Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi rebeccaThe how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. Sent from my Verizon Wireless BlackBerryDate: Sun, 14 Mar 2010 09:02:22 -0500To: <Hepatitis_C_Central >Subject: New member Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?) My only contact (to my knowledge) is with my Hep C positive husband. I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt. Thanks for being here to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2010 Report Share Posted March 19, 2010 Me too. I am 53 and it took 30 years to cause damage. My advice is dont go so long to get treatment Subject: Re: New memberTo: Hepatitis_C_Central Date: Sunday, March 14, 2010, 4:00 PM Hi rebeccaThe how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. Sent from my Verizon Wireless BlackBerry From: "" <critterlady@ nctc.net> Date: Sun, 14 Mar 2010 09:02:22 -0500 To: <Hepatitis_C_ Central@yahoogro ups.com> Subject: [Hepatitis_C_ Central] New member Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?) My only contact (to my knowledge) is with my Hep C positive husband. I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt. Thanks for being here to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 I agree with the advice, . I had Hep C for 25 years at the time of my transplant, and I never did treatment. The transplant was two years ago, and I am now 47. I did treatment after transplant, and am now undetectable. Penny > > > > Subject: Re: New member > To: Hepatitis_C_Central > Date: Sunday, March 14, 2010, 4:00 PM > > >  > > > > Hi rebecca > The how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. > Sent from my Verizon Wireless BlackBerry > > > From: " " <critterlady@ nctc.net> > Date: Sun, 14 Mar 2010 09:02:22 -0500 > To: <Hepatitis_C_ Central@yahoogro ups.com> > Subject: [Hepatitis_C_ Central] New member > >  > > > Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?)  My only contact (to my knowledge) is with my Hep C positive husband. >  > I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt. >  > Thanks for being here to help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Hi Penny! why do they make you do treatment again? What state were you in and how hard was it to get a liver? Also did you have the amonia problem. I have had it 3 times and Friday they went down my throat to tie to veins off? xx Subject: Re: New memberTo: Hepatitis_C_Central Date: Saturday, March 20, 2010, 5:19 PM I agree with the advice, . I had Hep C for 25 years at the time of my transplant, and I never did treatment. The transplant was two years ago, and I am now 47. I did treatment after transplant, and am now undetectable.Penny> > > From: sslehr2@... <sslehr2@... >> Subject: Re: [Hepatitis_C_ Central] New member> To: Hepatitis_C_ Central@yahoogro ups.com> Date: Sunday, March 14, 2010, 4:00 PM> > >  > > > > Hi rebecca> The how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. > Sent from my Verizon Wireless BlackBerry> > > From: "" <critterlady@ nctc.net> > Date: Sun, 14 Mar 2010 09:02:22 -0500> To: <Hepatitis_C_ Central@yahoogro ups.com>> Subject: [Hepatitis_C_ Central] New member> >  > > > Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?)  My only contact (to my knowledge) is with my Hep C positive husband. >  > I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt.>  > Thanks for being here to help.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 To get a liver it goes by your MELD score. My brother never got a chance for a liver transplant. His MELD was not high enough. I've heard they are changing how it is calculated. I am assuming Penny did NOT do treatment prior to the transplant, then after the liver transplant she did treatment. There are lots of links on my page. Hi Penny! why do they make you do treatment again? What state were you in and how hard was it to get a liver? Also did you have the amonia problem. I have had it 3 times and Friday they went down my throat to tie to veins off? xx Subject: Re: New member To: Hepatitis_C_Central Date: Saturday, March 20, 2010, 5:19 PM I agree with the advice, . I had Hep C for 25 years at the time of my transplant, and I never did treatment. The transplant was two years ago, and I am now 47. I did treatment after transplant, and am now undetectable. Penny > > > From: sslehr2@... <sslehr2@... > > Subject: Re: [Hepatitis_C_ Central] New member > To: Hepatitis_C_ Central@yahoogro ups.com > Date: Sunday, March 14, 2010, 4:00 PM > > >  > > > > Hi rebecca > The how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. > Sent from my Verizon Wireless BlackBerry > > > From: "" <critterlady@ nctc.net> > Date: Sun, 14 Mar 2010 09:02:22 -0500 > To: <Hepatitis_C_ Central@yahoogro ups.com> > Subject: [Hepatitis_C_ Central] New member > >  > > > Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?)  My only contact (to my knowledge) is with my Hep C positive husband. >  > I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt. >  > Thanks for being here to help. > > No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.791 / Virus Database: 271.1.1/2761 - Release Date: 03/21/10 02:33:00 -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Bill is right. I didn't do treatment before the transplant, only after. The transplant doctors told me the treatment has to be done after transplant even if you did it before transplant because the Hep C can come back after transplant much faster and stronger. It has a lot to do with the immunosuppressive drugs. I live in Wisconsin and it took a month for me to get a liver. My MELD score was 29 at the time of transplant. I didn't have a problem with my ammonia until shortly before the transplant. I had a few veins (varices) tied off too in my esophagus. Now in addition to the INR, Creatinine, and Bilirubin lab results to calculate the MELD score, they also use Sodium to calculate it, I've heard. Penny > > > > > > > > > From: sslehr2@ <sslehr2@ > > > > Subject: Re: [Hepatitis_C_ Central] New member > > > To: Hepatitis_C_ Central@yahoogro ups.com > > <http://us.mc655.mail.yahoo.com/mc/compose?to=Hepatitis_C_Central%40yahoogroups.