Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Deb, Sorry to hear you aren't having luck controlling the movements. I can share with you the journey we have taken through the seizure meds to try and control and Lindsey's myoclonics and myoclonus. Keppra - Initially stopped the myoclonics but, only saw them return (presenting differently though) a few months later. Felbatol - Lindsey was on this from Oct. 2003-Jan 2004. Unfortunately, we didn't see any difference with this med. Except temper tantrums and sleep difficulty. Klonipin - Just started this med about 3 weeks ago. We are seeing a decrease in the number of jerks but, are still seeing more than we would like. One of the side effects of this med is decreased muscle tone so, we won't take them up to a very high dose since they already have tone issues. (Sounds like this would be an issue for you too.) The girls are also on Zonegran but, they were put on that to stop their generalized seizures and it hasn't helped their myoclonus. Our next option, according to our neuro, is a version of the keto diet. He said they have seen some kids respond to the Atkin's diet which follows the same principles of the keto diet but, isn't near as strict. What I have found through our journey is it's just a guessing game and trying different meds until you find the magic pill that works. I pray that you will soon find the magic pill for Zak. Kim - Mom to and Lindsey (2) Involuntary Movements Another question for everybody...my son was at the neurologist yesterday and she is still looking for a medicine to help control his involuntary movements. In the past she tried Topomax and unfortunately he had an allergic reaction to it. She mentioned a valium based med but his dad and I don't want to try it because of the side effects...she said that his tone could get worse and he also could have some swallowing issues. Right now Zak is able to eat by mouth, everything needs to be pureed but he still can eat by mouth. His head control has improved also over the past months and I just don't want to go backwards. Does anybody know of a med that could help with the movements? We may try the Topomax again, possibly in a liquid this time to see if he can tolerate that. Deb, mom to Zak Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Deb, What exactly do you mean by "involuntary movements'? was having jerking spells,some stiffness and what appeared to be spasms.Her doc put her on Baclofen.It did seem to help some but then she started having some side effects so we changed to Dantrium.The Dantrium has been wonderful,so far the jerking,stiffness and spasms are all gone.She did have some reflux like problems when we first started the Dantrium,but these have for the most part resolved on thier own. We did go ahead with Zantax just to give a little more help with the reflux. ,Mom to Involuntary Movements Another question for everybody...my son was at the neurologist yesterday and she is still looking for a medicine to help control his involuntary movements. In the past she tried Topomax and unfortunately he had an allergic reaction to it. She mentioned a valium based med but his dad and I don't want to try it because of the side effects...she said that his tone could get worse and he also could have some swallowing issues. Right now Zak is able to eat by mouth, everything needs to be pureed but he still can eat by mouth. His head control has improved also over the past months and I just don't want to go backwards. Does anybody know of a med that could help with the movements? We may try the Topomax again, possibly in a liquid this time to see if he can tolerate that. Deb, mom to Zak Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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