Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Hi All I'm looking for other family's experience with dystonia. started klonopin in Jan and her dystonia completely disappeared in 24 hours. Kind of made me feel like I was crazy, did she really have it if it completely disappeared so quickly? Well, yesterday it came back, full force, as if she hadn't taken the medicine. It was as if someone flipped a switch and she couldn't move. I called the pedi and he increased her dose and I gave her an extra dose, and so far so good today. Has anyone else had this experience? I've also been reading the dysautonomia posts with interest. has pretty severe symptoms as well as a few weird ones that are leading the neurologists towards Riley-Day syndrome. She doesn't have overflow tears and she doesn't have taste buds on the tip of her tongue. She doesn't have very good pain sensation for her skin (doesn't feel it when I check her blood sugar or pull tape off her skin, didn't notice when she had muscle biopsy done). Is anyone else's child still on an apnea monitor? When was it discontinued? Sometimes I wonder if her seizures could be due to the bradycardia and low BP. Does anyone medicate for low BP? Any herbal supplements that help? Thanks a bunch! Heidi, 's Mom 18 mos, dysautonomia, dystonia, seizures, RTA, ?mito, ?GA1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 The only thing I have been told to do for the low BP (mine) is increase salt and fluid intake. A bolus of fluid can help immediately. I cannot help with the rest. Sorry. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 The only thing I have been told to do for the low BP (mine) is increase salt and fluid intake. A bolus of fluid can help immediately. I cannot help with the rest. Sorry. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 The only thing I have been told to do for the low BP (mine) is increase salt and fluid intake. A bolus of fluid can help immediately. I cannot help with the rest. Sorry. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 HI, My four year old son has dystonia with has been getting progessively worse especially after illness. We use a drug called Nitoman (tetrabanazine) which has helped a great deal. It does make him sleepy so we give it at bedtime. He has a good night sleep ( he won't sleep without medication) and it seem to help control the dystonia. He is also on clonazepam three times a day which my neurologist says will help the dystonia and we recently had to add a new drug apotrihex (sorry I can't remember the generic name) twice a day. Right now he seems to be stable, but his dystonia gets worse after each major cold , resp infections etc. Good luck in finding your solution, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Asenath, too, has had temporary episodes of distonia. For a three week period in 2002 she had intense pain and tightness in her lower legs and feet. We had to stop our veihcle several times just to take her braces off and rub them to help the cramping. Then as suddenly as it began, it stopped. We had another episode similiar to that as well. Thankfully we haven't had any continual problems with it. We saw a specialist for it and she was worried about dystonia but as it was temporary, we didn't use meds It would be nice if your childs' was temporary as well. Asenath's was a result of a stroke episode. This is something I have worried about in Zipporrah as she has tight muscles from her stroke episode, but she is getting better weekly. Darla: mommy to Asenath, Zipporrah, and gang dystonia Hi All I'm looking for other family's experience with dystonia. started klonopin in Jan and her dystonia completely disappeared in 24 hours. Kind of made me feel like I was crazy, did she really have it if it completely disappeared so quickly? Well, yesterday it came back, full force, as if she hadn't taken the medicine. It was as if someone flipped a switch and she couldn't move. I called the pedi and he increased her dose and I gave her an extra dose, and so far so good today Has anyone else had this experience? I've also been reading the dysautonomia posts with interest. has pretty severe symptoms as well as a few weird ones that are leading the neurologists towards Riley-Day syndrome. She doesn't have overflow tears and she doesn't have taste buds on the tip of her tongue. She doesn't have very good pain sensation for her skin (doesn't feel it when I check her blood sugar or pull tape off her skin, didn't notice when she had muscle biopsy done). Is anyone else's child still on an apnea monitor? When was it discontinued? Sometimes I wonder if her seizures could be due to the bradycardia and low BP. Does anyone medicate for low BP? Any herbal supplements that help? Thanks a bunch! Heidi, 's Mom 18 mos, dysautonomia, dystonia, seizures, RTA, ?mito, ?GA1Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Asenath, too, has had temporary episodes of distonia. For a three week period in 2002 she had intense pain and tightness in her lower legs and feet. We had to stop our veihcle several times just to take her braces off and rub them to help the cramping. Then as suddenly as it began, it stopped. We had another episode similiar to that as well. Thankfully we haven't had any continual problems with it. We saw a specialist for it and she was worried about dystonia but as it was temporary, we didn't use meds It would be nice if your childs' was temporary as well. Asenath's was a result of a stroke episode. This is something I have worried about in Zipporrah as she has tight muscles from her stroke episode, but she is getting better weekly. Darla: mommy to Asenath, Zipporrah, and gang dystonia Hi All I'm looking for other family's experience with dystonia. started klonopin in Jan and her dystonia completely disappeared in 24 hours. Kind of made me feel like I was crazy, did she really have it if it completely disappeared so quickly? Well, yesterday it came back, full force, as if she hadn't taken the medicine. It was as if someone flipped a switch and she couldn't move. I called the pedi and he increased her dose and I gave her an extra dose, and so far so good today Has anyone else had this experience? I've also been reading the dysautonomia posts with interest. has pretty severe symptoms as well as a few weird ones that are leading the neurologists towards Riley-Day syndrome. She doesn't have overflow tears and she doesn't have taste buds on the tip of her tongue. She doesn't have very good pain sensation for her skin (doesn't feel it when I check her blood sugar or pull tape off her skin, didn't notice when she had muscle biopsy done). Is anyone else's child still on an apnea monitor? When was it discontinued? Sometimes I wonder if her seizures could be due to the bradycardia and low BP. Does anyone medicate for low BP? Any herbal supplements that help? Thanks a bunch! Heidi, 's Mom 18 mos, dysautonomia, dystonia, seizures, RTA, ?mito, ?GA1Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Asenath, too, has had temporary episodes of distonia. For a three week period in 2002 she had intense pain and tightness in her lower legs and feet. We had to stop our veihcle several times just to take her braces off and rub them to help the cramping. Then as suddenly as it began, it stopped. We had another episode similiar to that as well. Thankfully we haven't had any continual problems with it. We saw a specialist for it and she was worried about dystonia but as it was temporary, we didn't use meds It would be nice if your childs' was temporary as well. Asenath's was a result of a stroke episode. This is something I have worried about in Zipporrah as she has tight muscles from her stroke episode, but she is getting better weekly. Darla: mommy to Asenath, Zipporrah, and gang dystonia Hi All I'm looking for other family's experience with dystonia. started klonopin in Jan and her dystonia completely disappeared in 24 hours. Kind of made me feel like I was crazy, did she really have it if it completely disappeared so quickly? Well, yesterday it came back, full force, as if she hadn't taken the medicine. It was as if someone flipped a switch and she couldn't move. I called the pedi and he increased her dose and I gave her an extra dose, and so far so good today Has anyone else had this experience? I've also been reading the dysautonomia posts with interest. has pretty severe symptoms as well as a few weird ones that are leading the neurologists towards Riley-Day syndrome. She doesn't have overflow tears and she doesn't have taste buds on the tip of her tongue. She doesn't have very good pain sensation for her skin (doesn't feel it when I check her blood sugar or pull tape off her skin, didn't notice when she had muscle biopsy done). Is anyone else's child still on an apnea monitor? When was it discontinued? Sometimes I wonder if her seizures could be due to the bradycardia and low BP. Does anyone medicate for low BP? Any herbal supplements that help? Thanks a bunch! Heidi, 's Mom 18 mos, dysautonomia, dystonia, seizures, RTA, ?mito, ?GA1Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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