go out a little more with some friends. She started tutering > > and her quality of life > > > started to improve. Anyway she also agreed to go back to counseling. > > She finally found a therapist she really liked. They also made her see > > a psychiatrist in the > > > same practice. The doctor wanted to start my daughter back on meds > > for her anxiety. Well > > > my daughter agreed and after 3 weeks on the medicine she felt like she > > wanted to > > > kill herself. We put her in the hospital to wean her off but to keep > > her there > > > they said she had to be put back on medicine otherwise insurance > > wouldn't cover > > > it. (which we finally got because she was always denied insurance) > > Anyway she > > > started a new med and now the place where she goes to therapy and > > really likes, > > > has refused to take her back. They said she is too high risk. Who do > > therapists > > > help?...people who bite their nails? She needs help and they are > > denying > > > her to return. So she is coming out of the hospital on meds and I > > have to start all over > > > again looking for help. They are the ones that started her on > > medicine!! She > > > is that percent of people who get suicidal thoughts when on > > antidepressants. > > > I am so sad for her, She has seen soooooo many doctors and has been > > laughed at > > > by so many and has been asked never to return by 3. You would not > > believe what they have said to her this time too. Two > > > doctors at the hospital asked if she was doing this for attention. > > When I told the doctor at the hospital she called > > > me to come home from work because she said the medicine was giving her > > the > > > courage to kill herself..... the doctor said that it sounded too > > textbook and that > > > there was no way she said that herself. I told him, why would she lie > > about how > > > she feels?? On the plus side the medicine gave her the courage to eat > > with me > > > for the first time in about 4 or 5 years. Anyway my daughter is so > > strong and I > > > am so proud of her. Here is my question for all of you. This was her > > pattern > > > even not on meds....My daughter stresses out so much about events she > > has to attend (if > > > she has the courage to leave the house and go) but it takes sooo much > > courage that she crashes the > > > very next day for days or weeks. Does this happen to anyone > > else?...where you > > > hold it together so well that you crash immediately after?? (I wrote > > up to this part the other day) Well they released her out of the > > hospital yesterday. My husband and I went to meet with another Doctor > > who specializes in DBT last night. Anyway it was horrific!!!!!! She > > did not believe any word we said, she couldn't believe my daughter > > doesn't eat with me. She also said that the people who appeared on the > > today show might have had other motives like money. I was like, > > WHAT????? She also said to me, " boy you irritate alot of people in your > > family. " I said I would never give up on my daughter but OMG all the > > professionals I have met frustrate me so much. I feel so sorry for my > > daughter and all of you who suffer with this. I can't find any help out > > there. They sent her home on meds but now I can't find a doctor who > > wants to see her because they said she is high risk and they don't know > > how to help her. She only has 30 days of > > > medicine then what? I have to wean her off myself without help > > because no one wants to see her. I am so sad. I don't even know if > > this makes any sense but I had to vent...because no one else will > > believe us or help us. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 I can not believe how the doctor's are handling this. Obviously, your daughter is in pain. I would keep calling every doctor and explain the situation until you get a doctor that knows their profession. If a doctor turns her away because "she is faking it" they do not deserve to be practicing, at all... To: Soundsensitivity Sent: Tue, December 13, 2011 7:42:02 AMSubject: I am so sad!! My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Hi Bernadette, My son, who is now 29, has had similar experiences to yours. When he was younger, around the age your daughter is now, we saw many doctors and I swear both my son and I are more intelligent than the doctors we saw. Most were ignorant and just repeated what they had heard from other “professionals” or read, instead of doing any true research on their own, plus my son ( & I) could completely see through any mind games they tried to use to get him to reveal what they thought he was thinking, instead of trying to find out what he was really thinking or feeling or experiencing. He was also hospitalized for a while and they accomplished exactly nothing (details are too long to go into – this is already long enough!). I actually accomplished more with my son on our own after he was back home. The doctors at the hospital also put him on prozac and he did attempt suicide about a month later, however he is also the one who called 911 after getting scared about his attempt, and then they called me (at work). I only tell you these stories to let you know someone can relate somewhat to what you’ve been going through, however, as frustrating and discouraging as all those experiences have been, there are good doctors and others out there who can and will help. It does take a lot of perseverance and “fight” on the part of the parents to get the right treatment for our kids, sometimes a lot of “fighting” for what’s fair and right (and legally required), but your daughter will see you doing all you can to make her life better and just that alone is huge. My son has not been on any medication for many years now – he said the tradeoff of dealing with side effects versus taking the edge of anxiety, isn’t worth it for him, however it’s very different for different meds and different people. One thing though is that the doctor who prescribed the meds your daughter is on now, if he won’t continue to see her, then he is being legally/medical irresponsible, if nothing else, just to see that she can come off of those meds safely. She is still taking meds that he prescribed, so he is still responsible for monitoring her and her medical safety. What I’ve done in the past is, first of all, is put everything in writing. I’ve written letters documenting everything, including legal concerns, and then show at the bottom of the letter that I’ve copied an attorney. Just mention that the doctor is refusing to see your daughter and therefore is, in effect, also refusing to monitor your daughter while she’s on the meds he prescribed, or even trying to help her safely stop taking them. That might motivate him to at least find another doctor who will see your daughter to take over monitoring her medically while on or going off of the meds. Meanwhile, it sounds like your daughter’s medical doctor is understanding and may also be helpful in finding someone. (My son’s medical doctor/pediatrician was always very helpful and supportive). My heart goes out to you and your daughter for all you’re going through. Just keep in mind that your daughter is watching and appreciating all that you are doing to support her and to find help for her and that means so much to her. Hugs to you both. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of wouldlovetofindacurefor4sSent: Tuesday, December 13, 2011 12:50 PMTo: Soundsensitivity Subject: Re: I am so sad!! Thank you so much, . I tried to contact Dr. once. I wason the phone all day again contacting new doctors and leaving messages.My daughter's medical doctor is also trying to help me. She also cannot believe they would just leave her out in the cold. It's been sucha long hard road for my daughter and her life is only beginning. Shefears the future and getting worse. I almost think we do better as afamily just trying methods on our own without the professional help. They still.. just make us feel like we are crazy. I am so glad mydaughter was not at the meeting last night with this new doctor. I leftfeeling much worse. I have worked so hard to try and help my daughterand always said I would never give up on her. I have always been thestrong for her. Today is not one of my positive days but this messageboard is helping me gain back the fight I need to help her. For that Iam so grateful.> > >> > > Hi Bernadette,> > > It sounds to me like you are getting some very bad professionalhelp.> > I am shocked! that doctors are turning her away because she is too " high> > risk " ? Is that legal?> > >> > >> > > I am one in the minority who can get suicidal thoughts while> > transitioning onto some medications. It has to do with the serotoninas> > I understand it, I am very sensitive to serotonin. (this is a real> > oversimplication of the chemical problem I am sure). People who are> > sensitive to serotonin can also experience an increase anxietyinstead> > of a decrease with the medication. After a bad episode with the drug> > effexor, my Doctor put me on an older medication, a tricyclic> > anti-depressant, which were the type of antidepressants used beforethe> > SSRIs came out. It has less of an effect on serotonin which is why I> > could tolerate it better. If you wean her off the meds she is onnow, I> > would suggest going very very slowly down on the dosages, I used toeven> > split pills into little fragments. My doctor said I have a veryreactive> > system, the doctor before him did not believe this was> > possible(obviously it was and is) I am now on a SSRI called Celexa,> > which has a much> > > more selective action on the serotonin probably why I don't havethe> > side effects of suicidal thoughts or anxiety. Of course everyonereacts> > to the drugs differently> > >> > >> > > If your daughter does go back onto a new med, I would suggestdoing it> > very very slowly, now that I understand how sensitive I am toserotonin,> > I understand why I sometimes initially feel worse transitioning ontoa> > med, and tell myself it will eventually go away once I adjust, whichit> > usually does. If it doesn't go away or it is way to strong of a> > reaction, then it is not the drug for me and I have to tell thedoctor> > right away.> > >> > > You are such a great mother for listening and believing yourdaughter> > when the doctors are telling you otherwise. I hope you can find a> > doctor who is a better fit or a therapist who is willing to workwith> > your daughter without her being medicated, if medication is onlymaking> > her worse. Maybe insisting that the current or next doctor/therapist> > speak to Dr. , will help plead your case.> > >> > > I am only sharing my own experience as a patient here, so pleasedo> > not take anything i say as medical advice for your daughter. I knowhow> > frustating it is trying to find treatment for this what can be avery> > incapacitating sound sensitivity.> > >> > > I do have the problem with crashing after stressful times. though> > since my moods have been stablizied on medication, it is less of a> > problem for me, this probably has more to do with an underlying mood> > disorder in my case. I do permit myself to have time to decompressin> > solitude rather than trying to force myself to go until I crash. For> > example I can't go from family/friends holiday event to event toevent.> > I just have to insist on staying at home alone with a good book> > sometimes, even if people give me flack for it.> > >> > > I pray you find some relief for your daughter soon.> > >> > >> > >> > > ________________________________> > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@> > > To: Soundsensitivity > > > Sent: Tuesday, December 13, 2011 7:42 AM> > > Subject: I am so sad!!> > >> > >> > >> > > My name is Bernadette. I have been a member now for over a year. I> > have written my story about my> > > daughter who is now 14 before on this site. Wow things keepchanging> > so rapidly. As of last November 2010 she no longer goes to school.> > While talking to my daughter with the tv on, the Today Show storycame> > on and we couldn't believe it. We both watched in tears. Since then> > she has really> > > tried to stop isolating herself which she was doing daily. She was> > just living> > > in her bed and wouldn't come out. After the Today show, she gotthe> > courage to> > > start to go out a little more with some friends. She startedtutering> > and her quality of life> > > started to improve. Anyway she also agreed to go back tocounseling.> > She finally found a therapist she really liked. They also made hersee> > a psychiatrist in the> > > same practice. The doctor wanted to start my daughter back on meds> > for her anxiety. Well> > > my daughter agreed and after 3 weeks on the medicine she felt likeshe> > wanted to> > > kill herself. We put her in the hospital to wean her off but tokeep> > her there> > > they said she had to be put back on medicine otherwise insurance> > wouldn't cover> > > it. (which we finally got because she was always denied insurance)> > Anyway she> > > started a new med and now the place where she goes to therapy and> > really likes,> > > has refused to take her back. They said she is too high risk. Whodo> > therapists> > > help?...people who bite their nails? She needs help and they are> > denying> > > her to return. So she is coming out of the hospital on meds and I> > have to start all over> > > again looking for help. They are the ones that started her on> > medicine!! She> > > is that percent of people who get suicidal thoughts when on> > antidepressants.> > > I am so sad for her, She has seen soooooo many doctors and hasbeen> > laughed at> > > by so many and has been asked never to return by 3. You would not> > believe what they have said to her this time too. Two> > > doctors at the hospital asked if she was doing this for attention.> > When I told the doctor at the hospital she called> > > me to come home from work because she said the medicine was givingher> > the> > > courage to kill herself..... the doctor said that it sounded too> > textbook and that> > > there was no way she said that herself. I told him, why would shelie> > about how> > > she feels?? On the plus side the medicine gave her the courage toeat> > with me> > > for the first time in about 4 or 5 years. Anyway my daughter is so> > strong and I> > > am so proud of her. Here is my question for all of you. This washer> > pattern> > > even not on meds....My daughter stresses out so much about eventsshe> > has to attend (if> > > she has the courage to leave the house and go) but it takes sooomuch> > courage that she crashes the> > > very next day for days or weeks. Does this happen to anyone> > else?...where you> > > hold it together so well that you crash immediately after?? (Iwrote> > up to this part the other day) Well they released her out of the> > hospital yesterday. My husband and I went to meet with anotherDoctor> > who specializes in DBT last night. Anyway it was horrific!!!!!! She> > did not believe any word we said, she couldn't believe my daughter> > doesn't eat with me. She also said that the people who appeared onthe> > today show might have had other motives like money. I was like,> > WHAT????? She also said to me, " boy you irritate alot of people inyour> > family. " I said I would never give up on my daughter but OMG all the> > professionals I have met frustrate me so much. I feel so sorry formy> > daughter and all of you who suffer with this. I can't find any helpout> > there. They sent her home on meds but now I can't find a doctor who> > wants to see her because they said she is high risk and they don'tknow> > how to help her. She only has 30 days of> > > medicine then what? I have to wean her off myself without help> > because no one wants to see her. I am so sad. I don't even know if> > this makes any sense but I had to vent...because no one else will> > believe us or help us.> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Bernadette,Oh my goodness that is so horrifying. I started reading this thinking there would be a good ending here but it has all gone so terribly wrong. I wish I knew hwo to make this better. Where area you, what city? Maybe someone here can give you a referral. This is just so not acceptable and you and your daughter do not deserve this. I just want to say I'm terribly sorry and giving you a big cyber hug. Stay strong and keep fighting for her, there just has to be a doctor out there who can help at least wean her off this medicine.HeidiOn Dec 13, 2011, at 5:42 AM, wouldlovetofindacurefor4s wrote: My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Thank you all for your hugs and support. your story is identical to mine. My daughter did try to overdose 2 years ago exactly 3 weeks after starting lexapro. It's been 2 years that I refused meds for her. So again after 3 weeks on prozac the thoughts came back. I too, feel I help her more than any professional. I have been fighting for her since the 3rd/4th grade. I was the only one who believed there was a reason for her behavior while EVERYONE told me she was just trying to control me and my family. I have explained to hundreds that something else was going on. I knew in my heart it was something else. I saw it in her face and body, the fear, panic and rage. She always said, it felt like something or someone else was taking over her body and she had no control over it. After the rage came the depression and guilt for I am her biggest trigger. We also can see right through the doctor's games and can tell right away they are not going to help. In the very early stages of this, they made my husband and I go to therapy basically to learn how to parent and punish her. I would go back each week angry myself saying this isn't the problem, it's not our parenting. Whatever we did as parents would not change the fact that when I coughed she would go into a rage. We discontinued that therapist. She had no clue and I would bring in articles and they never took me serious ever. We have come a long way since those days and for that I am so grateful. I have learn how to fight and have been fighting but today I feel like I am losing the battle. The therapist did call back today and told me my daughter's case was officially closed as of last Friday. I am still completely in shock and baffled. I feel rejected myself. They did say they would call places for me too. I have told all involved how completely shocked and disappointed I am. I am not holding back any of my thoughts. I am giving everyone a piece of my mind. The one thing this condition has done is make me and my daughter stronger. I feel like I can conquer the world on most days. I was on Facebook the other day and I wanted to scream when I read someone's status that read " Just returned home from dress shopping with my 13 year old daughter....boy do I need a drink. " I thought, lady come to my house for a day. Thank you all for giving me my strength back and courage to keep fighting. You all have made my day so much easier and I am forever grateful for that. you are absolutely right, I have to put more in writing, I haven't been as great with that. I do have most though and you can be sure I am writing a letter about this. Yes you are right her medical doctor has been very understanding and so has her school. I got the most support from the school. Last year they were amazing and went over and above trying to help my daughter. They bent over backwards for her because they knew her and wanted to help her in anyway they could. They knew how great she is and couldn't believe how she was succeeding in school while going through all this. But like I said, she no longer goes and is in a tutoring program only 2 hours a day. > > > > > > > > Hi Bernadette, > > > > It sounds to me like you are getting some very bad professional > help. > > > I am shocked! that doctors are turning her away because she is too > " high > > > risk " ? Is that legal? > > > > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > > transitioning onto some medications. It has to do with the serotonin > as > > > I understand it, I am very sensitive to serotonin. (this is a real > > > oversimplication of the chemical problem I am sure). People who are > > > sensitive to serotonin can also experience an increase anxiety > instead > > > of a decrease with the medication. After a bad episode with the drug > > > effexor, my Doctor put me on an older medication, a tricyclic > > > anti-depressant, which were the type of antidepressants used before > the > > > SSRIs came out. It has less of an effect on serotonin which is why I > > > could tolerate it better. If you wean her off the meds she is on > now, I > > > would suggest going very very slowly down on the dosages, I used to > even > > > split pills into little fragments. My doctor said I have a very > reactive > > > system, the doctor before him did not believe this was > > > possible(obviously it was and is) I am now on a SSRI called Celexa, > > > which has a much > > > > more selective action on the serotonin probably why I don't have > the > > > side effects of suicidal thoughts or anxiety. Of course everyone > reacts > > > to the drugs differently > > > > > > > > > > > > If your daughter does go back onto a new med, I would suggest > doing it > > > very very slowly, now that I understand how sensitive I am to > serotonin, > > > I understand why I sometimes initially feel worse transitioning onto > a > > > med, and tell myself it will eventually go away once I adjust, which > it > > > usually does. If it doesn't go away or it is way to strong of a > > > reaction, then it is not the drug for me and I have to tell the > doctor > > > right away. > > > > > > > > You are such a great mother for listening and believing your > daughter > > > when the doctors are telling you otherwise. I hope you can find a > > > doctor who is a better fit or a therapist who is willing to work > with > > > your daughter without her being medicated, if medication is only > making > > > her worse. Maybe insisting that the current or next doctor/therapist > > > speak to Dr. , will help plead your case. > > > > > > > > I am only sharing my own experience as a patient here, so please > do > > > not take anything i say as medical advice for your daughter. I know > how > > > frustating it is trying to find treatment for this what can be a > very > > > incapacitating sound sensitivity. > > > > > > > > I do have the problem with crashing after stressful times. though > > > since my moods have been stablizied on medication, it is less of a > > > problem for me, this probably has more to do with an underlying mood > > > disorder in my case. I do permit myself to have time to decompress > in > > > solitude rather than trying to force myself to go until I crash. For > > > example I can't go from family/friends holiday event to event to > event. > > > I just have to insist on staying at home alone with a good book > > > sometimes, even if people give me flack for it. > > > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > > > > > ________________________________ > > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > > To: Soundsensitivity > <mailto:Soundsensitivity%40yahoogroups.com> > > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > > Subject: I am so sad!! > > > > > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > > > have written my story about my > > > > daughter who is now 14 before on this site. Wow things keep > changing > > > so rapidly. As of last November 2010 she no longer goes to school. > > > While talking to my daughter with the tv on, the Today Show story > came > > > on and we couldn't believe it. We both watched in tears. Since then > > > she has really > > > > tried to stop isolating herself which she was doing daily. She was > > > just living > > > > in her bed and wouldn't come out. After the Today show, she got > the > > > courage to > > > > start to go out a little more with some friends. She started > tutering > > > and her quality of life > > > > started to improve. Anyway she also agreed to go back to > counseling. > > > She finally found a therapist she really liked. They also made her > see > > > a psychiatrist in the > > > > same practice. The doctor wanted to start my daughter back on meds > > > for her anxiety. Well > > > > my daughter agreed and after 3 weeks on the medicine she felt like > she > > > wanted to > > > > kill herself. We put her in the hospital to wean her off but to > keep > > > her there > > > > they said she had to be put back on medicine otherwise insurance > > > wouldn't cover > > > > it. (which we finally got because she was always denied insurance) > > > Anyway she > > > > started a new med and now the place where she goes to therapy and > > > really likes, > > > > has refused to take her back. They said she is too high risk. Who > do > > > therapists > > > > help?...people who bite their nails? She needs help and they are > > > denying > > > > her to return. So she is coming out of the hospital on meds and I > > > have to start all over > > > > again looking for help. They are the ones that started her on > > > medicine!! She > > > > is that percent of people who get suicidal thoughts when on > > > antidepressants. > > > > I am so sad for her, She has seen soooooo many doctors and has > been > > > laughed at > > > > by so many and has been asked never to return by 3. You would not > > > believe what they have said to her this time too. Two > > > > doctors at the hospital asked if she was doing this for attention. > > > When I told the doctor at the hospital she called > > > > me to come home from work because she said the medicine was giving > her > > > the > > > > courage to kill herself..... the doctor said that it sounded too > > > textbook and that > > > > there was no way she said that herself. I told him, why would she > lie > > > about how > > > > she feels?? On the plus side the medicine gave her the courage to > eat > > > with me > > > > for the first time in about 4 or 5 years. Anyway my daughter is so > > > strong and I > > > > am so proud of her. Here is my question for all of you. This was > her > > > pattern > > > > even not on meds....My daughter stresses out so much about events > she > > > has to attend (if > > > > she has the courage to leave the house and go) but it takes sooo > much > > > courage that she crashes the > > > > very next day for days or weeks. Does this happen to anyone > > > else?...where you > > > > hold it together so well that you crash immediately after?? (I > wrote > > > up to this part the other day) Well they released her out of the > > > hospital yesterday. My husband and I went to meet with another > Doctor > > > who specializes in DBT last night. Anyway it was horrific!!!!!! She > > > did not believe any word we said, she couldn't believe my daughter > > > doesn't eat with me. She also said that the people who appeared on > the > > > today show might have had other motives like money. I was like, > > > WHAT????? She also said to me, " boy you irritate alot of people in > your > > > family. " I said I would never give up on my daughter but OMG all the > > > professionals I have met frustrate me so much. I feel so sorry for > my > > > daughter and all of you who suffer with this. I can't find any help > out > > > there. They sent her home on meds but now I can't find a doctor who > > > wants to see her because they said she is high risk and they don't > know > > > how to help her. She only has 30 days of > > > > medicine then what? I have to wean her off myself without help > > > because no one wants to see her. I am so sad. I don't even know if > > > this makes any sense but I had to vent...because no one else will > > > believe us or help us. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 My family also thought my son was trying to control me, and most of the professionals also, however over time I bombarded everyone with written materials and excerpts from books and also articles until they were convinced that I was not enabling my son and that all of the “typical” parenting just doesn’t work and that a completely different approach, one of understanding and support, is needed. I really had to stand my ground and do a lot of educating. My family is on board now, so that really helps. I see a psychiatrist myself for mild depression and I’ve been educating him about misophonia just to keep spreading the word. He said he does actually have a couple of patients who talked about extreme reactions to certain sounds, and gum chewing in particular, so I gave him resource info on misophonia and he even wrote it down so he would have it next time he saw the patients he was referring to. So, even though he was not familiar with it, he was completely open to learning and using that to help other patients. So – there are some good and kind professionals out there, it just takes a lot of trial and error to find the good ones.Also, my son switched to having a tutor at home, too – around the 7th grade, and eventually went to a special, small school. He transitioned back to high school in the middle of his junior year and I was able to get an IEP (individual educational plan) for him, which helped him cope, but on his 18th birthday, in the middle of his senior year, he refused to go back and never did get his high school diploma. It’s such a shame because he’s really smart (taught himself physics out of our home encyclopedias, refused to do any homework, and then got 100% on his tests – never even erased or changed any answers, just got everything perfect on the first pass), but said it was a waste of time and they weren’t teaching him anything, and it wasn’t worth all that he had to deal with to stay there. It was hard to get him to change course and continue his “formal” education at that point, but for your daughter, just keep fighting to get whatever is needed so that she can keep going with her education (college or a trade) because it’s such an important part of eventually becoming independent. Hang in there – you have a lot of support from everyone here in this forum! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of wouldlovetofindacurefor4sSent: Tuesday, December 13, 2011 5:22 PMTo: Soundsensitivity Subject: Re: I am so sad!! Thank you all for your hugs and support. your story is identicalto mine. My daughter did try to overdose 2 years ago exactly 3 weeksafter starting lexapro. It's been 2 years that I refused meds for her. So again after 3 weeks on prozac the thoughts came back. I too, feel Ihelp her more than any professional. I have been fighting for hersince the 3rd/4th grade. I was the only one who believed there was areason for her behavior while EVERYONE told me she was just trying tocontrol me and my family. I have explained to hundreds that somethingelse was going on. I knew in my heart it was something else. I saw itin her face and body, the fear, panic and rage. She always said, itfelt like something or someone else was taking over her body and she hadno control over it. After the rage came the depression and guilt for Iam her biggest trigger. We also can see right through the doctor'sgames and can tell right away they are not going to help. In the veryearly stages of this, they made my husband and I go to therapy basicallyto learn how to parent and punish her. I would go back each week angrymyself saying this isn't the problem, it's not our parenting. Whateverwe did as parents would not change the fact that when I coughed shewould go into a rage. We discontinued that therapist. She had no clueand I would bring in articles and they never took me serious ever. Wehave come a long way since those days and for that I am so grateful. Ihave learn how to fight and have been fighting but today I feel like Iam losing the battle. The therapist did call back today and told me mydaughter's case was officially closed as of last Friday. I am stillcompletely in shock and baffled. I feel rejected myself. They did saythey would call places for me too. I have told all involved howcompletely shocked and disappointed I am. I am not holding back any ofmy thoughts. I am giving everyone a piece of my mind. The one thingthis condition has done is make me and my daughter stronger. I feellike I can conquer the world on most days. I was on Facebook the otherday and I wanted to scream when I read someone's status that read " Justreturned home from dress shopping with my 13 year old daughter....boy doI need a drink. " I thought, lady come to my house for a day. Thankyou all for giving me my strength back and courage to keep fighting. You all have made my day so much easier and I am forever grateful forthat. you are absolutely right, I have to put more in writing, Ihaven't been as great with that. I do have most though and you can besure I am writing a letter about this. Yes you are right her medicaldoctor has been very understanding and so has her school. I got themost support from the school. Last year they were amazing and wentover and above trying to help my daughter. They bent over backwardsfor her because they knew her and wanted to help her in anyway theycould. They knew how great she is and couldn't believe how she wassucceeding in school while going through all this. But like I said,she no longer goes and is in a tutoring program only 2 hours a day.> > > >> > > > Hi Bernadette,> > > > It sounds to me like you are getting some very bad professional> help.> > > I am shocked! that doctors are turning her away because she is too> " high> > > risk " ? Is that legal?