Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment
Raiyaan is 9 and we got diagnosed about the same time as your daughter did. Maybe we can help each other out. Dawn has been so helpful. I have the exact same concerns/questions/fears as you. When I open my eyes in the morning, after a prayer, this is the first thing on mind and the last thing before I go to sleep. It is emotionally draining. But more so for our kids. We have been to Baltimore too for a second opinion. We are in central nj and getting treated at a hospital here. But we have been to all the big doctors in area for opinions. My son has also responsed well to IVIG, but very slowly. We started seeing changes a month after his first 5 day infusion. Any improvement comes right after about 2 to 3 weeks of dosage and he has had 3 5 day so far. Scheduled for one next week. I just pray that this goes away for all our kids.