Reply To: 12 year old son with atypical GBS/CIDP
Hi, we had similar symptoms and our first dx was gbs and then several months later cidp after a relapse. I was wondering if you could explain the “two ivig doses” Do you mean 2 days of treatments or 2 loading doses which consist of (typically) 4-5 days in a row of ivig, wait 4-6 weeks and then you did it again? If it was just 2 days and that is all, that could explain why you did not see a difference, that would not have been a full loading dose. Regarding the pp, many times when people are not responding to ivig (if you did the 4-5 days for 2 months consecutively with no difference, it would be fair to say there was little to no response to ivig) they will do pp and immediately follow up with ivig and then go for 2-6 weeks with no other treatment. Unfortunately the variance in how people respond to treatment and the frequency of relapse varies greatly. No to people are really the same. It just takes a while to figure out the plan that works best for you.
We DID see an immediate difference after our 5 day load. On the 4Th day of the 5 day load he was able to run down the hospital halls and do push ups and a day early he could not walk, use the bath room, difficulty breathing, could not even lift the remote. It has been six years and we are going to try to wean again after summer. There is hope, things do get better. We could talk if you like. Be persistent and don’t give up. We too were thrown into the “psychological” category as well as the muscular dystrophy (CMT) category finally I said what about GBS? After the third doc we finally received the care we needed. Leave an email if you like and maybe we could talk