> > > >> > > >> > > > I am one in the minority who can get suicidal thoughts while> > > transitioning onto some medications. It has to do with theserotonin> as> > > I understand it, I am very sensitive to serotonin. (this is a real> > > oversimplication of the chemical problem I am sure). People whoare> > > sensitive to serotonin can also experience an increase anxiety> instead> > > of a decrease with the medication. After a bad episode with thedrug> > > effexor, my Doctor put me on an older medication, a tricyclic> > > anti-depressant, which were the type of antidepressants usedbefore> the> > > SSRIs came out. It has less of an effect on serotonin which is whyI> > > could tolerate it better. If you wean her off the meds she is on> now, I> > > would suggest going very very slowly down on the dosages, I usedto> even> > > split pills into little fragments. My doctor said I have a very> reactive> > > system, the doctor before him did not believe this was> > > possible(obviously it was and is) I am now on a SSRI calledCelexa,> > > which has a much> > > > more selective action on the serotonin probably why I don't have> the> > > side effects of suicidal thoughts or anxiety. Of course everyone> reacts> > > to the drugs differently> > > >> > > >> > > > If your daughter does go back onto a new med, I would suggest> doing it> > > very very slowly, now that I understand how sensitive I am to> serotonin,> > > I understand why I sometimes initially feel worse transitioningonto> a> > > med, and tell myself it will eventually go away once I adjust,which> it> > > usually does. If it doesn't go away or it is way to strong of a> > > reaction, then it is not the drug for me and I have to tell the> doctor> > > right away.> > > >> > > > You are such a great mother for listening and believing your> daughter> > > when the doctors are telling you otherwise. I hope you can find a> > > doctor who is a better fit or a therapist who is willing to work> with> > > your daughter without her being medicated, if medication is only> making> > > her worse. Maybe insisting that the current or nextdoctor/therapist> > > speak to Dr. , will help plead your case.> > > >> > > > I am only sharing my own experience as a patient here, so please> do> > > not take anything i say as medical advice for your daughter. Iknow> how> > > frustating it is trying to find treatment for this what can be a> very> > > incapacitating sound sensitivity.> > > >> > > > I do have the problem with crashing after stressful times.though> > > since my moods have been stablizied on medication, it is less of a> > > problem for me, this probably has more to do with an underlyingmood> > > disorder in my case. I do permit myself to have time to decompress> in> > > solitude rather than trying to force myself to go until I crash.For> > > example I can't go from family/friends holiday event to event to> event.> > > I just have to insist on staying at home alone with a good book> > > sometimes, even if people give me flack for it.> > > >> > > > I pray you find some relief for your daughter soon.> > > >> > > >> > > >> > > > ________________________________> > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@> > > > To: Soundsensitivity > <mailto:Soundsensitivity%40yahoogroups.com>> > > > Sent: Tuesday, December 13, 2011 7:42 AM> > > > Subject: I am so sad!!> > > >> > > >> > > >> > > > My name is Bernadette. I have been a member now for over a year.I> > > have written my story about my> > > > daughter who is now 14 before on this site. Wow things keep> changing> > > so rapidly. As of last November 2010 she no longer goes to school.> > > While talking to my daughter with the tv on, the Today Show story> came> > > on and we couldn't believe it. We both watched in tears. Sincethen> > > she has really> > > > tried to stop isolating herself which she was doing daily. Shewas> > > just living> > > > in her bed and wouldn't come out. After the Today show, she got> the> > > courage to> > > > start to go out a little more with some friends. She started> tutering> > > and her quality of life> > > > started to improve. Anyway she also agreed to go back to> counseling.> > > She finally found a therapist she really liked. They also made her> see> > > a psychiatrist in the> > > > same practice. The doctor wanted to start my daughter back onmeds> > > for her anxiety. Well> > > > my daughter agreed and after 3 weeks on the medicine she feltlike> she> > > wanted to> > > > kill herself. We put her in the hospital to wean her off but to> keep> > > her there> > > > they said she had to be put back on medicine otherwise insurance> > > wouldn't cover> > > > it. (which we finally got because she was always deniedinsurance)> > > Anyway she> > > > started a new med and now the place where she goes to therapyand> > > really likes,> > > > has refused to take her back. They said she is too high risk.Who> do> > > therapists> > > > help?...people who bite their nails? She needs help and they are> > > denying> > > > her to return. So she is coming out of the hospital on meds andI> > > have to start all over> > > > again looking for help. They are the ones that started her on> > > medicine!! She> > > > is that percent of people who get suicidal thoughts when on> > > antidepressants.> > > > I am so sad for her, She has seen soooooo many doctors and has> been> > > laughed at> > > > by so many and has been asked never to return by 3. You wouldnot> > > believe what they have said to her this time too. Two> > > > doctors at the hospital asked if she was doing this forattention.> > > When I told the doctor at the hospital she called> > > > me to come home from work because she said the medicine wasgiving> her> > > the> > > > courage to kill herself..... the doctor said that it sounded too> > > textbook and that> > > > there was no way she said that herself. I told him, why wouldshe> lie> > > about how> > > > she feels?? On the plus side the medicine gave her the courageto> eat> > > with me> > > > for the first time in about 4 or 5 years. Anyway my daughter isso> > > strong and I> > > > am so proud of her. Here is my question for all of you. This was> her> > > pattern> > > > even not on meds....My daughter stresses out so much aboutevents> she> > > has to attend (if> > > > she has the courage to leave the house and go) but it takes sooo> much> > > courage that she crashes the> > > > very next day for days or weeks. Does this happen to anyone> > > else?...where you> > > > hold it together so well that you crash immediately after?? (I> wrote> > > up to this part the other day) Well they released her out of the> > > hospital yesterday. My husband and I went to meet with another> Doctor> > > who specializes in DBT last night. Anyway it was horrific!!!!!!She> > > did not believe any word we said, she couldn't believe my daughter> > > doesn't eat with me. She also said that the people who appeared on> the> > > today show might have had other motives like money. I was like,> > > WHAT????? She also said to me, " boy you irritate alot of people in> your> > > family. " I said I would never give up on my daughter but OMG allthe> > > professionals I have met frustrate me so much. I feel so sorry for> my> > > daughter and all of you who suffer with this. I can't find anyhelp> out> > > there. They sent her home on meds but now I can't find a doctorwho> > > wants to see her because they said she is high risk and they don't> know> > > how to help her. She only has 30 days of> > > > medicine then what? I have to wean her off myself without help> > > because no one wants to see her. I am so sad. I don't even know if> > > this makes any sense but I had to vent...because no one else will> > > believe us or help us.> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Oh my gosh, that sounds terrible....unbelievable how the people supposed to be SAVIORS are tosssing her out into the street at the time she needs them most!!! Keep talking to her, loving her, and maybe get her some good spiritual books, websites, get her music that she loves, hobby supplies, does she like to create in any way? Maybe the lesson is to try to find ways to heal her from within on some level and realize that doctors do not have all the answers...I realize this is easier said than done with the medications involved interfering with her emotions and capabilities to cope, etc, but don't ever underestimate the power of the human spirit. If you would like to give her my email kaciv@..., I would be glad to talk to her anytime, if she just wants to vent to someone with Misophonia, or have some positive thoughts and love sent in her direction, advise, etc. Sometimes just letting it all out to a stranger can be very therapeutic and can help sort stuff out. Is there a suicide hotline in your area or something maybe they know of some resources to get her the immediate help to get to the next point of moving forward. Please hang in there, and tell her that things will get better, she can come through this test and learn from it all, life is beautiful and worth fighting fore. Sending much LOVE and strength to you both <3 Kaci Anne McCall Professional FACE PAINTING, personalized crafts, and more! Please visit:http://www.MysticalRainbowCreations.com "What a privilege to be here on the planet to contribute your unique donation to humankind. Each face in the rainbow of colors that populate our world is precious and special." ~ Dees To: Soundsensitivity Sent: Tuesday, December 13, 2011 12:17 PM Subject: Re: I am so sad!! Thank you so much for your reply and for your prayers. We definitely need them. That was my first question too. Isn't it illegal to deny her help. I am overwhelmed and exhausted. They thought she would do better in an outpatient place everyday while adjusting to the meds. I called this place and they have a waiting list. So now she is without any care and they still won't take her back. It has been 2 years since we tried meds because she never responds well (even to over the counter meds). Honestly she does better off but her anxiety level was increasing. So we thought now that she is older maybe she would respond better. It worked on the level that it gave her the courage to eat with me for the first time in years but didn't work because it also gave her the courage to want to kill herself. The doctors at the hospital felt we should try one more time. I told them NO for the first few days then they convinced me to try again. They said, she still has to get past that 3 week or longer mark and then it would work. What if she doesn't was my concern. Anyway she was on prozac and now they switched her to zoloft because if she does have to come off it, it leaves the body much quicker than prozac. I have been on the phones for days looking for help and a new doctor. I just don't understand why doctor's don't listen or believe their patients. Thanks so much for listening, your response really helped me. > > Hi Bernadette, > It sounds to me like you are getting some very bad professional help. I am shocked! that doctors are turning her away because she is too "high risk" ? Is that legal? > > > I am one in the minority who can get suicidal thoughts while transitioning onto some medications. It has to do with the serotonin as I understand it, I am very sensitive to serotonin. (this is a real oversimplication of the chemical problem I am sure). People who are sensitive to serotonin can also experience an increase anxiety instead of a decrease with the medication. After a bad episode with the drug effexor, my Doctor put me on an older medication, a tricyclic anti-depressant, which were the type of antidepressants used before the SSRIs came out. It has less of an effect on serotonin which is why I could tolerate it better. If you wean her off the meds she is on now, I would suggest going very very slowly down on the dosages, I used to even split pills into little fragments. My doctor said I have a very reactive system, the doctor before him did not believe this was possible(obviously it was and is) I am now on a SSRI called Celexa, which has a much > more selective action on the serotonin probably why I don't have the side effects of suicidal thoughts or anxiety. Of course everyone reacts to the drugs differently > > > If your daughter does go back onto a new med, I would suggest doing it very very slowly, now that I understand how sensitive I am to serotonin, I understand why I sometimes initially feel worse transitioning onto a med, and tell myself it will eventually go away once I adjust, which it usually does. If it doesn't go away or it is way to strong of a reaction, then it is not the drug for me and I have to tell the doctor right away. > > You are such a great mother for listening and believing your daughter when the doctors are telling you otherwise. I hope you can find a doctor who is a better fit or a therapist who is willing to work with your daughter without her being medicated, if medication is only making her worse. Maybe insisting that the current or next doctor/therapist speak to Dr. , will help plead your case. > > I am only sharing my own experience as a patient here, so please do not take anything i say as medical advice for your daughter. I know how frustating it is trying to find treatment for this what can be a very incapacitating sound sensitivity. > > I do have the problem with crashing after stressful times. though since my moods have been stablizied on medication, it is less of a problem for me, this probably has more to do with an underlying mood disorder in my case. I do permit myself to have time to decompress in solitude rather than trying to force myself to go until I crash. For example I can't go from family/friends holiday event to event to event. I just have to insist on staying at home alone with a good book sometimes, even if people give me flack for it. > > I pray you find some relief for your daughter soon. > > > > ________________________________ > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@... > To: Soundsensitivity > Sent: Tuesday, December 13, 2011 7:42 AM > Subject: I am so sad!! > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my > daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really > tried to stop isolating herself which she was doing daily. She was just living > in her bed and wouldn't come out. After the Today show, she got the courage to > start to go out a little more with some friends. She started tutering and her quality of life > started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the > same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well > my daughter agreed and after 3 weeks on the medicine she felt like she wanted to > kill herself. We put her in the hospital to wean her off but to keep her there > they said she had to be put back on medicine otherwise insurance wouldn't cover > it. (which we finally got because she was always denied insurance) Anyway she > started a new med and now the place where she goes to therapy and really likes, > has refused to take her back. They said she is too high risk. Who do therapists > help?...people who bite their nails? She needs help and they are denying > her to return. So she is coming out of the hospital on meds and I have to start all over > again looking for help. They are the ones that started her on medicine!! She > is that percent of people who get suicidal thoughts when on antidepressants. > I am so sad for her, She has seen soooooo many doctors and has been laughed at > by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two > doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called > me to come home from work because she said the medicine was giving her the > courage to kill herself..... the doctor said that it sounded too textbook and that > there was no way she said that herself. I told him, why would she lie about how > she feels?? On the plus side the medicine gave her the courage to eat with me > for the first time in about 4 or 5 years. Anyway my daughter is so strong and I > am so proud of her. Here is my question for all of you. This was her pattern > even not on meds....My daughter stresses out so much about events she has to attend (if > she has the courage to leave the house and go) but it takes sooo much courage that she crashes the > very next day for days or weeks. Does this happen to anyone else?...where you > hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me," boy you irritate alot of people in your family." I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of > medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Bernadette, I was shocked and sad to read about what you and your daughter are having to go through, but it's awe-inspiring to see you fighting for your daughter like a superhero. Please don't give up your search for a compassionate, intelligent professional who can give your daughter what she needs; if I manage to find one myself, I promise I'll pass the name along. They've