\ com> > > > Date: Sunday, March 14, 2010, 4:00 PM > > > > > > > > >  > > > > > > > > > > > > Hi rebecca > > > The how does not matter. And unprotected sex is very remote. Now > > you jez gotta take better care of yourself an deal with it. Been > > with it 30 yrs. Am 53. Hang in there. > > > Sent from my Verizon Wireless BlackBerry > > > > > > > > > From: " " <critterlady@ nctc.net> > > > Date: Sun, 14 Mar 2010 09:02:22 -0500 > > > To: <Hepatitis_C_ Central@yahoogro ups.com> > > > Subject: [Hepatitis_C_ Central] New member > > > > > >  > > > > > > > > > Hello all. I was recently told that I have tested positive for > > Hep C. More tests to come. I do have some concerns about the > > HOW of my condition but it looks like monogamous unprotected > > sexual contact has just about been ruled out. (?)  My only > > contact (to my knowledge) is with my Hep C positive husband. > > >  > > > I know that at this point the xmission 'how' may be moot but I'm > > having trouble working through this. I recently had more > > bloodwork done (and an unrelated CT) that showed super low vitamin > > D levels and I'll find out more at the end of the month at my appt. > > >  > > > Thanks for being here to help. > > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.791 / Virus Database: 271.1.1/2761 - Release Date: 03/21/10 02:33:00 > > > > > > > -- > Bill Eastman > www.ke5asu.com/links.html <http://www.ke5asu.com/links.html> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 This site explains how the transplant waiting list works and has a link to a MELD calculator. You'll need to have a copy of your lab results to enter the information. Your team can tell you what your MELD score is. http://www.cpmc.org/advanced/liver/patients/topics/MELD.html Bill is right. I didn't do treatment before the transplant, only after. The transplant doctors told me the treatment has to be done after transplant even if you did it before transplant because the Hep C can come back after transplant much faster and stronger. It has a lot to do with the immunosuppressive drugs. I live in Wisconsin and it took a month for me to get a liver. My MELD score was 29 at the time of transplant. I didn't have a problem with my ammonia until shortly before the transplant. I had a few veins (varices) tied off too in my esophagus. Now in addition to the INR, Creatinine, and Bilirubin lab results to calculate the MELD score, they also use Sodium to calculate it, I've heard. Penny > > > From: sslehr2@ <sslehr2@ > > Subject: Re: [Hepatitis_C_ Central] New member > To: Hepatitis_C_ Central@yahoogro ups.com <http://us.mc655.mail.yahoo.com/mc/compose?to=Hepatitis_C_Central%40yahoogroups.com> > Date: Sunday, March 14, 2010, 4:00 PM > > >  > > > > Hi rebecca > The how does not matter. And unprotected sex is very remote. Now you jez gotta take better care of yourself an deal with it. Been with it 30 yrs. Am 53. Hang in there. > Sent from my Verizon Wireless BlackBerry > > > From: "" <critterlady@ nctc.net> > Date: Sun, 14 Mar 2010 09:02:22 -0500 > To: <Hepatitis_C_ Central@yahoogro ups.com> > Subject: [Hepatitis_C_ Central] New member > >  > > > Hello all. I was recently told that I have tested positive for Hep C. More tests to come. I do have some concerns about the HOW of my condition but it looks like monogamous unprotected sexual contact has just about been ruled out. (?)  My only contact (to my knowledge) is with my Hep C positive husband. >  > I know that at this point the xmission 'how' may be moot but I'm having trouble working through this. I recently had more bloodwork done (and an unrelated CT) that showed super low vitamin D levels and I'll find out more at the end of the month at my appt. >  > Thanks for being here to help. > > No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.791 / Virus Database: 271.1.1/2761 - Release Date: 03/21/10 02:33:00 -- Bill Eastman www.ke5asu.com/links.html <http://www.ke5asu.com/links.html> ------------------------------------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a counselor who works with K-5 and I've noticed signed of anxiety since she was a toddler as well as a few OCD behaviors. None of these behaviors have ever effected her outside of the home and no one noticed but me. Then suddenly she was hit with these panic attacks of worrying that something would happened to our family and herself. We have now evolved into physical symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned into rages that last 4-6 hours. After several trips to urgent care, the ER and her pediatrician we went to a counselor who referred us to a psy. We started antidepressants but are having a hard time getting her calm enough to actually get a full nights sleep. She is taking something to help her sleep but one night it works and then one night it doesn't. I am so at my wits end!! I know I shouldn't be angry at her and it's the OCD that's doing this but some of the behaviors seem so minipulative that I can't help but feel like she is putting on a bit of a show at times. I just sent my husband out to buy the 2 books that were recommended. That alone was hlpeful but also to know I'm not the only mother that has become the target for there child's anger. My husband just returned from Iraq and he seems to be the only one who can calm her down. (by the way the psy. doen't think his absence or return have anything to do with this) I know there is a light at the end but I too feel like I have lost my sweet, happy fun daughter. The psy.said it she continues to have these rages that we might have to put her in the hospital to get this under control. Have any of you had to get control of this by putting them in the hospital????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Hi, welcome! We've had recent discussions re hospitalization. Heidi has been posting about her son, who should come home Tuesday. Others have also had to before, you may see some responses relating to that to Heidi. So sorry your daughter (and family) is going through this. Can you tell if her rages start due to OCD's demands? Like, is she trying to finish some ritual/compulsion or maybe mom/dad aren't doing as OCD wants you to do...? I had to remind myself all the time that it was OCD I was mad at, fed up with. Had to apologize to my son a few times too. Even tell him that I know it felt to him sometimes that I was mad at him, but it was really the OCD. 