Reply To: 4 year old with CIDP – New to Forum seeking support

My son became ill 5/1/11 they diagnosed him with GBS. (we were out of town on vacation and ended up after 2 weeks in icu being air ambulanced back to our home state of Texas) After 8 weeks in hospital, being on feeding tubes, ventalator and completly unable to move he finally got well enough to go home. Since then he has relapsed every 3 months. They now say after different tests and watching him go up and down that he has cidp. He get 5 days of ivig every 3 months (or so far that has been the trend). What I dont like is that after the IVig treatment he has no pain and doesn’t have to take a ton of medicaition and is a normal 4 year old and then the dr waits to give it to him again until he is having to taking tons of pain medication to function again and is tripping all over and so weak. Sleeping 12 to 14 hours at night and taking 3 and 4 hour naps, which isn’t normal for him. I am not sure if I should fight harder, go to a different doctor to get it more often or just do what they think is right for my son. This last time in the hospital the finally put a mediport which is supposed to make it easier but so far he fights it. I am so frustrated with the whole thing. Finally glad to find others going thru similar situation.