GOT to exist! As for your question about being strong and then crashing, yes, I have this happen to me frequently. I think it's actually a documented phenomenon: if you " behave " really well for a long time, eventually a meltdown will follow. After doing something that requires a lot of self-control, I usually go to my couch for cookies and Lloyd Webber musicals (nobody laugh at me for liking them so much!), because whatever reserve I was just drawing from needs to be replenished. If your daughter has something relaxing that she loves to do, " rewarding " herself with it after a hard time might help soften her crash. (Plus, she def deserves it!) Hang in there and keep us posted on how the two of you are doing. Remember: you're never alone, even if every doctor you visit seems to have a terminal case of Stupidus Insensitivus Maximus. -Kate K. > > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me, " boy you irritate alot of people in your family. " I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Bernadette, I was shocked and sad to read about what you and your daughter are having to go through, but it's awe-inspiring to see you fighting for your daughter like a superhero. Please don't give up your search for a compassionate, intelligent professional who can give your daughter what she needs; if I manage to find one myself, I promise I'll pass the name along. They've GOT to exist! As for your question about being strong and then crashing, yes, I have this happen to me frequently. I think it's actually a documented phenomenon: if you " behave " really well for a long time, eventually a meltdown will follow. After doing something that requires a lot of self-control, I usually go to my couch for cookies and Lloyd Webber musicals (nobody laugh at me for liking them so much!), because whatever reserve I was just drawing from needs to be replenished. If your daughter has something relaxing that she loves to do, " rewarding " herself with it after a hard time might help soften her crash. (Plus, she def deserves it!) Hang in there and keep us posted on how the two of you are doing. Remember: you're never alone, even if every doctor you visit seems to have a terminal case of Stupidus Insensitivus Maximus. -Kate K. > > > > > My name is Bernadette. I have been a member now for over a year. I have written my story about my daughter who is now 14 before on this site. Wow things keep changing so rapidly. As of last November 2010 she no longer goes to school. While talking to my daughter with the tv on, the Today Show story came on and we couldn't believe it. We both watched in tears. Since then she has really tried to stop isolating herself which she was doing daily. She was just living in her bed and wouldn't come out. After the Today show, she got the courage to start to go out a little more with some friends. She started tutering and her quality of life started to improve. Anyway she also agreed to go back to counseling. She finally found a therapist she really liked. They also made her see a psychiatrist in the same practice. The doctor wanted to start my daughter back on meds for her anxiety. Well my daughter agreed and after 3 weeks on the medicine she felt like she wanted to kill herself. We put her in the hospital to wean her off but to keep her there they said she had to be put back on medicine otherwise insurance wouldn't cover it. (which we finally got because she was always denied insurance) Anyway she started a new med and now the place where she goes to therapy and really likes, has refused to take her back. They said she is too high risk. Who do therapists help?...people who bite their nails? She needs help and they are denying her to return. So she is coming out of the hospital on meds and I have to start all over again looking for help. They are the ones that started her on medicine!! She is that percent of people who get suicidal thoughts when on antidepressants. I am so sad for her, She has seen soooooo many doctors and has been laughed at by so many and has been asked never to return by 3. You would not believe what they have said to her this time too. Two doctors at the hospital asked if she was doing this for attention. When I told the doctor at the hospital she called me to come home from work because she said the medicine was giving her the courage to kill herself..... the doctor said that it sounded too textbook and that there was no way she said that herself. I told him, why would she lie about how she feels?? On the plus side the medicine gave her the courage to eat with me for the first time in about 4 or 5 years. Anyway my daughter is so strong and I am so proud of her. Here is my question for all of you. This was her pattern even not on meds....My daughter stresses out so much about events she has to attend (if she has the courage to leave the house and go) but it takes sooo much courage that she crashes the very next day for days or weeks. Does this happen to anyone else?...where you hold it together so well that you crash immediately after?? (I wrote up to this part the other day) Well they released her out of the hospital yesterday. My husband and I went to meet with another Doctor who specializes in DBT last night. Anyway it was horrific!!!!!! She did not believe any word we said, she couldn't believe my daughter doesn't eat with me. She also said that the people who appeared on the today show might have had other motives like money. I was like, WHAT????? She also said to me, " boy you irritate alot of people in your family. " I said I would never give up on my daughter but OMG all the professionals I have met frustrate me so much. I feel so sorry for my daughter and all of you who suffer with this. I can't find any help out there. They sent her home on meds but now I can't find a doctor who wants to see her because they said she is high risk and they don't know how to help her. She only has 30 days of medicine then what? I have to wean her off myself without help because no one wants to see her. I am so sad. I don't even know if this makes any sense but I had to vent...because no one else will believe us or help us. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 To Kaci and Kate K. Kaci, the event she crashed after was on Dec. 3rd. right after she made her confirmation...You are so right, the one place she was able to attend was her weekly religion class for it made her feel better. We pray A LOT! I feel that is the only thing that is helping us, lots of prayers and I definitely feel God is giving us the strength. That's why I feel we have come so far is with our love and spirit. I remind her everyday that we have a lot of adventures to take and see; and how life has so much to offer. I also remind her to wait out the bad feelings because good ones will follow. One of her worse days I turned into one of her best just recently. She posted a picture of her and I, saying, " any bad day can be turned into a good day especially with help from my mom. " That meant the world to me especially since I am her biggest trigger. It is so hard that I am the one that makes her feel so terrible but also the only one who can help ride her storm. It's such a strange life we are living but we are doing it with so much love even in the darkest moments. She listens to music all the time and that helps too. We have even tried meditation classes but that wasn't as successful. My parents send her prayer cards and notes all the time. Actually 2 weeks ago I was sick and home in bed, I have always hidden all the medicine in the house. Anyway while sick I had many bottles out right next to me since I was right near it. (Yes dumb but there was a reason) I had like 6 prescription bottles out. She was having bad thoughts and came into my room and said that's it, I am taking your pills. She grabbed a bottle and lots of water came flying out all over her and me. It was holy water my mother gave her a year ago. Yes my mom put it in a pill bottle, she didn't have anything else at the time. First of all, there wasn't much water left,(so we didn't know how we both got so wet) second of all, the bottle was never by my bed, third of all...out of all the bottles she grabbed that is the one she chose. We both sat there in disbelief. Out of all the bottles, that is the one she chose. We both agreed, God was sending her a sign. She has faith now, she is not as religious as my parents but we both agree that God is helping. She is actually asking my husband to pray with her as well. She has been trying to work on her self but just not getting there fast enough. She used to be this overly confident kid who would get up in front of anyone or hundreds depending on the event showing off her gymnastic skills or dance moves. She even took a break dancing class and was the only girl in it. (talk about confidence) She has been in lots of events and was so active in so much, dance, gymnastics, piano, soccer, cheerleading, girl scouts...you name it she used to wins awards all the time. Now she lost all of her confidence, she feels fat, ugly and not good enough anymore. She is going through all the regular teenage stuff along with her condition. I keep telling her we are going to write a book and when she talked about these suicidal thoughts. I told her that would not be a good ending to her story. I will give her your email address, thank you. She does talk with Heidi also. She needs to be heard and understood. Thank you so much. KATE K. You made me belly laugh so hard that I couldnt' stop. Boy I haven't laughed that hard all week. I Love the name you gave the doctor's condition. Omg I loved it! Thank you so much for all your support, it feels good to be understood. Hugs right back to everyone on this board. > > > > Hi Bernadette, > > It sounds to me like you are getting some very bad professional help. > I am shocked! that doctors are turning her away because she is too " high > risk " ? Is that legal? > > > > > > I am one in the minority who can get suicidal thoughts while > transitioning onto some medications. It has to do with the serotonin as > I understand it, I am very sensitive to serotonin. (this is a real > oversimplication of the chemical problem I am sure). People who are > sensitive to serotonin can also experience an increase anxiety instead > of a decrease with the medication. After a bad episode with the drug > effexor, my Doctor put me on an older medication, a tricyclic > anti-depressant, which were the type of antidepressants used before the > SSRIs came out. It has less of an effect on serotonin which is why I > could tolerate it better. If you wean her off the meds she is on now, I > would suggest going very very slowly down on the dosages, I used to even > split pills into little fragments. My doctor said I have a very reactive > system, the doctor before him did not believe this was > possible(obviously it was and is) I am now on a SSRI called Celexa, > which has a much > > more selective action on the serotonin probably why I don't have the > side effects of suicidal thoughts or anxiety. Of course everyone reacts > to the drugs differently > > > > > > If your daughter does go back onto a new med, I would suggest doing it > very very slowly, now that I understand how sensitive I am to serotonin, > I understand why I sometimes initially feel worse transitioning onto a > med, and tell myself it will eventually go away once I adjust, which it > usually does. If it doesn't go away or it is way to strong of a > reaction, then it is not the drug for me and I have to tell the doctor > right away. > > > > You are such a great mother for listening and believing your daughter > when the doctors are telling you otherwise. I hope you can find a > doctor who is a better fit or a therapist who is willing to work with > your daughter without her being medicated, if medication is only making > her worse. Maybe insisting that the current or next doctor/therapist > speak to Dr. , will help plead your case. > > > > I am only sharing my own experience as a patient here, so please do > not take anything i say as medical advice for your daughter. I know how > frustating it is trying to find treatment for this what can be a very > incapacitating sound sensitivity. > > > > I do have the problem with crashing after stressful times. though > since my moods have been stablizied on medication, it is less of a > problem for me, this probably has more to do with an underlying mood > disorder in my case. I do permit myself to have time to decompress in > solitude rather than trying to force myself to go until I crash. For > example I can't go from family/friends holiday event to event to event. > I just have to insist on staying at home alone with a good book > sometimes, even if people give me flack for it. > > > > I pray you find some relief for your daughter soon. > > > > > > > > ________________________________ > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > To: Soundsensitivity > > Sent: Tuesday, December 13, 2011 7:42 AM > > Subject: I am so sad!! > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > have written my story about my > > daughter who is now 14 before on this site. Wow things keep changing > so rapidly. As of last November 2010 she no longer goes to school. > While talking to my daughter with the tv on, the Today Show story came > on and we couldn't believe it. We both watched in tears. Since then > she has really > > tried to stop isolating herself which she was doing daily. She was > just living > > in her bed and wouldn't come out. After the Today show, she got the > courage to > > start to go out a little more with some friends. She started tutering > and her quality of life > > started to improve. Anyway she also agreed to go back to counseling. > She finally found a therapist she really liked. They also made her see > a psychiatrist in the > > same practice. The doctor wanted to start my daughter back on meds > for her anxiety. Well > > my daughter agreed and after 3 weeks on the medicine she felt like she > wanted to > > kill herself. We put her in the hospital to wean her off but to keep > her there > > they said she had to be put back on medicine otherwise insurance > wouldn't cover > > it. (which we finally got because she was always denied insurance) > Anyway she > > started a new med and now the place where she goes to therapy and > really likes, > > has refused to take her back. They said she is too high risk. Who do > therapists > > help?...people who bite their nails? She needs help and they are > denying > > her to return. So she is coming out of the hospital on meds and I > have to start all over > > again looking for help. They are the ones that started her on > medicine!! She > > is that percent of people who get suicidal thoughts when on > antidepressants. > > I am so sad for her, She has seen soooooo many doctors and has been > laughed at > > by so many and has been asked never to return by 3. You would not > believe what they have said to her this time too. Two > > doctors at the hospital asked if she was doing this for attention. > When I told the doctor at the hospital she called > > me to come home from work because she said the medicine was giving her > the > > courage to kill herself..... the doctor said that it sounded too > textbook and that > > there was no way she said that herself. I told him, why would she lie > about how > > she feels?? On the plus side the medicine gave her the courage to eat > with me > > for the first time in about 4 or 5 years. Anyway my daughter is so > strong and I > > am so proud of her. Here is my question for all of you. This was her > pattern > > even not on meds....My daughter stresses out so much about events she > has to attend (if > > she has the courage to leave the house and go) but it takes sooo much > courage that she crashes the > > very next day for days or weeks. Does this happen to anyone > else?...where you > > hold it together so well that you crash immediately after?? (I wrote > up to this part the other day) Well they released her out of the > hospital yesterday. My husband and I went to meet with another Doctor > who specializes in DBT last night. Anyway it was horrific!!!!!! She > did not believe any word we said, she couldn't believe my daughter > doesn't eat with me. She also said that the people who appeared on the > today show might have had other motives like money. I was like, > WHAT????? She also said to me, " boy you irritate alot of people in your > family. " I said I would never give up on my daughter but OMG all the > professionals I have met frustrate me so much. I feel so sorry for my > daughter and all of you who suffer with this. I can't find any help out > there. They sent her home on meds but now I can't find a doctor who > wants to see her because they said she is high risk and they don't