's OCD began in 6th grade, minor quirks before that. His began with rituals/compulsions and he had a feeling something bad would happen to him if he didn't do them, and then he also had to get a " just right " feeling (I guess to finish the ritual/compulsion). Is she having problems letting you out of her sight since she's worried something might happen? What are some of the behaviors she's doing? Bedtime is often a big issue due to OCD. When started Celexa, he said he had a hard time with sleep at first but that subsided. It actually later made him feel tired, he took naps! We all wish medication (or anything we try) would work the first day. It varies with everyone as to how long it takes before medication begins to help. I've read some noticed improvement the first week or two, while you'll read to give medication a 12-week trial period (part of that is due to building up the dosage to a therapeutic level and then having them at that therapeutic level for a time). With 's Celexa, it was really the 16th week when lots of improvement began to come I felt, though saw some more subtle signs it was helping before that. Keep us updated, and I'm glad you found our group! single mom, 3 sons , 21, with OCD, Aspergers, dysgraphia > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a counselor who works with K-5 and I've noticed signed of anxiety since she was a toddler as well as a few OCD behaviors. None of these behaviors have ever effected her outside of the home and no one noticed but me. Then suddenly she was hit with these panic attacks of worrying that something would happened to our family and herself. We have now evolved into physical symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned into Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Unfortunately yes. My almost nine year old son is currently in an emergency placement that he " stepped down " to from the hospital on Monday. He has been out of the home basically since July 26th (he came home briefly for a day and half but had to be placed again). While it is an agonizing decision, and not one I made lightly, I am hoping it will help stabilize him. While he has been there, people have been also working behind the scenes to help us set up a better " crisis plan " for when his behavior is unmanageable at home. We have a new Intensive Needs Family Worker who will be starting next week when he is discharged, to work closely with his psychiatrist and me (I am a single mom) to help come up with more ideas for home. I have worked in this special education field with kids with intense behavior for ten years, and my son did not fit that category until recently. I have a lot of " tools " in my toolbox. Unfortunately, none of them seemed to work when he too was worried about something happening to himself or me. You have come to the right place for support. People here know what it feels like and are willing to listen, give advice, or offer empathy. > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a counselor who works with K-5 and I've noticed signed of anxiety since she was a toddler as well as a few OCD behaviors. None of these behaviors have ever effected her outside of the home and no one noticed but me. Then suddenly she was hit with these panic attacks of worrying that something would happened to our family and herself. We have now evolved into physical symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned into rages that last 4-6 hours. After several trips to urgent care, the ER and her pediatrician we went to a counselor who referred us to a psy. We started antidepressants but are having a hard time getting her calm enough to actually get a full nights sleep. She is taking something to help her sleep but one night it works and then one night it doesn't. I am so at my wits end!! I know I shouldn't be angry at her and it's the OCD that's doing this but some of the behaviors seem so minipulative that I can't help but feel like she is putting on a bit of a show at times. I just sent my husband out to buy the 2 books that were recommended. That alone was hlpeful but also to know I'm not the only mother that has become the target for there child's anger. My husband just returned from Iraq and he seems to be the only one who can calm her down. (by the way the psy. doen't think his absence or return have anything to do with this) I know there is a light at the end but I too feel like I have lost my sweet, happy fun daughter. The psy.said it she continues to have these rages that we might have to put her in the hospital to get this under control. Have any of you had to get control of this by putting them in the hospital????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Hi there. The OCD can " burst " and become so big, so fast, at any age. Our son was anxious since he was young, and had quirky stuff, but no sign of OCD that anyone would have seen, including us, but I know now they were there(he's told us), but mild and would come and go. Ours was 15 when it seemed to come on overnight and was very severe and around the clock. Sleep was impossible. The level of anxiety that comes with this is terrifying for them, and to witness. The panic attacks may well be the severe anxiety that is created by the obsessive thoughts that they can't stop and that can be horrifying for them. They can very much be manipulative and it is very frustrating and I can understand your feeling angry at your child and then feeling bad about feeling angry. Been there, done that. Think it kind of goes with the whole circus of OCD, it sucks in everyone, and everyone is at it's mercy. We dealt with awful raging and behavior too. We did have to hospitalize at one point. Hospitalization can be good to sort out medications and for assessment of the whole situation if needed. It is often based on safety concerns. If you reach a point where you cannot cope and need to find some answers, and this is not being achieved out of hospital through professionals, hospitalization may be helpful. I guess it really depends on what is available at the hospital, and it's good to look into this to help you decide. Not sure when your daughter takes the anti-depressant? If it is stimulating it would be better not to take at night. It is quite common that it affects their sleep though, either way. Mind you, so do the obsessive thoughts that take over at night because their are no distractions! Melatonin is something that helps many with sleep, I take it myself. I have read others using things like benadryl. It took a while, but once the medication helped dial back the intensity of the OCD our son started sleeping. Before that he said he even dreamed OCD. It does usually take up to three months for the medication