Remission symptom free over 1 year

February 3, 2010 at 10:39 am

It has been a while since i posted and I apologize for that. My son had just turned 5 when was diagnosed. He was almost 10 when his doctor said he does no longer need his treatments. He is now 11 yrs. I think the trick for him was the amount and schedule of his IVIG. We went to Johns Hopkins for his doctor. He was 8 hours away and our insurance for going out of state was almost nonexistent. At the time we had good credit and were able to take out loans, so we were able to do this for him. Over the years we have incurred monotonous debt, but the outcome was worth any amount to me. We ended up at JH because we were going to Children’s Hospital in Pittsburgh for 1 year and a team walked in one day and told us they did not know what else to do for him. He was at the time on 2 week intervals for IVIG. I found the doctor at JH and made the appointment myself. We owe him so much. I just wish more doctors were more aware of CIDP.

He has not had any ivigs or any related medications for about 1 1/2 years. He runs, walks and is on a basketball team. Issues he has been left with: he does not run very fast, he has problems opening tops of bottles/cans, he has difficulty tying his shoes, his shoes wear out because it seems as though he is heavy footed.

Joey’s Mom