know > how to help her. She only has 30 days of > > medicine then what? I have to wean her off myself without help > because no one wants to see her. I am so sad. I don't even know if > this makes any sense but I had to vent...because no one else will > believe us or help us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 To Kaci and Kate K. Kaci, the event she crashed after was on Dec. 3rd. right after she made her confirmation...You are so right, the one place she was able to attend was her weekly religion class for it made her feel better. We pray A LOT! I feel that is the only thing that is helping us, lots of prayers and I definitely feel God is giving us the strength. That's why I feel we have come so far is with our love and spirit. I remind her everyday that we have a lot of adventures to take and see; and how life has so much to offer. I also remind her to wait out the bad feelings because good ones will follow. One of her worse days I turned into one of her best just recently. She posted a picture of her and I, saying, " any bad day can be turned into a good day especially with help from my mom. " That meant the world to me especially since I am her biggest trigger. It is so hard that I am the one that makes her feel so terrible but also the only one who can help ride her storm. It's such a strange life we are living but we are doing it with so much love even in the darkest moments. She listens to music all the time and that helps too. We have even tried meditation classes but that wasn't as successful. My parents send her prayer cards and notes all the time. Actually 2 weeks ago I was sick and home in bed, I have always hidden all the medicine in the house. Anyway while sick I had many bottles out right next to me since I was right near it. (Yes dumb but there was a reason) I had like 6 prescription bottles out. She was having bad thoughts and came into my room and said that's it, I am taking your pills. She grabbed a bottle and lots of water came flying out all over her and me. It was holy water my mother gave her a year ago. Yes my mom put it in a pill bottle, she didn't have anything else at the time. First of all, there wasn't much water left,(so we didn't know how we both got so wet) second of all, the bottle was never by my bed, third of all...out of all the bottles she grabbed that is the one she chose. We both sat there in disbelief. Out of all the bottles, that is the one she chose. We both agreed, God was sending her a sign. She has faith now, she is not as religious as my parents but we both agree that God is helping. She is actually asking my husband to pray with her as well. She has been trying to work on her self but just not getting there fast enough. She used to be this overly confident kid who would get up in front of anyone or hundreds depending on the event showing off her gymnastic skills or dance moves. She even took a break dancing class and was the only girl in it. (talk about confidence) She has been in lots of events and was so active in so much, dance, gymnastics, piano, soccer, cheerleading, girl scouts...you name it she used to wins awards all the time. Now she lost all of her confidence, she feels fat, ugly and not good enough anymore. She is going through all the regular teenage stuff along with her condition. I keep telling her we are going to write a book and when she talked about these suicidal thoughts. I told her that would not be a good ending to her story. I will give her your email address, thank you. She does talk with Heidi also. She needs to be heard and understood. Thank you so much. KATE K. You made me belly laugh so hard that I couldnt' stop. Boy I haven't laughed that hard all week. I Love the name you gave the doctor's condition. Omg I loved it! Thank you so much for all your support, it feels good to be understood. Hugs right back to everyone on this board. > > > > Hi Bernadette, > > It sounds to me like you are getting some very bad professional help. > I am shocked! that doctors are turning her away because she is too " high > risk " ? Is that legal? > > > > > > I am one in the minority who can get suicidal thoughts while > transitioning onto some medications. It has to do with the serotonin as > I understand it, I am very sensitive to serotonin. (this is a real > oversimplication of the chemical problem I am sure). People who are > sensitive to serotonin can also experience an increase anxiety instead > of a decrease with the medication. After a bad episode with the drug > effexor, my Doctor put me on an older medication, a tricyclic > anti-depressant, which were the type of antidepressants used before the > SSRIs came out. It has less of an effect on serotonin which is why I > could tolerate it better. If you wean her off the meds she is on now, I > would suggest going very very slowly down on the dosages, I used to even > split pills into little fragments. My doctor said I have a very reactive > system, the doctor before him did not believe this was > possible(obviously it was and is) I am now on a SSRI called Celexa, > which has a much > > more selective action on the serotonin probably why I don't have the > side effects of suicidal thoughts or anxiety. Of course everyone reacts > to the drugs differently > > > > > > If your daughter does go back onto a new med, I would suggest doing it > very very slowly, now that I understand how sensitive I am to serotonin, > I understand why I sometimes initially feel worse transitioning onto a > med, and tell myself it will eventually go away once I adjust, which it > usually does. If it doesn't go away or it is way to strong of a > reaction, then it is not the drug for me and I have to tell the doctor > right away. > > > > You are such a great mother for listening and believing your daughter > when the doctors are telling you otherwise. I hope you can find a > doctor who is a better fit or a therapist who is willing to work with > your daughter without her being medicated, if medication is only making > her worse. Maybe insisting that the current or next doctor/therapist > speak to Dr. , will help plead your case. > > > > I am only sharing my own experience as a patient here, so please do > not take anything i say as medical advice for your daughter. I know how > frustating it is trying to find treatment for this what can be a very > incapacitating sound sensitivity. > > > > I do have the problem with crashing after stressful times. though > since my moods have been stablizied on medication, it is less of a > problem for me, this probably has more to do with an underlying mood > disorder in my case. I do permit myself to have time to decompress in > solitude rather than trying to force myself to go until I crash. For > example I can't go from family/friends holiday event to event to event. > I just have to insist on staying at home alone with a good book > sometimes, even if people give me flack for it. > > > > I pray you find some relief for your daughter soon. > > > > > > > > ________________________________ > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > To: Soundsensitivity > > Sent: Tuesday, December 13, 2011 7:42 AM > > Subject: I am so sad!! > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > have written my story about my > > daughter who is now 14 before on this site. Wow things keep changing > so rapidly. As of last November 2010 she no longer goes to school. > While talking to my daughter with the tv on, the Today Show story came > on and we couldn't believe it. We both watched in tears. Since then > she has really > > tried to stop isolating herself which she was doing daily. She was > just living > > in her bed and wouldn't come out. After the Today show, she got the > courage to > > start to go out a little more with some friends. She started tutering > and her quality of life > > started to improve. Anyway she also agreed to go back to counseling. > She finally found a therapist she really liked. They also made her see > a psychiatrist in the > > same practice. The doctor wanted to start my daughter back on meds > for her anxiety. Well > > my daughter agreed and after 3 weeks on the medicine she felt like she > wanted to > > kill herself. We put her in the hospital to wean her off but to keep > her there > > they said she had to be put back on medicine otherwise insurance > wouldn't cover > > it. (which we finally got because she was always denied insurance) > Anyway she > > started a new med and now the place where she goes to therapy and > really likes, > > has refused to take her back. They said she is too high risk. Who do > therapists > > help?...people who bite their nails? She needs help and they are > denying > > her to return. So she is coming out of the hospital on meds and I > have to start all over > > again looking for help. They are the ones that started her on > medicine!! She > > is that percent of people who get suicidal thoughts when on > antidepressants. > > I am so sad for her, She has seen soooooo many doctors and has been > laughed at > > by so many and has been asked never to return by 3. You would not > believe what they have said to her this time too. Two > > doctors at the hospital asked if she was doing this for attention. > When I told the doctor at the hospital she called > > me to come home from work because she said the medicine was giving her > the > > courage to kill herself..... the doctor said that it sounded too > textbook and that > > there was no way she said that herself. I told him, why would she lie > about how > > she feels?? On the plus side the medicine gave her the courage to eat > with me > > for the first time in about 4 or 5 years. Anyway my daughter is so > strong and I > > am so proud of her. Here is my question for all of you. This was her > pattern > > even not on meds....My daughter stresses out so much about events she > has to attend (if > > she has the courage to leave the house and go) but it takes sooo much > courage that she crashes the > > very next day for days or weeks. Does this happen to anyone > else?...where you > > hold it together so well that you crash immediately after?? (I wrote > up to this part the other day) Well they released her out of the > hospital yesterday. My husband and I went to meet with another Doctor > who specializes in DBT last night. Anyway it was horrific!!!!!! She > did not believe any word we said, she couldn't believe my daughter > doesn't eat with me. She also said that the people who appeared on the > today show might have had other motives like money. I was like, > WHAT????? She also said to me, " boy you irritate alot of people in your > family. " I said I would never give up on my daughter but OMG all the > professionals I have met frustrate me so much. I feel so sorry for my > daughter and all of you who suffer with this. I can't find any help out > there. They sent her home on meds but now I can't find a doctor who > wants to see her because they said she is high risk and they don't know > how to help her. She only has 30 days of > > medicine then what? I have to wean her off myself without help > because no one wants to see her. I am so sad. I don't even know if > this makes any sense but I had to vent...because no one else will > believe us or help us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 I have done the same thing, sending old doctors the articles and trying to spread the word as well. I too, see my daughter not finishing school. I will fight for her to finish since she loves to learn but I am also open to the fact that she has to do it when she is ready. They told me she has until she is 21 to get her high school diploma or if she is eager she could even graduate earlier. Her dream is to graduate with her friends. At this rate with her missing so much school,I don't know how it is possible. I think your son will do the same, do it in his own time and when ready. It's never to late to go back. Does he work? Is he able to? > > > > > > > > > > Hi Bernadette, > > > > > It sounds to me like you are getting some very bad professional > > help. > > > > I am shocked! that doctors are turning her away because she is too > > " high > > > > risk " ? Is that legal? > > > > > > > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > > > transitioning onto some medications. It has to do with the > serotonin > > as > > > > I understand it, I am very sensitive to serotonin. (this is a real > > > > oversimplication of the chemical problem I am sure). People who > are > > > > sensitive to serotonin can also experience an increase anxiety > > instead > > > > of a decrease with the medication. After a bad episode with the > drug > > > > effexor, my Doctor put me on an older medication, a tricyclic > > > > anti-depressant, which were the type of antidepressants used > before > > the > > > > SSRIs came out. It has less of an effect on serotonin which is why > I > > > > could tolerate it better. If you wean her off the meds she is on > > now, I > > > > would suggest going very very slowly down on the dosages, I used > to > > even > > > > split pills into little fragments. My doctor said I have a very > > reactive > > > > system, the doctor before him did not believe this was > > > > possible(obviously it was and is) I am now on a SSRI called > Celexa, > > > > which has a much > > > > > more selective action on the serotonin probably why I don't have > > the > > > > side effects of suicidal thoughts or anxiety. Of course everyone > > reacts > > > > to the drugs differently > > > > > > > > > > > > > > > If your daughter does go back onto a new med, I would suggest > > doing it > > > > very very slowly, now that I understand how sensitive I am to > > serotonin, > > > > I understand why I sometimes initially feel worse transitioning > onto > > a > > > > med, and tell myself it will eventually go away once I adjust, > which > > it > > > > usually does. If it doesn't go away or it is way to strong of a > > > > reaction, then it is not the drug for me and I have to tell the > > doctor > > > > right away. > > > > > > > > > > You are such a great mother for listening and believing your > > daughter > > > > when the doctors are telling you otherwise. I hope you can find a > > > > doctor who is a better fit or a therapist who is willing to work > > with > > > > your daughter without her being medicated, if medication is only > > making > > > > her worse. Maybe insisting that the current or next > doctor/therapist > > > > speak to Dr. , will help plead your case. > > > > > > > > > > I am only sharing my own experience as a patient here, so please > > do > > > > not take anything i say as medical advice for your daughter. I > know > > how > > > > frustating it is trying to find treatment for this what can be a > > very > > > > incapacitating sound sensitivity. > > > > > > > > > > I do have the problem with crashing after stressful times. > though > > > > since my moods have been stablizied on medication, it is less of a > > > > problem for me, this probably has more to do with an underlying > mood > > > > disorder in my case. I do permit myself to have time to decompress > > in > > > > solitude rather than trying to force myself to go until I crash. > For > > > > example I can't go from family/friends holiday event to event to > > event. > > > > I just have to insist on staying at home alone with a good book > > > > sometimes, even if people give me flack for it. > > > > > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > > > To: Soundsensitivity > <mailto:Soundsensitivity%40yahoogroups.com> > > <mailto:Soundsensitivity%40yahoogroups.com> > > > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > > > Subject: I am so sad!! > > > > > > > > > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. > I > > > > have written my story about my > > > > > daughter who is now 14 before on this site. Wow things keep > > changing > > > > so rapidly. As of last November 2010 she no longer goes to school. > > > > While talking to my daughter with the tv on, the Today Show story > > came > > > > on and we couldn't believe it. We both watched in tears. Since > then > > > > she has really > > > > > tried to stop isolating herself which she was doing daily. She > was > > > > just living > > > > > in her bed and wouldn't come out. After the Today show, she got > > the > > > > courage to > > > > > start to go out a little more with some friends. She started > > tutering > > > > and her quality of life > > > > > started to improve. Anyway she also agreed to go back to > > counseling. > > > > She finally found a therapist she really liked. They also made her > > see > > > > a psychiatrist in the > > > > > same practice. The doctor wanted to start my daughter back on > meds > > > > for her anxiety. Well > > > > > my daughter agreed and after 3 weeks on the medicine she felt > like > > she > > > > wanted to > > > > > kill herself. We put her in the hospital to wean her off but to > > keep > > > > her there > > > > > they said she had to be put back on medicine otherwise insurance > > > > wouldn't cover > > > > > it. (which we finally got because she was always denied > insurance) > > > > Anyway she > > > > > started a new med and now the place where she goes to therapy > and > > > > really likes, > > > > > has refused to take her back. They said she is too high risk. > Who > > do > > > > therapists > > > > > help?...people who bite their nails? She needs help and they are > > > > denying > > > > > her to return. So she is coming out of the hospital on meds and > I > > > > have to start all over > > > > > again looking for help. They are the ones that started her on > > > > medicine!! She > > > > > is that percent of people who get suicidal thoughts when on > > > > antidepressants. > > > > > I am so sad for her, She has seen soooooo many doctors and has > > been > > > > laughed at > > > > > by so many and has been asked never to return by 3. You would > not > > > > believe what they have said to her this time too. Two > > > > > doctors at the hospital asked if she was doing this for > attention. > > > > When I told the doctor at the hospital she called > > > > > me to come home from work because she said the medicine was > giving > > her > > > > the > > > > > courage to kill herself..... the doctor said that it sounded too > > > > textbook and that > > > > > there was no way she said that herself. I told him, why would > she > > lie > > > > about how > > > > > she feels?? On the plus side the medicine gave her the courage > to > > eat > > > > with me > > > > > for the first time in about 4 or 5 years. Anyway my daughter is > so > > > > strong and I > > > > > am so proud of her. Here is my question for all of you. This was > > her > > > > pattern > > > > > even not on meds....My daughter stresses out so much about > events > > she > > > > has to attend (if > > > > > she has the courage to leave the house and go) but it takes sooo > > much > > > > courage that she crashes the > > > > > very next day for days or weeks. Does this happen to anyone > > > > else?...where you > > > > > hold it together so well that you crash immediately after?? (I > > wrote > > > > up to this part the other day) Well they released her out of the > > > > hospital yesterday. My husband and I went to meet with another > > Doctor > > > > who specializes in DBT last night. Anyway it was horrific!!!!!! > She > > > > did not believe any word we said, she couldn't believe my daughter > > > > doesn't eat with me. She also said that the people who appeared on > > the > > > > today show might have had other motives like money. I was like, > > > > WHAT????? She also said to me, " boy you irritate alot of people in > > your > > > > family. " I said I would never give up on my daughter but OMG all > the > > > > professionals I have met frustrate me so much. I feel so sorry for > > my > > > > daughter and all of you who suffer with this. I can't find any > help > > out > > > > there. They sent her home on meds but now I can't find a doctor > who > > > > wants to see her because they said she is high risk and they don't > > know > > > > how to help her. She only has 30 days of > > > > > medicine then what? I have to wean her off myself without help > > > > because no one wants to see her. I am so sad. I don't even know if > > > > this makes any sense but I had to vent...because no one else will > > > > believe us or help us. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 I have done the same thing, sending old doctors the articles and trying to spread the word as well. I too, see my daughter not finishing school. I will fight for her to finish since she loves to learn but I am also open to the fact that she has to do it when she is ready. They told me she has until she is 21 to get her high school diploma or if she is eager she could even graduate earlier. Her dream is to graduate with her friends. At this rate with her missing so much school,I don't know how it is possible. I think your son will do the same, do it in his own time and when ready. It's never to late to go back. Does he work? Is he able to? > > > > > > > > > > Hi Bernadette, > > > > > It sounds to me like you are getting some very bad professional > > help. > > > > I am shocked! that doctors are turning her away because she is too > > " high > > > > risk " ? Is that legal? > > > > > > > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > > > transitioning onto some medications. It has to do with the > serotonin > > as > > > > I understand it, I am very sensitive to serotonin. (this is a real > > > > oversimplication of the chemical problem I am sure). People who > are > > > > sensitive to serotonin can also experience an increase anxiety > > instead > > > > of a decrease with the medication. After a bad episode with the > drug > > > > effexor, my Doctor put me on an older medication, a tricyclic > > > > anti-depressant, which were the type of antidepressants used > before > > the > > > > SSRIs came out. It has less of an effect on serotonin which is why > I > > > > could tolerate it better. If you wean her off the meds she is on > > now, I > > > > would suggest going very very slowly down on the dosages, I used > to > > even > > > > split pills into little fragments. My doctor said I have a very > > reactive > > > > system, the doctor before him did not believe this was > > > > possible(obviously it was and is) I am now on a SSRI called > Celexa, > > > > which has a much > > > > > more selective action on the serotonin probably why I don't have > > the > > > > side effects of suicidal thoughts or anxiety. Of course everyone > > reacts > > > > to the drugs differently > > > > > > > > > > > > > > > If your daughter does go back onto a new med, I would suggest > > doing it > > > > very very slowly, now that I understand how sensitive I am to > > serotonin, > > > > I understand why I sometimes initially feel worse transitioning > onto > > a > > > > med, and tell myself it will eventually go away once I adjust, > which > > it > > > > usually does. If it doesn't go away or it is way to strong of a > > > > reaction, then it is not the drug for me and I have to tell the > > doctor > > > > right away. > > > > > > > > > > You are such a great mother for listening and believing your > > daughter > > > > when the doctors are telling you otherwise. I hope you can find a > > > > doctor who is a better fit or a therapist who is willing to work > > with > > > > your daughter without her being medicated, if medication is only > > making > > > > her worse. Maybe insisting that the current or next > doctor/therapist > > > > speak to Dr. , will help plead your case. > > > > > > > > > > I am only sharing my own experience as a patient here, so please > > do > > > > not take anything i say as medical advice for your daughter. I > know > > how > > > > frustating it is trying to find treatment for this what can be a > > very > > > > incapacitating sound sensitivity. > > > > > > > > > > I do have the problem with crashing after stressful times. > though > > > > since my moods have been stablizied on medication, it is less of a > > > > problem for me, this probably has more to do with an underlying > mood > > > > disorder in my case. I do permit myself to have time to decompress > > in > > > > solitude rather than trying to force myself to go until I crash. > For > > > > example I can't go from family/friends holiday event to event to > > event. > > > > I just have to insist on staying at home alone with a good book > > > > sometimes, even if people give me flack for it. > > > > > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > > > To: Soundsensitivity > <mailto:Soundsensitivity%40yahoogroups.com> > > <mailto:Soundsensitivity%40yahoogroups.com> > > > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > > > Subject: I am so sad!! > > > > > > > > > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. > I > > > > have written my story about my > > > > > daughter who is now 14 before on this site. Wow things keep > > changing > > > > so rapidly. As of last November 2010 she no longer goes to school. > > > > While talking to my daughter with the tv on, the Today Show story > > came > > > > on and we couldn't believe it. We both watched in tears. Since > then > > > > she has really > > > > > tried to stop isolating herself which she was doing daily. She > was > > > > just living > > > > > in her bed and wouldn't come out. After the Today show, she got > > the > > > > courage to > > > > > start to go out a little more with some friends. She started > > tutering > > > > and her quality of life > > > > > started to improve. Anyway she also agreed to go back to > > counseling. > > > > She finally found a therapist she really liked. They also made her > > see > > > > a psychiatrist in the > > > > > same practice. The doctor wanted to start my daughter back on > meds > > > > for her anxiety. Well > > > > > my daughter agreed and after 3 weeks on the medicine she felt > like > > she > > > > wanted to > > > > > kill herself. We put her in the hospital to wean her off but to > > keep > > > > her there > > > > > they said she had to be put back on medicine otherwise insurance > > > > wouldn't cover > > > > > it. (which we finally got because she was always denied > insurance) > > > > Anyway she > > > > > started a new med and now the place where she goes to therapy > and > > > > really likes, > > > > > has refused to take her back. They said she is too high risk. > Who > > do > > > > therapists > > > > > help?...people who bite their nails? She needs help and they are > > > > denying > > > > > her to return. So she is coming out of the hospital on meds and > I > > > > have to start all over > > > > > again looking for help. They are the ones that started her on > > > > medicine!! She > > > > > is that percent of people who get suicidal thoughts when on > > > > antidepressants. > > > > > I am so sad for her, She has seen soooooo many doctors and has > > been > > > > laughed at > > > > > by so many and has been asked never to return by 3. You would > not > > > > believe what they have said to her this time too. Two > > > > > doctors at the hospital asked if she was doing this for > attention. > > > > When I told the doctor at the hospital she called > > > > > me to come home from work because she said the medicine was > giving > > her > > > > the > > > > > courage to kill herself..... the doctor said that it sounded too > > > > textbook and that > > > > > there was no way she said that herself. I told him, why would > she > > lie > > > > about how > > > > > she feels?? On the plus side the medicine gave her the courage > to > > eat > > > > with me > > > > > for the first time in about 4 or 5 years. Anyway my daughter is > so > > > > strong and I > > > > > am so proud of her. Here is my question for all of you. This was > > her > > > > pattern > > > > > even not on meds....My daughter stresses out so much about > events > > she > > > > has to attend (if > > > > > she has the courage to leave the house and go) but it takes sooo > > much > > > > courage that she crashes the > > > > > very next day for days or weeks. Does this happen to anyone > > > > else?...where you > > > > > hold it together so well that you crash immediately after?? (I > > wrote > > > > up to this part the other day) Well they released her out of the > > > > hospital yesterday. My husband and I went to meet with another > > Doctor > > > > who specializes in DBT last night. Anyway it was horrific!!!!!! > She > > > > did not believe any word we said, she couldn't believe my daughter > > > > doesn't eat with me. She also said that the people who appeared on > > the > > > > today show might have had other motives like money. I was like, > > > > WHAT????? She also said to me, " boy you irritate alot of people in > > your > > > > family. " I said I would never give up on my daughter but OMG all > the > > > > professionals I have met frustrate me so much. I feel so sorry for > > my > > > > daughter and all of you who suffer with this. I can't find any > help > > out > > > > there. They sent her home on meds but now I can't find a doctor > who > > > > wants to see her because they said she is high risk and they don't > > know > > > > how to help her. She only has 30 days of > > > > > medicine then what? I have to wean her off myself without help > > > > because no one wants to see her. I am so sad. I don't even know if > > > > this makes any sense but I had to vent...because no one else will > > > > believe us or help us. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 I loved reading the part about the holy water in the prescription bottle. It was one of those "God winks" God, letting you both know he is there. To: Soundsensitivity Sent: Wed, December 14, 2011 9:24:00 AMSubject: Re: I am so sad!! To Kaci and Kate K.Kaci, the event she crashed after was on Dec. 3rd. right after she madeher confirmation...You are so right, the one place she was able toattend was her weekly religion class for it made her feel better. Wepray A LOT! I feel that is the only thing that is helping us, lots ofprayers and I definitely feel God is giving us the strength. That's whyI feel we have come so far is with our love and spirit. I remind hereveryday that we have a lot of adventures to take and see; and how lifehas so much to offer. I also remind her to wait out the bad feelingsbecause good ones will follow. One of her worse days I turned into oneof her best just recently. She posted a picture of her and I, saying,"any bad day can be turned into a good day especially with help from mymom." That meant the world to me especially since I am her biggesttrigger. It is so hard that I am the one that makes her feel soterrible but also the only one who can help ride her storm. It's such astrange life we are living but we are doing it with so much love even inthe darkest moments. She listens to music all the time and that helpstoo. We have even tried meditation classes but that wasn't assuccessful. My parents send her prayer cards and notes all the time. Actually 2 weeks ago I was sick and home in bed, I have always hiddenall the medicine in the house. Anyway while sick I had many bottles outright next to me since I was right near it. (Yes dumb but there was areason) I had like 6 prescription bottles out. She was having badthoughts and came into my room and said that's it, I am taking yourpills. She grabbed a bottle and lots of water came flying out all overher and me. It was holy water my mother gave her a year ago. Yes mymom put it in a pill bottle, she didn't have anything else at the time. First of all, there wasn't much water left,(so we didn't know how weboth got so wet) second of all, the bottle was never by my bed, thirdof all...out of all the bottles she grabbed that is the one she chose. We both sat there in disbelief. Out of all the bottles, that is theone she chose. We both agreed, God was sending her a sign. She hasfaith now, she is not as religious as my parents but we both agree thatGod is helping. She is actually asking my husband to pray with her aswell. She has been trying to work on her self but just not gettingthere fast enough. She used to be this overly confident kid who wouldget up in front of anyone or hundreds depending on the event showing offher gymnastic skills or dance moves. She even took a break dancing classand was the only girl in it. (talk about confidence) She has been inlots of events and was so active in so much, dance, gymnastics, piano,soccer, cheerleading, girl scouts...you name it she used to wins awardsall the time. Now she lost all of her confidence, she feels fat, uglyand not good enough anymore. She is going through all the regularteenage stuff along with her condition. I keep telling her we aregoing to write a book and when she talked about these suicidal thoughts.I told her that would not be a good ending to her story. I will giveher your email address, thank you. She does talk with Heidi also. Sheneeds to be heard and understood. Thank you so much. KATE K. You made me belly laugh so hard that I couldnt' stop. Boy I haven'tlaughed that hard all week. I Love the name you gave the doctor'scondition. Omg I loved it! Thank you so much for all your support, itfeels good to be understood. Hugs right back to everyone on thisboard.> >> > Hi Bernadette,> > It sounds to me like you are getting some very bad professionalhelp.> I am shocked! that doctors are turning her away because she is too"high> risk" ? Is that legal?