to have full effect, and can take longer. I found the longer our son was on it the more impact it had and he became calmer too. It's good to go slowly with the dosing though, so you can see the effects and find the best dose. We went too fast and got in trouble at higher doses, ours does best on a low dose. It's good to keep a journal and track it all, so you can see patterns. It's really hard to feel like you have lost your child to this life stealing disorder. Know that when she understands what she needs to do to manage it everything will calm down. I hope the medication starts to have benefits soon too. Hang in there! Remember your daughter is in there still, the monster is the OCD!!! Hugs to you! Barb Son, 19, OCD/Spectrum disorders - doing well now! > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a counselor who works with K-5 and I've noticed signed of anxiety since she was a toddler as well as a few OCD behaviors. None of these behaviors have ever effected her outside of the home and no one noticed but me. Then suddenly she was hit with these panic attacks of worrying that something would happened to our family and herself. We have now evolved into physical symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned into rages that last 4-6 hours. After several trips to urgent care, the ER and her pediatrician we went to a counselor who referred us to a psy. We started antidepressants but are having a hard time getting her calm enough to actually get a full nights sleep. She is taking something to help her sleep but one night it works and then one night it doesn't. I am so at my wits end!! I know I shouldn't be angry at her and it's the OCD that's doing this but some of the behaviors seem so minipulative that I can't help but feel like she is putting on a bit of a show at times. I just sent my husband out to buy the 2 books that were recommended. That alone was hlpeful but also to know I'm not the only mother that has become the target for there child's anger. My husband just returned from Iraq and he seems to be the only one who can calm her down. (by the way the psy. doen't think his absence or return have anything to do with this) I know there is a light at the end but I too feel like I have lost my sweet, happy fun daughter. The psy.said it she continues to have these rages that we might have to put her in the hospital to get this under control. Have any of you had to get control of this by putting them in the hospital????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Yes, we hospitalized our son twice and accomplished nothing. He behaved pretty well while in the hospital and as soon as he came home the behavior continued. I think the answer depends on what the doctor at the hospital thinks (your pdoc may not be the one treated your daughter at the hospital). I am still looking for answers. Hope things get better soon Bonnie > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a counselor who works with K-5 and I've noticed signed of anxiety since she was a toddler as well as a few OCD behaviors. None of these behaviors have ever effected her outside of the home and no one noticed but me. Then suddenly she was hit with these panic attacks of worrying that something would happened to our family and herself. We have now evolved into physical symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned into rages that last 4-6 hours. After several trips to urgent care, the ER and her pediatrician we went to a counselor who referred us to a psy. We started antidepressants but are having a hard time getting her calm enough to actually get a full nights sleep. She is taking something to help her sleep but one night it works and then one night it doesn't. I am so at my wits end!! I know I shouldn't be angry at her and it's the OCD that's doing this but some of the behaviors seem so minipulative that I can't help but feel like she is putting on a bit of a show at times. I just sent my husband out to buy the 2 books that were recommended. That alone was hlpeful but also to know I'm not the only mother that has become the target for there child's anger. My husband just returned from Iraq and he seems to be the only one who can calm her down. (by the way the psy. doen't think his absence or return have anything to do with this) I know there is a light at the end but I too feel like I have lost my sweet, happy fun daughter. The psy.said it she continues to have these rages that we might have to put her in the hospital to get this under control. Have any of you had to get control of this by putting them in the hospital????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Hi, I'm new here too. It seems that many of you are in the US. I'm in the UK and treatments here appear to be very different. My son who is 12 has OCD and is currently being assessed for Aspergers. My son too appeared to develop these symptoms overnight, however looking back there were always traits - once when we were telling him off when he was 4 he shouted 'stop it - I'm having a heart attack!' It was funny then, but looking back it was not. There were other things too. At the moment it is school summer hols and he is at home all day andhis symptoms are driving me spare! He has to supervise cooking, choose a plate from a selection of about 6, spends about 15mins choosing cutlery and if he even suspects that the food has been 'contaminated' in any way then he refuses to eat. He seems to be constantly demanding attention, even through the night, waking me up throughout the night and telling me to sanitise my hands. There is a ritual he has to go through to brush his teeth and that takes about half an hour. I know he cant help it and I feel really angry and guilty about resenting his constant demands. The OCD seems to be ruling the house at the moment. He has a sister of 15 also with Aspergers and she is finding it really hard to cope with him and is increasingly withdrawing into her room and blames him for the way things are at the moment. Their dad is a lorry driver and is often away. When he returns he finds it difficult as we have sort of settled into a routine at meal times and doesn't realise or forgets the lengths to which we have to go to ensure he eats. At this very moment he is using disinfecting wipes and 'sanitising' every single page in a magazine he wants to read! LOL. I'm wondering if he will ever let me go back to work in