Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi, They have never taken reglan. We were told not to give benedryl again unless absolutely necessary because we gave a low dose for a bee-sting and Cole could not walk for 12 hours (or sit up) after taking it. Zack's 3 day episode was pretty continuous in the left leg and the hands--he ended up with a charley horse in his calf from it that lasted a week. I have noted a correlation with Carnitor increases and an increase of dystonia--no one listens to me on that one though. Lots of questions for the neuro when we see her. Kris > > Thanks for your feedback. Maybe they do have a neurotransmitter > > disorder. The other things they say point to it are hyperactivity, > > don't sleep, and completely insane when in crisis. > > > > The boys have had these episodes since they day they got sick (over > a > > year ago). They have called them dystonia and oculargyric crisis > but > > have never given us a med to help control them. The neuro did talk > > about putting them on parkinson drugs if they get a positive > > diagnosis. I am frustrated because it seems like we get a > different > > diagnosis every 3 months. > > > > The boys have had occasional nystagmus like . I feel really > > bad after reading Heidi's post because Zack actually had an episode > > that lasted 3 days. Nobody ever knows what to do so it did not > even > > dawn on me to take him to the hospital. > > > > Thanks again, > > > > Kris > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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