Reply To: Gracie-4 years old

July 26, 2012 at 7:41 pm

I’m very happy to hear she got a correct diagnosis & she is improving.

Are you near one of the GBS/CIDP Centers of Excellence? Or Mayo?

I have a few concerns…

IVIG is the 1st line treatment for CIDP. Usually a person with CIDP is given a 5 day loading dose of IVIG of 2 grams per kg. If your daughter only received 2 days then she did not get the correct dosage. (My daughter was also given only 2 days of IVIG when she was first dx’d. She got worse & ended having to take massive amounts of IVIG to get better)

Also, prednisone is a drug that should ONLY be used (on children especially) when IVIG alone does not work. Her sole source of treatment should NOT be prednisone. That is the old school way of treating CIDP – new research shows IVIG is tolerated by children MUCH better than prednisone.

Research Dr. Dyck from Mayo in Minnesota. His treatment protocol seems to be the most up to date & I agree 100% with it.

I wish we still had private messages so I could send you my phone number. It helps so much to be able to speak with other parents who have gone through this. If you leave me your email address I will get in touch with you.