September!!!! Louise On Fri, Aug 13, 2010 at 5:02 AM, bnesrallah wrote: > > > Hi there. The OCD can " burst " and become so big, so fast, at any age. Our > son was anxious since he was young, and had quirky stuff, but no sign of OCD > that anyone would have seen, including us, but I know now they were > there(he's told us), but mild and would come and go. > > Ours was 15 when it seemed to come on overnight and was very severe and > around the clock. Sleep was impossible. The level of anxiety that comes with > this is terrifying for them, and to witness. The panic attacks may well be > the severe anxiety that is created by the obsessive thoughts that they can't > stop and that can be horrifying for them. > > They can very much be manipulative and it is very frustrating and I can > understand your feeling angry at your child and then feeling bad about > feeling angry. Been there, done that. Think it kind of goes with the whole > circus of OCD, it sucks in everyone, and everyone is at it's mercy. > > We dealt with awful raging and behavior too. We did have to hospitalize at > one point. Hospitalization can be good to sort out medications and for > assessment of the whole situation if needed. It is often based on safety > concerns. > > If you reach a point where you cannot cope and need to find some answers, > and this is not being achieved out of hospital through professionals, > hospitalization may be helpful. I guess it really depends on what is > available at the hospital, and it's good to look into this to help you > decide. > > Not sure when your daughter takes the anti-depressant? If it is stimulating > it would be better not to take at night. It is quite common that it affects > their sleep though, either way. Mind you, so do the obsessive thoughts that > take over at night because their are no distractions! > > Melatonin is something that helps many with sleep, I take it myself. I have > read others using things like benadryl. It took a while, but once the > medication helped dial back the intensity of the OCD our son started > sleeping. Before that he said he even dreamed OCD. > > It does usually take up to three months for the medication to have full > effect, and can take longer. I found the longer our son was on it the more > impact it had and he became calmer too. It's good to go slowly with the > dosing though, so you can see the effects and find the best dose. We went > too fast and got in trouble at higher doses, ours does best on a low dose. > It's good to keep a journal and track it all, so you can see patterns. > > It's really hard to feel like you have lost your child to this life > stealing disorder. Know that when she understands what she needs to do to > manage it everything will calm down. I hope the medication starts to have > benefits soon too. > > Hang in there! Remember your daughter is in there still, the monster is the > OCD!!! > > Hugs to you! > Barb > Son, 19, OCD/Spectrum disorders - doing well now! > > > > > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a > counselor who works with K-5 and I've noticed signed of anxiety since she > was a toddler as well as a few OCD behaviors. None of these behaviors have > ever effected her outside of the home and no one noticed but me. Then > suddenly she was hit with these panic attacks of worrying that something > would happened to our family and herself. We have now evolved into physical > symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as > the panic attacks turned into rages that last 4-6 hours. After several trips > to urgent care, the ER and her pediatrician we went to a counselor who > referred us to a psy. We started antidepressants but are having a hard time > getting her calm enough to actually get a full nights sleep. She is taking > something to help her sleep but one night it works and then one night it > doesn't. I am so at my wits end!! I know I shouldn't be angry at her and > it's the OCD that's doing this but some of the behaviors seem so > minipulative that I can't help but feel like she is putting on a bit of a > show at times. I just sent my husband out to buy the 2 books that were > recommended. That alone was hlpeful but also to know I'm not the only mother > that has become the target for there child's anger. My husband just returned > from Iraq and he seems to be the only one who can calm her down. (by the way > the psy. doen't think his absence or return have anything to do with this) I > know there is a light at the end but I too feel like I have lost my sweet, > happy fun daughter. The psy.said it she continues to have these rages that > we might have to put her in the hospital to get this under control. Have any > of you had to get control of this by putting them in the hospital????? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Hi Louise- Each child is different. I don't know how old your fhild is, but my daughter is now 17. She showed signs of OCD at 9, diagnosed at 11. She's been on 3 different meds (none worked) now on a trial for a different med (the anti depressants didn't help her). She does get upset and frustrated at times, but she has always been an upbeat kid, so each kid handles it differently. She can't do ERP yet, but there are thing she has learned to cope with better.  Tamar Chansky's books helped a lot. We read them together (so I could edit out some of the OCD types - sometimes the kids are very suggestable) - one thing she said was to talk about the OCD differently. I used to say that my daughters OCD was a part of her brain that always lied to her. We called it her Bush brain (apologies to Republicans), it was our little code. Now that she is older we just call it her OCD brain.  We have been through 6 therapists, everytime one of them challenges her OCD too forcefully she shuts down. Frustrating . But I do see glimmers of light that come with maturity and greater self awareness. This is a marathon not a sprint. Be sure to get rest and do nuturing things for yourself so you can be the patient parent she needs. I have always been a single mom, I work 62 miles from my office on Wall Street (sounds like a make A LOT more money than I do). I am in technology so I am frequently without work. I decided to let my house go- no one will die if I don't fold the laundry or vacuum everyday - I need to keep stress free for her.  So find your bottom line.  