> >> >> > I am one in the minority who can get suicidal thoughts while> transitioning onto some medications. It has to do with the serotoninas> I understand it, I am very sensitive to serotonin. (this is a real> oversimplication of the chemical problem I am sure). People who are> sensitive to serotonin can also experience an increase anxiety instead> of a decrease with the medication. After a bad episode with the drug> effexor, my Doctor put me on an older medication, a tricyclic> anti-depressant, which were the type of antidepressants used beforethe> SSRIs came out. It has less of an effect on serotonin which is why I> could tolerate it better. If you wean her off the meds she is on now,I> would suggest going very very slowly down on the dosages, I used toeven> split pills into little fragments. My doctor said I have a veryreactive> system, the doctor before him did not believe this was> possible(obviously it was and is) I am now on a SSRI called Celexa,> which has a much> > more selective action on the serotonin probably why I don't havethe> side effects of suicidal thoughts or anxiety. Of course everyonereacts> to the drugs differently> >> >> > If your daughter does go back onto a new med, I would suggest doingit> very very slowly, now that I understand how sensitive I am toserotonin,> I understand why I sometimes initially feel worse transitioning onto a> med, and tell myself it will eventually go away once I adjust, whichit> usually does. If it doesn't go away or it is way to strong of a> reaction, then it is not the drug for me and I have to tell the doctor> right away.> >> > You are such a great mother for listening and believing yourdaughter> when the doctors are telling you otherwise. I hope you can find a> doctor who is a better fit or a therapist who is willing to work with> your daughter without her being medicated, if medication is onlymaking> her worse. Maybe insisting that the current or next doctor/therapist> speak to Dr. , will help plead your case.> >> > I am only sharing my own experience as a patient here, so please do> not take anything i say as medical advice for your daughter. I knowhow> frustating it is trying to find treatment for this what can be a very> incapacitating sound sensitivity.> >> > I do have the problem with crashing after stressful times. though> since my moods have been stablizied on medication, it is less of a> problem for me, this probably has more to do with an underlying mood> disorder in my case. I do permit myself to have time to decompress in> solitude rather than trying to force myself to go until I crash. For> example I can't go from family/friends holiday event to event toevent.> I just have to insist on staying at home alone with a good book> sometimes, even if people give me flack for it.> >> > I pray you find some relief for your daughter soon.> >> >> >> > ________________________________> > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@> > To: Soundsensitivity > > Sent: Tuesday, December 13, 2011 7:42 AM> > Subject: I am so sad!!> >> >> >> > My name is Bernadette. I have been a member now for over a year. I> have written my story about my> > daughter who is now 14 before on this site. Wow things keepchanging> so rapidly. As of last November 2010 she no longer goes to school.> While talking to my daughter with the tv on, the Today Show story came> on and we couldn't believe it. We both watched in tears. Since then> she has really> > tried to stop isolating herself which she was doing daily. She was> just living> > in her bed and wouldn't come out. After the Today show, she got the> courage to> > start to go out a little more with some friends. She startedtutering> and her quality of life> > started to improve. Anyway she also agreed to go back tocounseling.> She finally found a therapist she really liked. They also made hersee> a psychiatrist in the> > same practice. The doctor wanted to start my daughter back on meds> for her anxiety. Well> > my daughter agreed and after 3 weeks on the medicine she felt likeshe> wanted to> > kill herself. We put her in the hospital to wean her off but tokeep> her there> > they said she had to be put back on medicine otherwise insurance> wouldn't cover> > it. (which we finally got because she was always denied insurance)> Anyway she> > started a new med and now the place where she goes to therapy and> really likes,> > has refused to take her back. They said she is too high risk. Whodo> therapists> > help?...people who bite their nails? She needs help and they are> denying> > her to return. So she is coming out of the hospital on meds and I> have to start all over> > again looking for help. They are the ones that started her on> medicine!! She> > is that percent of people who get suicidal thoughts when on> antidepressants.> > I am so sad for her, She has seen soooooo many doctors and has been> laughed at> > by so many and has been asked never to return by 3. You would not> believe what they have said to her this time too. Two> > doctors at the hospital asked if she was doing this for attention.> When I told the doctor at the hospital she called> > me to come home from work because she said the medicine was givingher> the> > courage to kill herself..... the doctor said that it sounded too> textbook and that> > there was no way she said that herself. I told him, why would shelie> about how> > she feels?? On the plus side the medicine gave her the courage toeat> with me> > for the first time in about 4 or 5 years. Anyway my daughter is so> strong and I> > am so proud of her. Here is my question for all of you. This washer> pattern> > even not on meds....My daughter stresses out so much about eventsshe> has to attend (if> > she has the courage to leave the house and go) but it takes sooomuch> courage that she crashes the> > very next day for days or weeks. Does this happen to anyone> else?...where you> > hold it together so well that you crash immediately after?? (Iwrote> up to this part the other day) Well they released her out of the> hospital yesterday. My husband and I went to meet with another Doctor> who specializes in DBT last night. Anyway it was horrific!!!!!! She> did not believe any word we said, she couldn't believe my daughter> doesn't eat with me. She also said that the people who appeared onthe> today show might have had other motives like money. I was like,> WHAT????? She also said to me," boy you irritate alot of people inyour> family." I said I would never give up on my daughter but OMG all the> professionals I have met frustrate me so much. I feel so sorry for my> daughter and all of you who suffer with this. I can't find any helpout> there. They sent her home on meds but now I can't find a doctor who> wants to see her because they said she is high risk and they don'tknow> how to help her. She only has 30 days of> > medicine then what? I have to wean her off myself without help> because no one wants to see her. I am so sad. I don't even know if> this makes any sense but I had to vent...because no one else will> believe us or help us.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 I loved reading the part about the holy water in the prescription bottle. It was one of those "God winks" God, letting you both know he is there. To: Soundsensitivity Sent: Wed, December 14, 2011 9:24:00 AMSubject: Re: I am so sad!! To Kaci and Kate K.Kaci, the event she crashed after was on Dec. 3rd. right after she madeher confirmation...You are so right, the one place she was able toattend was her weekly religion class for it made her feel better. Wepray A LOT! I feel that is the only thing that is helping us, lots ofprayers and I definitely feel God is giving us the strength. That's whyI feel we have come so far is with our love and spirit. I remind hereveryday that we have a lot of adventures to take and see; and how lifehas so much to offer. I also remind her to wait out the bad feelingsbecause good ones will follow. One of her worse days I turned into oneof her best just recently. She posted a picture of her and I, saying,"any bad day can be turned into a good day especially with help from mymom." That meant the world to me especially since I am her biggesttrigger. It is so hard that I am the one that makes her feel soterrible but also the only one who can help ride her storm. It's such astrange life we are living but we are doing it with so much love even inthe darkest moments. She listens to music all the time and that helpstoo. We have even tried meditation classes but that wasn't assuccessful. My parents send her prayer cards and notes all the time. Actually 2 weeks ago I was sick and home in bed, I have always hiddenall the medicine in the house. Anyway while sick I had many bottles outright next to me since I was right near it. (Yes dumb but there was areason) I had like 6 prescription bottles out. She was having badthoughts and came into my room and said that's it, I am taking yourpills. She grabbed a bottle and lots of water came flying out all overher and me. It was holy water my mother gave her a year ago. Yes mymom put it in a pill bottle, she didn't have anything else at the time. First of all, there wasn't much water left,(so we didn't know how weboth got so wet) second of all, the bottle was never by my bed, thirdof all...out of all the bottles she grabbed that is the one she chose. We both sat there in disbelief. Out of all the bottles, that is theone she chose. We both agreed, God was sending her a sign. She hasfaith now, she is not as religious as my parents but we both agree thatGod is helping. She is actually asking my husband to pray with her aswell. She has been trying to work on her self but just not gettingthere fast enough. She used to be this overly confident kid who wouldget up in front of anyone or hundreds depending on the event showing offher gymnastic skills or dance moves. She even took a break dancing classand was the only girl in it. (talk about confidence) She has been inlots of events and was so active in so much, dance, gymnastics, piano,soccer, cheerleading, girl scouts...you name it she used to wins awardsall the time. Now she lost all of her confidence, she feels fat, uglyand not good enough anymore. She is going through all the regularteenage stuff along with her condition. I keep telling her we aregoing to write a book and when she talked about these suicidal thoughts.I told her that would not be a good ending to her story. I will giveher your email address, thank you. She does talk with Heidi also. Sheneeds to be heard and understood. Thank you so much. KATE K. You made me belly laugh so hard that I couldnt' stop. Boy I haven'tlaughed that hard all week. I Love the name you gave the doctor'scondition. Omg I loved it! Thank you so much for all your support, itfeels good to be understood. Hugs right back to everyone on thisboard.> >> > Hi Bernadette,> > It sounds to me like you are getting some very bad professionalhelp.> I am shocked! that doctors are turning her away because she is too"high> risk" ? Is that legal?> >> >> > I am one in the minority who can get suicidal thoughts while> transitioning onto some medications. It has to do with the serotoninas> I understand it, I am very sensitive to serotonin. (this is a real> oversimplication of the chemical problem I am sure). People who are> sensitive to serotonin can also experience an increase anxiety instead> of a decrease with the medication. After a bad episode with the drug> effexor, my Doctor put me on an older medication, a tricyclic> anti-depressant, which were the type of antidepressants used beforethe> SSRIs came out. It has less of an effect on serotonin which is why I> could tolerate it better. If you wean her off the meds she is on now,I> would suggest going very very slowly down on the dosages, I used toeven> split pills into little fragments. My doctor said I have a veryreactive> system, the doctor before him did not believe this was> possible(obviously it was and is) I am now on a SSRI called Celexa,> which has a much> > more selective action on the serotonin probably why I don't havethe> side effects of suicidal thoughts or anxiety. Of course everyonereacts> to the drugs differently> >> >> > If your daughter does go back onto a new med, I would suggest doingit> very very slowly, now that I understand how sensitive I am toserotonin,> I understand why I sometimes initially feel worse transitioning onto a> med, and tell myself it will eventually go away once I adjust, whichit> usually does. If it doesn't go away or it is way to strong of a> reaction, then it is not the drug for me and I have to tell the doctor> right away.> >> > You are such a great mother for listening and believing yourdaughter> when the doctors are telling you otherwise. I hope you can find a> doctor who is a better fit or a therapist who is willing to work with> your daughter without her being medicated, if medication is onlymaking> her worse. Maybe insisting that the current or next doctor/therapist> speak to Dr. , will help plead your case.> >> > I am only sharing my own experience as a patient here, so please do> not take anything i say as medical advice for your daughter. I knowhow> frustating it is trying to find treatment for this what can be a very> incapacitating sound sensitivity.> >> > I do have the problem with crashing after stressful times. though> since my moods have been stablizied on medication, it is less of a> problem for me, this probably has more to do with an underlying mood> disorder in my case. I do permit myself to have time to decompress in> solitude rather than trying to force myself to go until I crash. For> example I can't go from family/friends holiday event to event toevent.> I just have to insist on staying at home alone with a good book> sometimes, even if people give me flack for it.> >> > I pray you find some relief for your daughter soon.> >> >> >> > ________________________________> > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@> > To: Soundsensitivity > > Sent: Tuesday, December 13, 2011 7:42 AM> > Subject: I am so sad!!> >> >> >> > My name is Bernadette. I have been a member now for over a year. I> have written my story about my> > daughter who is now 14 before on this site. Wow things keepchanging> so rapidly. As of last November 2010 she no longer goes to school.> While talking to my daughter with the tv on, the Today Show story came> on and we couldn't believe it. We both watched in tears. Since then> she has really> > tried to stop isolating herself which she was doing daily. She was> just living> > in her bed and wouldn't come out. After the Today show, she got the> courage to> > start to go out a little more with some friends. She startedtutering> and her quality of life> > started to improve. Anyway she also agreed to go back tocounseling.> She finally found a therapist she really liked. They also made hersee> a psychiatrist in the> > same practice. The doctor wanted to start my daughter back on meds> for her anxiety. Well> > my daughter agreed and after 3 weeks on the medicine she felt likeshe> wanted to> > kill herself. We put her in the hospital to wean her off but tokeep> her there> > they said she had to be put back on medicine otherwise insurance> wouldn't cover> > it. (which we finally got because she was always denied insurance)> Anyway she> > started a new med and now the place where she goes to therapy and> really likes,> > has refused to take her back. They said she is too high risk. Whodo> therapists> > help?...people who bite their nails? She needs help and they are> denying> > her to return. So she is coming out of the hospital on meds and I> have to start all over> > again looking for help. They are the ones that started her on> medicine!! She> > is that percent of people who get suicidal thoughts when on> antidepressants.> > I am so sad for her, She has seen soooooo many doctors and has been> laughed at> > by so many and has been asked never to return by 3. You would not> believe what they have said to her this time too. Two> > doctors at the hospital asked if she was doing this for attention.