Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 Britta, I am sorry to hear that your daughter is having so many problems. It must be really hard on her as a young woman. I'm not sure how much help I can be. My 4 1/2 yr old daughter has severe ataxia on top of severe low tone. She is immobile and has very little control over her limbs. It has always been this way for her, but since she had a gtube placed, she has continued to make slow improvement. She had to be put on Phenobarbitol for seizures almost 2 years ago and had a really hard time on it at first. I looked up phenobarb on the web and found ataxia is one of the side effects, among a host of others. I am not sure to what extent this drug may be impeding her developement, but it does control her seizures. Chelsea is also much weaker on her left side, which was where the EEG showed she was having more activity. In early 2000, she spent a lot of time in the hospital and quit using her left arm completely. I am not sure if it was because she was sedentary for so long or from seizure activity while she was very ill. With therapy she is now starting to use it again a bit. I hope you find some answers. It is very hard to watch your child struggle and not be able to do a thing about it. Hang in there=) e, Chelsea's mom (non-specific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 >Britta: you may want to contact an OT and find out what eating utensils are out there for your daughter. They may plates a special way with edges so you can scoop food up easier. My daughter has ataxia, too. But she is 3; so I tend to feed her and I give her alot of finger food to eat. But with your daughter being 19; she may feel like she is a child with you feeding her. They have spoons with straps to attach to the hand and things like that. Also check with a physical therapist regarding the ataxia. She may need a wheelchair. Not sure about that. But they will guide you in the best way possible about those issues. Good luck and let us know what you find out. mom to Leah Hi to you all > > I am looking for any help. > My daughter Lene, 19 years old, was diagnosed with Complex III deficiency > last year. Her condition has rapidly got worse in the last weeks. She has > developped problems with controling her movements. She can`t any longer eat > with a knife and fork or hold a glass, and in the morning she nearly can`t > stand or walk, during the day it`s a little bit better. These problems are > very painfull for her. The doctor calls it ataxia and says there is no > treament for it. > Can anyone give me some advice about this problem? > > Thanks > Britta > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Britta, My son Lucas has had ataxia. At the age of 4 he started walking as he was put on Dilantin. He was sick and ended up J-tube fed. The absorbancy of Dilantin decreases up to 70% with tube feedings. He now has begun to walk on his own without significant ataxia once increasing and getting his Dilantin in the low therapeutic range. He does not have seizures that we know of but instead a slower than normal brain frequency. Just a thought. Loriann Quote Link to comment Share on other sites More sharing options...
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