Hope this helps. M > > Hi there and welcome. I'm new within the last couple days. I can't say > enough how helpful it is to know you're not alone. My degree is in Human > Development, so I have some understanding of this stuff. I also have > anxiety and depression myself. It's easy to " get " and understand and want > to help someone else. When it's your family, it's horrible. You think, " I > know this. How can this happen to MY kid? " We have many sleepless nights, > too. Bedtime and through the night are so difficult. Going to sleep is > torturous, and insomnia creeps in in the middle of the night. I'm sorry > you're dealing with this, too. > > Steffanie > > > > > > To: > From: anneogilvy@... > Date: Thu, 12 Aug 2010 23:39:50 +0000 > Subject: New member > > > > > > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a > counselor who works with K-5 and I've noticed signed of anxiety since she > was a toddler as well as a few OCD behaviors. None of these behaviors have > ever effected her outside of the home and no one noticed but me. Then > suddenly she was hit with these panic attacks of worrying that something > would happened to our family and herself. We have now evolved into physical > symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as > the panic attacks turned into rages that last 4-6 hours. After several trips > to urgent care, the ER and her pediatrician we went to a counselor who > referred us to a psy. We started antidepressants but are having a hard time > getting her calm enough to actually get a full nights sleep. She is taking > something to help her sleep but one night it works and then one night it > doesn't. I am so at my wits end!! I know I shouldn't be angry at her and > it's the OCD that's doing this but some of the behaviors seem so > minipulative that I can't help but feel like she is putting on a bit of a > show at times. I just sent my husband out to buy the 2 books that were > recommended. That alone was hlpeful but also to know I'm not the only mother > that has become the target for there child's anger. My husband just returned > from Iraq and he seems to be the only one who can calm her down. (by the way > the psy. doen't think his absence or return have anything to do with this) I > know there is a light at the end but I too feel like I have lost my sweet, > happy fun daughter. The psy.said it she continues to have these rages that > we might have to put her in the hospital to get this under control. Have any > of you had to get control of this by putting them in the hospital????? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 ha ha ha... that came at a good time! Heidi > > > > > Hi there and welcome. I'm new within the last couple days. I can't say > > enough how helpful it is to know you're not alone. My degree is in Human > > Development, so I have some understanding of this stuff. I also have > > anxiety and depression myself. It's easy to " get " and understand and want > > to help someone else. When it's your family, it's horrible. You think, " I > > know this. How can this happen to MY kid? " We have many sleepless nights, > > too. Bedtime and through the night are so difficult. Going to sleep is > > torturous, and insomnia creeps in in the middle of the night. I'm sorry > > you're dealing with this, too. > > > > Steffanie > > > > > > > > > > > > To: > > From: anneogilvy@... > > Date: Thu, 12 Aug 2010 23:39:50 +0000 > > Subject: New member > > > > > > > > > > > > > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a > > counselor who works with K-5 and I've noticed signed of anxiety since she > > was a toddler as well as a few OCD behaviors. None of these behaviors have > > ever effected her outside of the home and no one noticed but me. Then > > suddenly she was hit with these panic attacks of worrying that something > > would happened to our family and herself. We have now evolved into physical > > symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as > > the panic attacks turned into rages that last 4-6 hours. After several trips > > to urgent care, the ER and her pediatrician we went to a counselor who > > referred us to a psy. We started antidepressants but are having a hard time > > getting her calm enough to actually get a full nights sleep. She is taking > > something to help her sleep but one night it works and then one night it > > doesn't. I am so at my wits end!! I know I shouldn't be angry at her and > > it's the OCD that's doing this but some of the behaviors seem so > > minipulative that I can't help but feel like she is putting on a bit of a > > show at times. I just sent my husband out to buy the 2 books that were > > recommended. That alone was hlpeful but also to know I'm not the only mother > > that has become the target for there child's anger. My husband just returned > > from Iraq and he seems to be the only one who can calm her down. (by the way > > the psy. doen't think his absence or return have anything to do with this) I > > know there is a light at the end but I too feel like I have lost my sweet, > > happy fun daughter. The psy.said it she continues to have these rages that > > we might have to put her in the hospital to get this under control. Have any > > of you had to get control of this by putting them in the hospital????? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2010 Report Share Posted August 14, 2010 Hi Louise, welcome! My OCD son also has Aspergers. He's 21 now, his OCD began around age 12. Sleep - oh yes, bedtime was difficult for him, is for lots of kids due to OCD. He would have trouble getting into bed " right " and have to get up and try again, and again.... I also complained (here and to myself, sometimes to him) about having to get up for work and lack of sleep. Could be up til 1 or 2 am sometimes. On good nights he could get into bed within a few minutes, but sometimes we'd have weeks where it just took longer. Sounds like your son isn't sleeping well since he's waking you up during the night. What we found best for is to target some of the other behaviors (his rituals & compulsions and avoidance) that seemed easier to try. Therapists generally will do a hierarchy list where they list the behaviors and, say, have #1 as least anxiety-causing to #10 the most, from least difficult to most difficult, etc. And then pick something " lower " to start working on. We couldn't find a therapist near us, so just chose what we thought would be " easier. " And just picked 1 or 2 things