Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment
Stephanie – I’m so sorry to hear Madeleine had to go through all of that. I know it is so very hard to watch your child go through all of that. I had to fight tooth & nail to get Emily’s IVIG treatments. I kept a calendar with all of her IVIG’s & all of her relapses. It took a few months, but when I took it to her neuro & he saw on paper what I had been telling him, there was no way he could deny that she needed IVIG more often. Are you keeping a log of her treatments & relapses? I highly recommend keeping a medical binder with all of her test results, IVIG info, etc in it.
I personally believe there is a variant of CIDP that does not respond well to steroids. I think I remember reading about it – it was so long ago though. Maybe you can use Google & find some articles. That is what I did when Emily got 1st got sick.
Emily is doing well so far. It has only been a few weeks since her last treatment. The longest she has gone without IVIG is 8 weeks – so at 8 weeks since her last treatment I know I will be a nervous wreck looking for any sign or symptom.
Have you researched other CIDP specialists? There is a dr out of Mayo in Minnesota that I really like. His name is Dr. Dyck. Emily has never seen him but I have done some research on him & I know of 2 other kids with CIDP who have seen him. As far as I know, both parents were pleased.