Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Hi everyone! It has been a while since I have written. I am in urgent need of your opinions. When Charlie was 6 months he started having infantil spasms 3 or 4 times a day. We treated he with oral prednison and it worked. He is now 2 and a half. He started with them again about six months ago. This time he only has them when he wakes up, which is usually only twice a day. I would not have been so concerned about just two spasams a day, but his development had almost come to a complete stop. We tryed the prednison(spelled wrong) again and it did not work. We then took him off the phenobarb and put him on kolazipan. That did not work either. We then decided it was time to try ACTH. From what the nero said, it was almost sure to work. We are almost three weeks into the course of the shots. He is still having the spasams. The nero has her opinion but at this point I almost wonder if anything will work, and if it is worth druging him up. I was hoping maybe some of you would have an opinion. Maybe some of you have gone through this. Please help! Thank You, Catey,Mom to Charlie two and a half (bilateral perisilvian pariooccipital polymicrogyria)he can sit leaning on one hand, he gets up on his hands and knees, but can't seem to work those hands, he still eats baby food we are working on textures. Quote Link to comment Share on other sites More sharing options...
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