to work on, and more or less accommodated the rest of his OC behaviors. Some of the easier things to try for was where he had to repeat some things. Like turning water faucet on/off several times or the light switch (he had a " thing " with on/off items, had to repeat). He would get " stuck " literally when touching something and would keep touching it until he got some " just right " feeling and felt nothing bad would no longer happen. That could also be minutes or hours. But what he worked on with touching, was to just " speed up " the process so he wouldn't be stuck so long; sort of a " mental process. " Being a single mom with 3 sons and working full-time, it wasn't something we actively worked on every day, as we should have, so it was a long, slow process for us. We tried nonprescription supplement first (I was hesitant about medication) and used inositol powder (in B vitamin family) and it helped after a few weeks. Inositol powder has benefited some people with their OCD but others it provides no help. We actually tried it again later for in high school and it didn't help a bit then. Anyway, we later went to an SSRI medication Celexa/citalopram and it was great, really helped too. Well this has gotten a bit long, but wanted to say " hello " and I'm glad you found our group. Helps not to feel so alone having a child with OCD! (North Carolina) > > Thanks, > > It is good to know there are others out there. Having spent the last few > days reading the posts I have realised that there are many people who are > having to deal with situations worse than mine. It is the sleepless nights > that I find the most difficult, especially if I have to get up for Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2010 Report Share Posted August 14, 2010 we've been doing Inositol for my son and me for over a month now. We haven't seen any improvement. Boo! Steffanie To: From: @... Date: Sat, 14 Aug 2010 15:24:21 +0000 Subject: Re: New member Hi Louise, welcome! My OCD son also has Aspergers. He's 21 now, his OCD began around age 12. Sleep - oh yes, bedtime was difficult for him, is for lots of kids due to OCD. He would have trouble getting into bed " right " and have to get up and try again, and again.... I also complained (here and to myself, sometimes to him) about having to get up for work and lack of sleep. Could be up til 1 or 2 am sometimes. On good nights he could get into bed within a few minutes, but sometimes we'd have weeks where it just took longer. Sounds like your son isn't sleeping well since he's waking you up during the night. What we found best for is to target some of the other behaviors (his rituals & compulsions and avoidance) that seemed easier to try. Therapists generally will do a hierarchy list where they list the behaviors and, say, have #1 as least anxiety-causing to #10 the most, from least difficult to most difficult, etc. And then pick something " lower " to start working on. We couldn't find a therapist near us, so just chose what we thought would be " easier. " And just picked 1 or 2 things to work on, and more or less accommodated the rest of his OC behaviors. Some of the easier things to try for was where he had to repeat some things. Like turning water faucet on/off several times or the light switch (he had a " thing " with on/off items, had to repeat). He would get " stuck " literally when touching something and would keep touching it until he got some " just right " feeling and felt nothing bad would no longer happen. That could also be minutes or hours. But what he worked on with touching, was to just " speed up " the process so he wouldn't be stuck so long; sort of a " mental process. " Being a single mom with 3 sons and working full-time, it wasn't something we actively worked on every day, as we should have, so it was a long, slow process for us. We tried nonprescription supplement first (I was hesitant about medication) and used inositol powder (in B vitamin family) and it helped after a few weeks. Inositol powder has benefited some people with their OCD but others it provides no help. We actually tried it again later for in high school and it didn't help a bit then. Anyway, we later went to an SSRI medication Celexa/citalopram and it was great, really helped too. Well this has gotten a bit long, but wanted to say " hello " and I'm glad you found our group. Helps not to feel so alone having a child with OCD! (North Carolina) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2010 Report Share Posted August 14, 2010 Steffanie, it took quite a few weeks for us. Lucky parents have noted improvement the first month. I think it was 2-3 months for us (this was years ago so memory blurry) but I know I wanted to try it for 12 weeks. And we just kept on with it, and the longer he was on it, the more improvement we saw. For it was a minimum of 13-14 grams a day (some people said their child did okay on less). I even gave more on bad days, sometimes he asked for more. Since you can't " overdose " on it and he wasn't on any prescription medication (otherwise I would worry about too much/overdose re serotonin), then I felt it was okay. But I'm just a mom, no doctor. We just mixed his powder in with a small cup of Kool-Aid since it's said to have a sweet taste and figured it would go well with a sugary drink. I used to joke I was the only mom giving her son Kool-Aid for breakfast! > > > we've been doing Inositol for my son and me for over a month now. We haven't seen any improvement. Boo! > > Steffanie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 I am so sorry u are going through this (and ur daughter). I have a 9 yr old son that I am worried he might one day have to go to a hospital or something. He just has no understanding that authority is authority. He has been uncontrollable and i am so worried about school. He is so obsessed with money he just last week took 40.00 from a boys wallet at the babysitters. I am sooo embarrsed and ashame. I am worried he will do this at school and they will press charges. I keep telling him that and have even thought about letting the cops talk to him. anyhow., I so wish i could give u some awsome advice to solve it but Im no help. Sorry . But i will say a prayer for ur family. Christy  ________________________________ To: Sent: Sun, August 15, 2010 1:35:21 PM Subject: Re: New member  Welcome to the group, Anne. I see you've had a lot of replies already, so just wanted