Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 << Those of you that have gone that route, did your angel stay on the antiseizure medicine too? >> Hi, was on vigabatrin the whole time. Joanne, New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Dear Regina: My son was on Vigabatrin and Depakote while having the ACTH treatment. I think is the normal procedure. It''s hard but it's worth it. Your little one is in our prayers. Warmly regard, Claudio dad to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 In a message dated 09/13/2000 10:24:35 AM Pacific Daylight Time, basketst@... writes: << Those of you that have gone that route, did your angel stay on the antiseizure medicine too? >> Hi Regina, My son Damian was on ACTH when he was about 10 months old. Since the meds. he tried before were not helping he was on ACTH alone. After a couple of days on it he was becoming very irritable and cried almost all day. (I don't want to scare you) Well he got hospitalized after 5 days on it because he ended up getting dyskenisia. It took a month for it to clearly go away. But my question is the hospital going to give the shot or are you?? Me and my husband had to give it to him and we went to the hospital also for the first couple of days. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Sharon, and I will be at the hospital for supposedly 5 days during which time they'll teach my husband and I how to administer the shot and how to monitor her urine and bowel. What is dyskenisia? Thanks Regina Re: and ACHT > > In a message dated 09/13/2000 10:24:35 AM Pacific Daylight Time, > basketst@... writes: > > << Those of you that have gone that route, did your angel stay on the > antiseizure medicine too? >> > Hi Regina, > My son Damian was on ACTH when he was about 10 months old. Since the meds. > he tried before were not helping he was on ACTH alone. After a couple of > days on it he was becoming very irritable and cried almost all day. (I don't > want to scare you) Well he got hospitalized after 5 days on it because he > ended up getting dyskenisia. It took a month for it to clearly go away. But > my question is the hospital going to give the shot or are you?? Me and my > husband had to give it to him and we went to the hospital also for the first > couple of days. > Sharon > > > > _______________________________________________ Why pay for something you could get for free? NetZero provides FREE Internet Access and Email http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 In a message dated 09/14/2000 12:58:24 PM Pacific Daylight Time, basketst@... writes: << What is dyskenisia? >> Dyskenisia is an uncontrollable muscle movement. Damian couldn't keep his head still at all. So it was really hard to feed him after the hospitalization and he had a ng tube. After that It would take about half an hour just to feed him 2 oz. of milk. It was really hard. I think it's more of an allergic reaction. Sharon Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.