Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, You and Dylan and family are in my prayers. I understand the " just one more thing " feeling. Even with 's 5 year vacation from surgery it is a " here we go again feeling " . Hopefully it was just a one time event. Lynn Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, You and Dylan and family are in my prayers. I understand the " just one more thing " feeling. Even with 's 5 year vacation from surgery it is a " here we go again feeling " . Hopefully it was just a one time event. Lynn Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, You and Dylan and family are in my prayers. I understand the " just one more thing " feeling. Even with 's 5 year vacation from surgery it is a " here we go again feeling " . Hopefully it was just a one time event. Lynn Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 It wouldn't hurt to check. Often times I think there is something metabolic going on that we have just not discovered. Kim L > hi Kim, > how frustrating and worrying for you. did they think a blood test was > needed? - ds gets twitchy when his calcium is low, but, more like a whole > body at once twitch, doesn't sound quite the same as Dylan, but, thought i'd > throw it out there just in case. as for that dr, sometimes they can be just > too casual! > hope you get an answer soon, > Jo > ds Ben, ds Josh > > ----- Original Message ----- > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 It wouldn't hurt to check. Often times I think there is something metabolic going on that we have just not discovered. Kim L > hi Kim, > how frustrating and worrying for you. did they think a blood test was > needed? - ds gets twitchy when his calcium is low, but, more like a whole > body at once twitch, doesn't sound quite the same as Dylan, but, thought i'd > throw it out there just in case. as for that dr, sometimes they can be just > too casual! > hope you get an answer soon, > Jo > ds Ben, ds Josh > > ----- Original Message ----- > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 It wouldn't hurt to check. Often times I think there is something metabolic going on that we have just not discovered. Kim L > hi Kim, > how frustrating and worrying for you. did they think a blood test was > needed? - ds gets twitchy when his calcium is low, but, more like a whole > body at once twitch, doesn't sound quite the same as Dylan, but, thought i'd > throw it out there just in case. as for that dr, sometimes they can be just > too casual! > hope you get an answer soon, > Jo > ds Ben, ds Josh > > ----- Original Message ----- > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Bonnie, Pam, Thanks for the support. I know yesterday was the first bad day and tics come and go and they can be suppressed for a period of time etc, so it is not the end of the world. I am just sad to see them and am afraid they will be disruptive enough to require meds, and I have been trying hard to avoid meds for a long time. Only time will tell about that, so today I am just sad. The way I've coped with everything is to have a cry and then LEARN (probably more than I should). Yesterday he did have periods of suppressing the tics, but to do it his whole body was vigorously moving, which was in some ways more disruptive than the tics. Once he stopped he was twitching all over. I wish he had the language to understand what was happening and to do cooperative relaxation techniques with me. We do types of massage to help calm him. The only time yesterday his body was calm, was in the swimming pool, where he just kind of floated around instead of his usual busy self. I imagine it must have felt great! The arm tic started again this am as soon as he woke up. I could hear his elbow jerking into the mattress. The doctor said last night that " it could be behavioral " which was what annoyed me the most. That after 5 minutes he could look at Dylan and decide that it could be just behavioral. I have no doubt I know more about what behavior is seen in CHARGE than he will ever dream of knowing. The problem is I know that what starts out as an arm tic, that Dylan could later do on his own, because he has gotten used to the feeling and that does concern me. He is already " autistic-like " and " obsessive-like " , so what do we add " Tourette's like " . I wish I could take him to see Dr. Comings in CA. I would like to know how Dylan's genes match up to the behavioral genes he studies. Sometimes it makes me think that the problem gene in CHARGE must be close to one of these behavioral genes, but that is clearly beyond me to understand. Thanks for listening, again. Off we go to another interesting day. Kim L > Kim, > > I hear you. I understand. Patty was in third grade when she started this > arm movement which would send her pencil across the room. Within a day it > ended > up being her arm, leg, body and a vocal sound. Since I have epilepsy we went > to a pedi neurologist. I thought she was having a seizure but she saw it > happening and said to not worry, it was " just tics. " I felt the same way you > did. > It was horrible to watch it happen to Patty. She was embarrassed and > would hold it in. When she did that though it just intensified the tic. > Finally > she went