to welcome you. Glad you found us. BJ > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a >counselor who works with K-5 and I've noticed signed of anxiety since she was a >toddler as well as a few OCD behaviors. None of these behaviors have ever >effected her outside of the home and no one noticed but me. Then suddenly she >was hit with these panic attacks of worrying that something would happened to >our family and herself. We have now evolved into physical symptoms that are just >out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned >into rages that last 4-6 hours. After several trips to urgent care, the ER and >her pediatrician we went to a counselor who referred us to a psy. We started >antidepressants but are having a hard time getting her calm enough to actually >get a full nights sleep. She is taking something to help her sleep but one night >it works and then one night it doesn't. I am so at my wits end!! I know I >shouldn't be angry at her and it's the OCD that's doing this but some of the >behaviors seem so minipulative that I can't help but feel like she is putting on >a bit of a show at times. I just sent my husband out to buy the 2 books that >were recommended. That alone was hlpeful but also to know I'm not the only >mother that has become the target for there child's anger. My husband just >returned from Iraq and he seems to be the only one who can calm her down. (by >the way the psy. doen't think his absence or return have anything to do with >this) I know there is a light at the end but I too feel like I have lost my >sweet, happy fun daughter. The psy.said it she continues to have these rages >that we might have to put her in the hospital to get this under control. Have >any of you had to get control of this by putting them in the hospital????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Christy, we too are worried about school. We are moving to a private, Christian school because the public school here is horrible. When I tried to explain to them that my son had extreme anxiety because he had been through his mom's cancer, I was told, " We don't care why he's acting like this. It needs to stop. " Unbelievable. We've moved to a loving environment where there seems to be some understanding. I'm still worried though! Steffanie To: From: graceyscustomwear@... Date: Sun, 15 Aug 2010 18:28:19 -0700 Subject: Re: Re: New member I am so sorry u are going through this (and ur daughter). I have a 9 yr old son that I am worried he might one day have to go to a hospital or something. He just has no understanding that authority is authority. He has been uncontrollable and i am so worried about school. He is so obsessed with money he just last week took 40.00 from a boys wallet at the babysitters. I am sooo embarrsed and ashame. I am worried he will do this at school and they will press charges. I keep telling him that and have even thought about letting the cops talk to him. anyhow., I so wish i could give u some awsome advice to solve it but Im no help. Sorry . But i will say a prayer for ur family. Christy ________________________________ To: Sent: Sun, August 15, 2010 1:35:21 PM Subject: Re: New member Welcome to the group, Anne. I see you've had a lot of replies already, so just wanted to welcome you. Glad you found us. BJ > > My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a >counselor who works with K-5 and I've noticed signed of anxiety since she was a >toddler as well as a few OCD behaviors. None of these behaviors have ever >effected her outside of the home and no one noticed but me. Then suddenly she >was hit with these panic attacks of worrying that something would happened to >our family and herself. We have now evolved into physical symptoms that are just >out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned >into rages that last 4-6 hours. After several trips to urgent care, the ER and >her pediatrician we went to a counselor who referred us to a psy. We started >antidepressants but are having a hard time getting her calm enough to actually >get a full nights sleep. She is taking something to help her sleep but one night >it works and then one night it doesn't. I am so at my wits end!! I know I >shouldn't be angry at her and it's the OCD that's doing this but some of the >behaviors seem so minipulative that I can't help but feel like she is putting on >a bit of a show at times. I just sent my husband out to buy the 2 books that >were recommended. That alone was hlpeful but also to know I'm not the only >mother that has become the target for there child's anger. My husband just >returned from Iraq and he seems to be the only one who can calm her down. (by >the way the psy. doen't think his absence or return have anything to do with >this) I know there is a light at the end but I too feel like I have lost my >sweet, happy fun daughter. The psy.said it she continues to have these rages >that we might have to put her in the hospital to get this under control. Have >any of you had to get control of this by putting them in the hospital????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Welcome Saundra Rose. This is a great group.  There is a place for you to encourage, share your journey and your frustrations without judgements. I too deal with depression and anxiety. I think it leads me to sometimes feel so alone, especially in regards to the issues I have with food and weight. This group is a good place for it.   Livingston ________________________________ To: insideoutweightloss Sent: Tue, June 28, 2011 6:05:00 PM Subject: New member  [mod's note: Welcome, Saundra!] > Hello! My name is Saundra and I live in Sonoma Ca. I'm a massage therapist > and aesthetician at a health spa in the napa valley. I was delighted when I > listened to the IOWL podcast and found this group because I have been > searching for a group of like minded people that understand the challenges I > have faced in my life. I have P.C.O.S (polycystic ovarian syndrome) and > metabolic disorder which has contributed to depression, anxiety, and a ton > of weight gain. I am really happy to have a group I can share, learn, and > grow with ! Thank you, Saundra Rose > __ -- " Democracy is two wolves and a lamb voting on what  to have for lunch.  Liberty is a well-armed lamb contesting the vote. " Quote Link to comment Share on other sites More sharing options...
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