Reply To: Gracie-4 years old

May 16, 2012 at 4:01 pm

My son was was 10 when he was dx with gbs. After 6 months the dx was changed to cidp. Gbs/cidp is a very tricky dx. Each person is different regarding recovery and response to ivig or other protocols. For instance, we had an immediate response to ivig. After the four day loading dose we went from not being able to walk, breathe, urinate, picu ward to running down the halls. He could not even hold a pencil or feed himself, let alone walk. It started with the tiredness, heavy legs, tripping, not being able to hold a cup, not able to dress himself to not being able to walk. It took about 4-7 weeks to get this way. Unfortunately we fell right at the edge of the gbs dx and that is how it was treated. After we were better from the load dose of ivig, we went about 4 months and started feeling tired and fatigued again. But PT, school, basketball, regular kid life and recovering for gbs was used as an explanation. By six months we were worse and had another ncv/emg which confirmed new demylienation which changed the dx to cidp. We now get ivig at a maint dose every 2 weeks over one day and lead a normal life regarding physical ability. Can keep up with and excel peers, runs 4 miles, swims, carries 40lbs of gear while running around in the forest playing airsoft. I am not going to lie and say things are perfect, we do suffer greatly from 2 types of migraines since this started. The first one is aseptic meningitis due to the ivig infussion and the second is from I think, the inflamation on his spine. As well, food allergies also contribute to these migrains. Another obstacle is cold/flu season. When we get sick it causes his cidp to flare. He gets tired and has pain in the areas that were most afflicted.
The best advice I can give to you is to keep a diary with symptoms and changes. These next months will be confusing in trying to decipher if it is fatigue from Pt and healing or new demylienations indicating cidp. The quickest way to confirm is to repeat a ncv/emg and compare it with the original to see if everything is the same. If you do get another ncv/emg, try to have the same neuro do it and make sure the exact measurements, nerves and enviroment are the same. This will insure an exact comparison. If you would like to talk, maybe you could leave your email and we could exchange phone numbers. Good luck and prayers to you. Courage and stregnth will get you through this and both of you will be stronger because of it!