to a pedi psychologist who diagnosed her with Tourettes. I was > heartbroken for her. That was where the Risperdal was started. We tried a > different med at first but it didn't work. It took about three weeks but the > Risperdal finally worked. We had to play with the dosage. After a few years > though > it no longer worked and the tics came back full force. She was on an > additional med., Quanfacine, and the combination worked. After years of that > it made > her have side effects. We slowly stopped the Quanfacine and low and behold > the > tics subsided being just on the Risperdal. > The psych also diagnosed her with OCD and ADD at the time. He said they > all occur similarly but where they occur within the electrons dictate what it > will be-OCD, Tic.... Puberty also messes it up if her firing is already > different. Along with the medication though it is important to know what > causes > the tics. When Patty is under stress they can come out. That stress can be > both physical and emotional. I had to tell some of the staff in the school > system to get off her back. We even had to change her one on one. This lady > would > tell her to " stop it! " When Patty gets bad we also do some relaxation > techniques. I have her face me and copy my breathing. I do some compressions > and > from there she is then able to continue the rest of relaxation. > Most important Kim though is to get a Dr. who understands Dylan and > CHARGE. I know this is a new diagnosis but it is one that you can research > and > find out how to help him. There is help. There is understanding. It is > difficult, I know. It is difficult to watch. Where is he in puberty too? > Now that > Patty is older they have subsided a great deal. Instead of the tics though > when she is stressed her OCD comes out full force. Six of one, half a dozen > of > the other! > Oh, and we also do muscle massages for her. We start by rubbing the > center of her hand. > I wish you all the best. It is scary but it isn't the end. > > Take care. > Bonnie, mom to a 21, Patty CHARGE 29, and wife to paul > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Bonnie, Pam, Thanks for the support. I know yesterday was the first bad day and tics come and go and they can be suppressed for a period of time etc, so it is not the end of the world. I am just sad to see them and am afraid they will be disruptive enough to require meds, and I have been trying hard to avoid meds for a long time. Only time will tell about that, so today I am just sad. The way I've coped with everything is to have a cry and then LEARN (probably more than I should). Yesterday he did have periods of suppressing the tics, but to do it his whole body was vigorously moving, which was in some ways more disruptive than the tics. Once he stopped he was twitching all over. I wish he had the language to understand what was happening and to do cooperative relaxation techniques with me. We do types of massage to help calm him. The only time yesterday his body was calm, was in the swimming pool, where he just kind of floated around instead of his usual busy self. I imagine it must have felt great! The arm tic started again this am as soon as he woke up. I could hear his elbow jerking into the mattress. The doctor said last night that " it could be behavioral " which was what annoyed me the most. That after 5 minutes he could look at Dylan and decide that it could be just behavioral. I have no doubt I know more about what behavior is seen in CHARGE than he will ever dream of knowing. The problem is I know that what starts out as an arm tic, that Dylan could later do on his own, because he has gotten used to the feeling and that does concern me. He is already " autistic-like " and " obsessive-like " , so what do we add " Tourette's like " . I wish I could take him to see Dr. Comings in CA. I would like to know how Dylan's genes match up to the behavioral genes he studies. Sometimes it makes me think that the problem gene in CHARGE must be close to one of these behavioral genes, but that is clearly beyond me to understand. Thanks for listening, again. Off we go to another interesting day. Kim L > Kim, > > I hear you. I understand. Patty was in third grade when she started this > arm movement which would send her pencil across the room. Within a day it > ended > up being her arm, leg, body and a vocal sound. Since I have epilepsy we went > to a pedi neurologist. I thought she was having a seizure but she saw it > happening and said to not worry, it was " just tics. " I felt the same way you > did. > It was horrible to watch it happen to Patty. She was embarrassed and > would hold it in. When she did that though it just intensified the tic. > Finally > she went to a pedi psychologist who diagnosed her with Tourettes. I was > heartbroken for her. That was where the Risperdal was started. We tried a > different med at first but it didn't work. It took about three weeks but the > Risperdal finally worked. We had to play with the dosage. After a few years > though > it no longer worked and the tics came back full force. She was on an > additional med., Quanfacine, and the combination worked. After years of that > it made > her have side effects. We slowly stopped the Quanfacine and