> When I told the doctor at the hospital she called> > me to come home from work because she said the medicine was givingher> the> > courage to kill herself..... the doctor said that it sounded too> textbook and that> > there was no way she said that herself. I told him, why would shelie> about how> > she feels?? On the plus side the medicine gave her the courage toeat> with me> > for the first time in about 4 or 5 years. Anyway my daughter is so> strong and I> > am so proud of her. Here is my question for all of you. This washer> pattern> > even not on meds....My daughter stresses out so much about eventsshe> has to attend (if> > she has the courage to leave the house and go) but it takes sooomuch> courage that she crashes the> > very next day for days or weeks. Does this happen to anyone> else?...where you> > hold it together so well that you crash immediately after?? (Iwrote> up to this part the other day) Well they released her out of the> hospital yesterday. My husband and I went to meet with another Doctor> who specializes in DBT last night. Anyway it was horrific!!!!!! She> did not believe any word we said, she couldn't believe my daughter> doesn't eat with me. She also said that the people who appeared onthe> today show might have had other motives like money. I was like,> WHAT????? She also said to me," boy you irritate alot of people inyour> family." I said I would never give up on my daughter but OMG all the> professionals I have met frustrate me so much. I feel so sorry for my> daughter and all of you who suffer with this. I can't find any helpout> there. They sent her home on meds but now I can't find a doctor who> wants to see her because they said she is high risk and they don'tknow> how to help her. She only has 30 days of> > medicine then what? I have to wean her off myself without help> because no one wants to see her. I am so sad. I don't even know if> this makes any sense but I had to vent...because no one else will> believe us or help us.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 Isn't it amazing? We feel the same way. Thanks for listening. > > > > > > Hi Bernadette, > > > It sounds to me like you are getting some very bad professional > help. > > I am shocked! that doctors are turning her away because she is too > " high > > risk " ? Is that legal? > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > transitioning onto some medications. It has to do with the serotonin > as > > I understand it, I am very sensitive to serotonin. (this is a real > > oversimplication of the chemical problem I am sure). People who are > > sensitive to serotonin can also experience an increase anxiety instead > > of a decrease with the medication. After a bad episode with the drug > > effexor, my Doctor put me on an older medication, a tricyclic > > anti-depressant, which were the type of antidepressants used before > the > > SSRIs came out. It has less of an effect on serotonin which is why I > > could tolerate it better. If you wean her off the meds she is on now, > I > > would suggest going very very slowly down on the dosages, I used to > even > > split pills into little fragments. My doctor said I have a very > reactive > > system, the doctor before him did not believe this was > > possible(obviously it was and is) I am now on a SSRI called Celexa, > > which has a much > > > more selective action on the serotonin probably why I don't have > the > > side effects of suicidal thoughts or anxiety. Of course everyone > reacts > > to the drugs differently > > > > > > > > > If your daughter does go back onto a new med, I would suggest doing > it > > very very slowly, now that I understand how sensitive I am to > serotonin, > > I understand why I sometimes initially feel worse transitioning onto a > > med, and tell myself it will eventually go away once I adjust, which > it > > usually does. If it doesn't go away or it is way to strong of a > > reaction, then it is not the drug for me and I have to tell the doctor > > right away. > > > > > > You are such a great mother for listening and believing your > daughter > > when the doctors are telling you otherwise. I hope you can find a > > doctor who is a better fit or a therapist who is willing to work with > > your daughter without her being medicated, if medication is only > making > > her worse. Maybe insisting that the current or next doctor/therapist > > speak to Dr. , will help plead your case. > > > > > > I am only sharing my own experience as a patient here, so please do > > not take anything i say as medical advice for your daughter. I know > how > > frustating it is trying to find treatment for this what can be a very > > incapacitating sound sensitivity. > > > > > > I do have the problem with crashing after stressful times. though > > since my moods have been stablizied on medication, it is less of a > > problem for me, this probably has more to do with an underlying mood > > disorder in my case. I do permit myself to have time to decompress in > > solitude rather than trying to force myself to go until I crash. For > > example I can't go from family/friends holiday event to event to > event. > > I just have to insist on staying at home alone with a good book > > sometimes, even if people give me flack for it. > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > ________________________________ > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > To: Soundsensitivity > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > Subject: I am so sad!! > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > > have written my story about my > > > daughter who is now 14 before on this site. Wow things keep > changing > > so rapidly. As of last November 2010 she no longer goes to school. > > While talking to my daughter with the tv on, the Today Show story came > > on and we couldn't believe it. We both watched in tears. Since then > > she has really > > > tried to stop isolating herself which she was doing daily. She was > > just living > > > in her bed and wouldn't come out. After the Today show, she got the > > courage to > > > start to go out a little more with some friends. She started > tutering > > and her quality of life > > > started to improve. Anyway she also agreed to go back to > counseling. > > She finally found a therapist she really liked. They also made her > see > > a psychiatrist in the > > > same practice. The doctor wanted to start my daughter back on meds > > for her anxiety. Well > > > my daughter agreed and after 3 weeks on the medicine she felt like > she > > wanted to > > > kill herself. We put her in the hospital to wean her off but to > keep > > her there > > > they said she had to be put back on medicine otherwise insurance > > wouldn't cover > > > it. (which we finally got because she was always denied insurance) > > Anyway she > > > started a new med and now the place where she goes to therapy and > > really likes, > > > has refused to take her back. They said she is too high risk. Who > do > > therapists > > > help?...people who bite their nails? She needs help and they are > > denying > > > her to return. So she is coming out of the hospital on meds and I > > have to start all over > > > again looking for help. They are the ones that started her on > > medicine!! She > > > is that percent of people who get suicidal thoughts when on > > antidepressants. > > > I am so sad for her, She has seen soooooo many doctors and has been > > laughed at > > > by so many and has been asked never to return by 3. You would not > > believe what they have said to her this time too. Two > > > doctors at the hospital asked if she was doing this for attention. > > When I told the doctor at the hospital she called > > > me to come home from work because she said the medicine was giving > her > > the > > > courage to kill herself..... the doctor said that it sounded too > > textbook and that > > > there was no way she said that herself. I told him, why would she > lie > > about how > > > she feels?? On the plus side the medicine gave her the courage to > eat > > with me > > > for the first time in about 4 or 5 years. Anyway my daughter is so > > strong and I > > > am so proud of her. Here is my question for all of you. This was > her > > pattern > > > even not on meds....My daughter stresses out so much about events > she > > has to attend (if > > > she has the courage to leave the house and go) but it takes sooo > much > > courage that she crashes the > > > very next day for days or weeks. Does this happen to anyone > > else?...where you > > > hold it together so well that you crash immediately after?? (I > wrote > > up to this part the other day) Well they released her out of the > > hospital yesterday. My husband and I went to meet with another Doctor > > who specializes in DBT last night. Anyway it was horrific!!!!!! She > > did not believe any word we said, she couldn't believe my daughter > > doesn't eat with me. She also said that the people who appeared on > the > > today show might have had other motives like money. I was like, > > WHAT????? She also said to me, " boy you irritate alot of people in > your > > family. " I said I would never give up on my daughter but OMG all the > > professionals I have met frustrate me so much. I feel so sorry for my > > daughter and all of you who suffer with this. I can't find any help > out > > there. They sent her home on meds but now I can't find a doctor who > > wants to see her because they said she is high risk and they don't > know > > how to help her. She only has 30 days of > > > medicine then what? I have to wean her off myself without help > > because no one wants to see her. I am so sad. I don't even know if > > this makes any sense but I had to vent...because no one else will > > believe us or help us. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 Isn't it amazing? We feel the same way. Thanks for listening. > > > > > > Hi Bernadette, > > > It sounds to me like you are getting some very bad professional > help. > > I am shocked! that doctors are turning her away because she is too > " high > > risk " ? Is that legal? > > > > > > > > > I am one in the minority who can get suicidal thoughts while > > transitioning onto some medications. It has to do with the serotonin > as > > I understand it, I am very sensitive to serotonin. (this is a real > > oversimplication of the chemical problem I am sure). People who are > > sensitive to serotonin can also experience an increase anxiety instead > > of a decrease with the medication. After a bad episode with the drug > > effexor, my Doctor put me on an older medication, a tricyclic > > anti-depressant, which were the type of antidepressants used before > the > > SSRIs came out. It has less of an effect on serotonin which is why I > > could tolerate it better. If you wean her off the meds she is on now, > I > > would suggest going very very slowly down on the dosages, I used to > even > > split pills into little fragments. My doctor said I have a very > reactive > > system, the doctor before him did not believe this was > > possible(obviously it was and is) I am now on a SSRI called Celexa, > > which has a much > > > more selective action on the serotonin probably why I don't have > the > > side effects of suicidal thoughts or anxiety. Of course everyone > reacts > > to the drugs differently > > > > > > > > > If your daughter does go back onto a new med, I would suggest doing > it > > very very slowly, now that I understand how sensitive I am to > serotonin, > > I understand why I sometimes initially feel worse transitioning onto a > > med, and tell myself it will eventually go away once I adjust, which > it > > usually does. If it doesn't go away or it is way to strong of a > > reaction, then it is not the drug for me and I have to tell the doctor > > right away. > > > > > > You are such a great mother for listening and believing your > daughter > > when the doctors are telling you otherwise. I hope you can find a > > doctor who is a better fit or a therapist who is willing to work with > > your daughter without her being medicated, if medication is only > making > > her worse. Maybe insisting that the current or next doctor/therapist > > speak to Dr. , will help plead your case. > > > > > > I am only sharing my own experience as a patient here, so please do > > not take anything i say as medical advice for your daughter. I know > how > > frustating it is trying to find treatment for this what can be a very > > incapacitating sound sensitivity. > > > > > > I do have the problem with crashing after stressful times. though > > since my moods have been stablizied on medication, it is less of a > > problem for me, this probably has more to do with an underlying mood > > disorder in my case. I do permit myself to have time to decompress in > > solitude rather than trying to force myself to go until I crash. For > > example I can't go from family/friends holiday event to event to > event. > > I just have to insist on staying at home alone with a good book > > sometimes, even if people give me flack for it. > > > > > > I pray you find some relief for your daughter soon. > > > > > > > > > > > > ________________________________ > > > From: wouldlovetofindacurefor4s wouldlovetofindacurefor4s@ > > > To: Soundsensitivity > > > Sent: Tuesday, December 13, 2011 7:42 AM > > > Subject: I am so sad!! > > > > > > > > > > > > My name is Bernadette. I have been a member now for over a year. I > > have written my story about my > > > daughter who is now 14 before on this site. Wow things keep > changing > > so rapidly. As of last November 2010 she no longer goes to school. > > While talking to my daughter with the tv on, the Today Show story came > > on and we couldn't believe it. We both watched in tears. Since then > > she has really > > > tried to stop isolating herself which she was doing daily. She was > > just living > > > in her bed and wouldn't come out. After the Today show, she got the > > courage to > > > start to go out a little more with some friends. She started > tutering > > and her quality of life > > > started to improve. Anyway she also agreed to go back to > counseling. > > She finally found a therapist she really liked. They also made her > see > > a psychiatrist in the > > > same practice. The doctor wanted to start my daughter back on meds > > for her anxiety. Well > > > my daughter agreed and after 3 weeks on the medicine she felt like > she > > wanted to > > > kill herself. We put her in the hospital to wean her off but to > keep > > her there > > > they said she had to be put back on medicine otherwise insurance > > wouldn't cover > > > it. (which we finally got because she was always denied insurance) > > Anyway she > > > started a new med and now the place where she goes to therapy and > > really likes, > > > has refused to take her back. They said she is too high risk. Who > do > > therapists > > > help?...people who bite their nails? She needs help and they are > > denying > > > her to return. So she is coming out of the hospital on meds and I > > have to start all over > > > again looking for help. They are the ones that started her on > > medicine!! She > > > is that percent of people who get suicidal thoughts when on > > antidepressants. > > > I am so sad for her, She has seen soooooo many doctors and has been > > laughed at > > > by so many and has been asked never to return by 3. You would not > > believe what they have said to her this time too. Two > > > doctors at the hospital asked if she was doing this for attention. > > When I told the doctor at the hospital she called > > > me to come home from work because she said the medicine was giving > her > > the > > > courage to kill herself..... the doctor said that it sounded too > > textbook and that > > > there was no way she said that herself. I told him, why would she > lie > > about how > > > she feels?? On the plus side the medicine gave her the courage to > eat > > with me > > > for the first time in about 4 or 5 years. Anyway my daughter is so > > strong and I > > > am so proud of her. Here is my question for all of you. This was > her > > pattern > > > even not on meds....My daughter stresses out so much about events > she > > has to attend (if > > > she has the courage to leave the house and go) but it takes sooo > much > > courage that she crashes the > > > very next day for days or weeks. Does this happen to anyone > > else?...where you > > > hold it together so well that you crash immediately after?? (I > wrote > > up to this part the other day) Well they released her out of the > > hospital yesterday. My husband and I went to meet with another Doctor > > who specializes in DBT last night. Anyway it was horrific!!!!!! She > > did not believe any word we said, she couldn't believe my daughter > > doesn't eat with me. She also said that the people who appeared on > the > > today show might have had other motives like money. I was like, > > WHAT????? She also said to me, " boy you irritate alot of people in > your > > family. " I said I would never give up on my daughter but OMG all the > > professionals I have met frustrate me so much. I feel so sorry for my > > daughter and all of you who suffer with this. I can't find any help > out > > there. They sent her home on meds but now I can't find a doctor who > > wants to see her because they said she is high risk and they don't > know > > how to help her. She only has 30 days of > > > medicine then what? I have to wean her off myself without help > > because no one wants to see her. I am so sad. I don't even know if > > this makes any sense but I had to vent...because no one else will > > believe us or help us. > > > > > > Quote Link to comment Share on other sites More sharing options...
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