low and behold > the > tics subsided being just on the Risperdal. > The psych also diagnosed her with OCD and ADD at the time. He said they > all occur similarly but where they occur within the electrons dictate what it > will be-OCD, Tic.... Puberty also messes it up if her firing is already > different. Along with the medication though it is important to know what > causes > the tics. When Patty is under stress they can come out. That stress can be > both physical and emotional. I had to tell some of the staff in the school > system to get off her back. We even had to change her one on one. This lady > would > tell her to " stop it! " When Patty gets bad we also do some relaxation > techniques. I have her face me and copy my breathing. I do some compressions > and > from there she is then able to continue the rest of relaxation. > Most important Kim though is to get a Dr. who understands Dylan and > CHARGE. I know this is a new diagnosis but it is one that you can research > and > find out how to help him. There is help. There is understanding. It is > difficult, I know. It is difficult to watch. Where is he in puberty too? > Now that > Patty is older they have subsided a great deal. Instead of the tics though > when she is stressed her OCD comes out full force. Six of one, half a dozen > of > the other! > Oh, and we also do muscle massages for her. We start by rubbing the > center of her hand. > I wish you all the best. It is scary but it isn't the end. > > Take care. > Bonnie, mom to a 21, Patty CHARGE 29, and wife to paul > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Bonnie, Pam, Thanks for the support. I know yesterday was the first bad day and tics come and go and they can be suppressed for a period of time etc, so it is not the end of the world. I am just sad to see them and am afraid they will be disruptive enough to require meds, and I have been trying hard to avoid meds for a long time. Only time will tell about that, so today I am just sad. The way I've coped with everything is to have a cry and then LEARN (probably more than I should). Yesterday he did have periods of suppressing the tics, but to do it his whole body was vigorously moving, which was in some ways more disruptive than the tics. Once he stopped he was twitching all over. I wish he had the language to understand what was happening and to do cooperative relaxation techniques with me. We do types of massage to help calm him. The only time yesterday his body was calm, was in the swimming pool, where he just kind of floated around instead of his usual busy self. I imagine it must have felt great! The arm tic started again this am as soon as he woke up. I could hear his elbow jerking into the mattress. The doctor said last night that " it could be behavioral " which was what annoyed me the most. That after 5 minutes he could look at Dylan and decide that it could be just behavioral. I have no doubt I know more about what behavior is seen in CHARGE than he will ever dream of knowing. The problem is I know that what starts out as an arm tic, that Dylan could later do on his own, because he has gotten used to the feeling and that does concern me. He is already " autistic-like " and " obsessive-like " , so what do we add " Tourette's like " . I wish I could take him to see Dr. Comings in CA. I would like to know how Dylan's genes match up to the behavioral genes he studies. Sometimes it makes me think that the problem gene in CHARGE must be close to one of these behavioral genes, but that is clearly beyond me to understand. Thanks for listening, again. Off we go to another interesting day. Kim L > Kim, > > I hear you. I understand. Patty was in third grade when she started this > arm movement which would send her pencil across the room. Within a day it > ended > up being her arm, leg, body and a vocal sound. Since I have epilepsy we went > to a pedi neurologist. I thought she was having a seizure but she saw it > happening and said to not worry, it was " just tics. " I felt the same way you > did. > It was horrible to watch it happen to Patty. She was embarrassed and > would hold it in. When she did that though it just intensified the tic. > Finally > she went to a pedi psychologist who diagnosed her with Tourettes. I was > heartbroken for her. That was where the Risperdal was started. We tried a > different med at first but it didn't work. It took about three weeks but the > Risperdal finally worked. We had to play with the dosage. After a few years > though > it no longer worked and the tics came back full force. She was on an > additional med., Quanfacine, and the combination worked. After years of that > it made > her have side effects. We slowly stopped the Quanfacine and low and behold > the > tics subsided being just on the Risperdal. > The psych also diagnosed her with OCD and ADD at the time. He said they > all occur similarly but where they occur within the electrons dictate what it > will be-OCD, Tic.... Puberty also messes it up if her firing is already > different. Along with the medication though it is important to know what > causes > the tics. When Patty is under stress they can come out. That stress can be > both physical and emotional. I had to tell some of the staff in the school > system to get off her back. We even had to change her one on one. This lady > would > tell her to " stop it! " When Patty gets bad we also do some relaxation > techniques. I have her face me and copy my breathing. I do some compressions > and > from there she is then able to continue the rest of relaxation. > Most important Kim though is to get a Dr. who understands Dylan and > CHARGE. I know this is a new diagnosis but it is one that you can research > and > find out how to help him. There is help. There is understanding. It is > difficult, I know. It is difficult to watch. Where is he in puberty too? > Now that > Patty is older they have subsided a great deal. Instead of the tics though > when she is stressed her OCD comes out full force. Six of one, half a dozen > of > the other! > Oh, and we also do muscle massages for her. We start by rubbing the > center of her hand. > I wish you all the best. It is scary but it isn't the end. > > Take care. > Bonnie, mom to a 21, Patty CHARGE 29, and wife to paul > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, for now, it might be the " end of world " because your concerns and worries are for Dylan and as his Mom, you want to protect him from anything/everything that can " hurt " him--others thinking he is " weird " with these tics or anything else that makes him different. I wonder if you hve a minute and can get to the Tourette's Syndrome website, if they have an expert close to you for a consult--perhaps the doc from CA has a colleague.... And one more comment.. do you just love how people who know nothing about what you know and live with everyday, can say so glibly, " Behavioral " ?!!! Yes, I understand when you say something could become a behavioral with him (nd others), but to start there must have been sooo frustrating!!!! I am reminding myself right now about deep breaths!! pam > ---------- > From: Kim Lauger > Reply To: CHARGE > Sent: Friday, July 2, 2004 10:40 AM > To: CHARGE > Subject: Re: Sudden onset of tics > > Bonnie, Pam, > > Thanks for the support. > > I know yesterday was the first bad day and tics come and go and they can be > suppressed for a period of time etc, so it is not the end of the world. I > am just sad to see them and am afraid they will be disruptive enough to > require meds, and I have been trying hard to avoid meds for a long time. > Only time will tell about that, so today I am just sad. > > The way I've coped with everything is to have a cry and then LEARN (probably > more than I should). > > Yesterday he did have periods of suppressing the tics, but to do it his > whole body was vigorously moving, which was in some ways more disruptive > than the tics. Once he stopped he was twitching all over. > > I wish he had the language to understand what was happening and to do > cooperative relaxation techniques with me. We do types of massage to help > calm him. The only time yesterday his body was calm, was in the swimming > pool, where he just kind of floated around instead of his usual busy self. > I imagine it must have felt great! > > The arm tic started again this am as soon as he woke up. I could hear his > elbow jerking into the mattress. > > The doctor said last night that " it could be behavioral " which was what > annoyed me the most. That after 5 minutes he could look at Dylan and decide > that it could be just behavioral. I have no doubt I know more about what > behavior is seen in CHARGE than he will ever dream of knowing. The problem > is I know that what starts out as an arm tic, that Dylan could later do on > his own, because he has gotten used to the feeling and that does concern me. > > He is already " autistic-like " and " obsessive-like " , so what do we add > " Tourette's like " . I wish I could take him to see Dr. Comings in CA. I > would like to know how Dylan's genes match up to the behavioral genes he > studies. Sometimes it makes me think that the problem gene in CHARGE must > be close to one of these behavioral genes, but that is clearly beyond me to > understand. > > Thanks for listening, again. Off we go to another interesting day. > > Kim L > > > > > > > Kim, > > > > I hear you. I understand. Patty was in third grade when she started this > > arm movement which would send her pencil across the room. Within a day it > > ended > > up being her arm, leg, body and a vocal sound. Since I have epilepsy we went > > to a pedi neurologist. I thought she was having a seizure but she saw it > > happening and said to not worry, it was " just tics. " I felt the same way you > > did. > > It was horrible to watch it happen to Patty. She was embarrassed and > > would hold it in. When she did that though it just intensified the tic. > > Finally > > she went to a pedi psychologist who diagnosed her with Tourettes. I was > > heartbroken for her. That was where the Risperdal was started. We tried a> > > different med at first but it didn't work. It took about three weeks but the > > Risperdal finally worked. We had to play with the dosage. After a few years > > though > > it no longer worked and the tics came back full force. She was on an > > additional med., Quanfacine, and the combination worked. After years of that > > it made > > her have side effects. We slowly stopped the Quanfacine and low and behold > > the > > tics subsided being just on the Risperdal. > > The psych also diagnosed her with OCD and ADD at the time. He said they > > all occur similarly but where they occur within the electrons dictate what it > > will be-OCD, Tic.... Puberty also messes it up if her firing is already > > different. Along with the medication though it is important to know what > > causes > > the tics. When Patty is under stress they can come out. That stress can be > > both physical and emotional. I had to tell some of the staff in the school > > system to get off her back. We even had to change her one on one. This lady > > would > > tell her to " stop it! " When Patty gets bad we also do some relaxation > > techniques. I have her face me and copy my breathing. I do some compressions > > and > > from there she is then able to continue the rest of relaxation. > > Most important Kim though is to get a Dr. who understands Dylan and > > CHARGE. I know this is a new diagnosis but it is one that you can research > > and > > find out how to help him. There is help. There is understanding. It is > > difficult, I know. It is difficult to watch. Where is he in puberty too? > > Now that > > Patty is older they have subsided a great deal. Instead of the tics though > > when she is stressed her OCD comes out full force. Six of one, half a dozen > > of > > the other! > > Oh, and we also do muscle massages for her. We start by rubbing the > > center of her hand. > > I wish you all the best. It is scary but it isn't the end. > > > > Take care. > > Bonnie, mom to a 21, Patty CHARGE 29, and wife to paul > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 , Thanks. Kim > Kim, I hope you get the answers you need, wish I could be of help--guess > I'll just " listen " and give encouragement. > > > Sudden onset of tics > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > I really didn¹t want to believe that, so just kept watching. > Today his Intervener called to say he started to have this rhythmic movement > of his arm > I went to get him and found it was one arm jerking, the other hand was > constantly tapping his middle finger to his thumb, his head was jerking, > even his lips, and fingers if the rest of him was still. Holding him I can > feel his body twitching against me. > Because so many muscles are involved, his doc had us go to the ER. Nothing > helpful there. > ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² > Personally I would like to have slapped the doctor and perhaps hurt him. > Maybe they won¹t hurt him, but they certainly were preventing him from being > able to use his body to do what it needed to do,l ike fasten a diaper tape, > rinse out his bolus tube, use a marker etc. > > We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm > Dylan¹s nervous system down. There has to be some reason why they came on > today and so extreme. > > In the meantime I feel like I felt ages ago when we had all the other new > diagnosis. It can¹t be one more thing. Already the CHARGE things that > interfere with his life are all neurological. It makes me sad to think of > it progressing to this and makes me feel powerless at doing anything to be > able to help him modulate his nervous system. Knowing me I Oll have my cry, > then we¹ll figure out what to do. > > Maybe Dr. s will fix him up tomorrow and they will never come back. > We¹ve experienced miracles before, maybe there will be another. > > Thanks for listening. > > Kim L > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 , Thanks. Kim > Kim, I hope you get the answers you need, wish I could be of help--guess > I'll just " listen " and give encouragement. > > > Sudden onset of tics > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > I really didn¹t want to believe that, so just kept watching. > Today his Intervener called to say he started to have this rhythmic movement > of his arm > I went to get him and found it was one arm jerking, the other hand was > constantly tapping his middle finger to his thumb, his head was jerking, > even his lips, and fingers if the rest of him was still. Holding him I can > feel his body twitching against me. > Because so many muscles are involved, his doc had us go to the ER. Nothing > helpful there. > ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² > Personally I would like to have slapped the doctor and perhaps hurt him. > Maybe they won¹t hurt him, but they certainly were preventing him from being > able to use his body to do what it needed to do,l ike fasten a diaper tape, > rinse out his bolus tube, use a marker etc. > > We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm > Dylan¹s nervous system down. There has to be some reason why they came on > today and so extreme. > > In the meantime I feel like I felt ages ago when we had all the other new > diagnosis. It can¹t be one more thing. Already the CHARGE things that > interfere with his life are all neurological. It makes me sad to think of > it progressing to this and makes me feel powerless at doing anything to be > able to help him modulate his nervous system. Knowing me I Oll have my cry, > then we¹ll figure out what to do. > > Maybe Dr. s will fix him up tomorrow and they will never come back. > We¹ve experienced miracles before, maybe there will be another. > > Thanks for listening. > > Kim L > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 , Thanks. Kim > Kim, I hope you get the answers you need, wish I could be of help--guess > I'll just " listen " and give encouragement. > > > Sudden onset of tics > > > Dylan started with some movements of his head over the weekend that seemed > like tics. > I really didn¹t want to believe that, so just kept watching. > Today his Intervener called to say he started to have this rhythmic movement > of his arm > I went to get him and found it was one arm jerking, the other hand was > constantly tapping his middle finger to his thumb, his head was jerking, > even his lips, and fingers if the rest of him was still. Holding him I can > feel his body twitching against me. > Because so many muscles are involved, his doc had us go to the ER. Nothing > helpful there. > ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² > Personally I would like to have slapped the doctor and perhaps hurt him. > Maybe they won¹t hurt him, but they certainly were preventing him from being > able to use his body to do what it needed to do,l ike fasten a diaper tape, > rinse out his bolus tube, use a marker etc. > > We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm > Dylan¹s nervous system down. There has to be some reason why they came on > today and so extreme. > > In the meantime I feel like I felt ages ago when we had all the other new > diagnosis. It can¹t be one more thing. Already the CHARGE things that > interfere with his life are all neurological. It makes me sad to think of > it progressing to this and makes me feel powerless at doing anything to be > able to help him modulate his nervous system. Knowing me I Oll have my cry, > then we¹ll figure out what to do. > > Maybe Dr. s will fix him up tomorrow and they will never come back. > We¹ve experienced miracles before, maybe there will be another. > > Thanks for listening. > > Kim L > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, I hope you get the answers you need, wish I could be of help--guess I'll just " listen " and give encouragement. Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, I hope you get the answers you need, wish I could be of help--guess I'll just " listen " and give encouragement. Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, I hope you get the answers you need, wish I could be of help--guess I'll just " listen " and give encouragement. Sudden onset of tics Dylan started with some movements of his head over the weekend that seemed like tics. I really didn¹t want to believe that, so just kept watching. Today his Intervener called to say he started to have this rhythmic movement of his arm I went to get him and found it was one arm jerking, the other hand was constantly tapping his middle finger to his thumb, his head was jerking, even his lips, and fingers if the rest of him was still. Holding him I can feel his body twitching against me. Because so many muscles are involved, his doc had us go to the ER. Nothing helpful there. ³Looks like tics, don¹t know why they started today, they won¹t hurt him.² Personally I would like to have slapped the doctor and perhaps hurt him. Maybe they won¹t hurt him, but they certainly were preventing him from being able to use his body to do what it needed to do,l ike fasten a diaper tape, rinse out his bolus tube, use a marker etc. We will see Dylan¹s DO for cranial sacral tomorrow and hopefully he can calm Dylan¹s nervous system down. There has to be some reason why they came on today and so extreme. In the meantime I feel like I felt ages ago when we had all the other new diagnosis. It can¹t be one more thing. Already the CHARGE things that interfere with his life are all neurological. It makes me sad to think of it progressing to this and makes me feel powerless at doing anything to be able to help him modulate his nervous system. Knowing me I Oll have my cry, then we¹ll figure out what to do. Maybe Dr. s will fix him up tomorrow and they will never come back. We¹ve experienced miracles before, maybe there will be another. Thanks for listening. Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Kim- I'm sharing in your sadness and frustration. That powerless feeling is like a defeated feeling for me sometimes. Like I'm just never gonna be able to win against this CHARGE thing -- it'll just keep finding another weapon to use against us. You are so knowledgable about Dylan's neurological system and how things seem to work (or not) for him. To be right on the brink of understanding and to keep finding the answer just out of your reach... that's the ultimate in frustration. I hope the DO is able to do some good with the CST. It would be amazing, but it is possible. Like you said, we've seen miracles before. Modern medicine can't always explain it, but alternative methods sometimes can do things that are not easily explained. Sometimes I'm not as interested in the hows of things as much as the pragmatics - does it work or not. You will find a way to make this as good as you can for Dylan. I'm sure you will. I can't put myself in your place holding him and feeling the body twitches out of your and his control. What a helpless feeling. Have your cry, do your research, and get on with things. You'll both be " fine " -- whatever that means in CHARGEland. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Kim- I'm sharing in your sadness and frustration. That powerless feeling is like a defeated feeling for me sometimes. Like I'm just never gonna be able to win against this CHARGE thing -- it'll just keep finding another weapon to use against us. You are so knowledgable about Dylan's neurological system and how things seem to work (or not) for him. To be right on the brink of understanding and to keep finding the answer just out of your reach... that's the ultimate in frustration. I hope the DO is able to do some good with the CST. It would be amazing, but it is possible. Like you said, we've seen miracles before. Modern medicine can't always explain it, but alternative methods sometimes can do things that are not easily explained. Sometimes I'm not as interested in the hows of things as much as the pragmatics - does it work or not. You will find a way to make this as good as you can for Dylan. I'm sure you will. I can't put myself in your place holding him and feeling the body twitches out of your and his control. What a helpless feeling. Have your cry, do your research, and get on with things. You'll both be " fine " -- whatever that means in CHARGEland. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Kim- I'm sharing in your sadness and frustration. That powerless feeling is like a defeated feeling for me sometimes. Like I'm just never gonna be able to win against this CHARGE thing -- it'll just keep finding another weapon to use against us. You are so knowledgable about Dylan's neurological system and how things seem to work (or not) for him. To be right on the brink of understanding and to keep finding the answer just out of your reach... that's the ultimate in frustration. I hope the DO is able to do some good with the CST. It would be amazing, but it is possible. Like you said, we've seen miracles before. Modern medicine can't always explain it, but alternative methods sometimes can do things that are not easily explained. Sometimes I'm not as interested in the hows of things as much as the pragmatics - does it work or not. You will find a way to make this as good as you can for Dylan. I'm sure you will. I can't put myself in your place holding him and feeling the body twitches out of your and his control. What a helpless feeling. Have your cry, do your research, and get on with things. You'll both be " fine " -- whatever that means in CHARGEland. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Sorry to hear about this. Hope the neurologist gets a handle on it. Remember the research on PANUPS and STREP reaching the Basil Ganglia causing sudden onset tics..? Perhaps this is something to talk to the doctor about. Also experiences with changes in balance issues=deep infection within inner ear structures. Ann Gloyn Spealist Teacher Canada > > > Kim, I hope you get the answers you need, wish I could be of help--guess > > I'll just " listen " and give encouragement. > > > > > > Sudden onset of tics > > > > > > Dylan started with some movements of his head over the weekend that seemed > > like tics. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Thanks Ann, I did have the ER doctor check Dylan's ears which were clear (at least the middle ear) and to do a strept test, because he has been exposed to strept at school. The rapid strept test was negative. When we spoke to the neurologist the next day he included a strept test with the labs, so he is at least thinking of that. I guess that is what made me feel better. At least he was checking for underlying causes instead of just saying " tics are common in kids with developmental disabilities " . Well maybe they are, but they are no less disruptive than in the " typical " population. Dylan's body is calmer today, I am sure because of his manipulation yesterday, but he is still ticing. Kim > Sorry to hear about this. Hope the neurologist gets a handle on it. > Remember the research on PANUPS and STREP reaching the Basil Ganglia > causing sudden onset tics..? Perhaps this is something to talk to > the doctor about. Also experiences with changes in balance issues=deep > infection within inner ear structures. > Ann Gloyn > Spealist Teacher > Canada > > >> >>> Kim, I hope you get the answers you need, wish I could be of > help--guess >>> I'll just " listen " and give encouragement. >>> >>> >>> Sudden onset of tics >>> >>> >>> Dylan started with some movements of his head over the weekend > that seemed >>> like tics. >>> > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Another thing came to mind as well. I recall a few CHARGE parent reports of the finding of ACETYL-L-CARTINE (ALC) deficiency,and wondered about the effects of this. It would help in the conversion of choline into acetylcholine, a key neurotransmitter in the body. ALC also increases the release of sufficient levels of acetylcholine necessary for transmission of messages in the brain from one nerve cell to another. Ann Gloyn Canada > Quote Link to comment Share on other sites More sharing options...
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