Reply To: 12-year old son newly diagnosed

My daughter was 4 years old when she was dx’s with CIDP. She’s 10 now & lives her life like a completely normal kid. She gets IVIG every 5-6 weeks. As far as constantly watching your son – yep…you will do that. You will worry for the rest of your life for every single ache & pain he has. BUT it gets easier to deal with. You will learn what his CIDP symptoms look like & you will be able to easily decipher between those & other normal issues.

Dawn (Kevin’s Mom) will be able to help you with regards to a 504 plan. I tried to get one for my daughter but was refused because she looks normal. I haven’t pushed the issue again but will if I have to.

As far as his treatment plan…I’m an advocate for IVIG. In my personal opinion, a good neurologist will tailor the IVIG treatment plan to your son. He may need weekly or bi-weekly infusions. Some dr’s are afraid of IVIG. Personally, I would be more worried about the steroids.

My daughter was taken off of IVIG for a few months about 1 year after she was dx’d. We had switched dr’s & the new dr was an advocate for steroids. My daughter got worse while taking them. She went from relapsing every 12 days to every 9. Some variants of CIDP do handle steroids well. We switched back to her original neuro & he prescribed IVIG again & she has been steadily improving since then.

It sounds like your son may have not had the proper dosing for IVIG. He should receive a 5 day loading dose to start with, which is 2 grams per kg of his weight. You figure out how much IVIG he should get by multiplying his weight by 2.2. You take that answer & divide it up by 5 & that is what he should get daily.
For example: My daughter Emily weighs 98 lbs.
98X2.2= 209
209/5= 41.8
Her IVIG would either be rounded down to 40 grams per infusion or rounded up to 45 grams. I would prefer to round up.

He may need to have multiple loading doses before starting on a maintenance dose which is 1 gram per kg. His maintenance dose schedule should depend on how often he relapses. Each CIDP’er should have their own IVIG schedule tailored to them.

Research Dr. Dyck out of Mayo in Minnesota. I recommend his often as I agree with his IVIG dosing.

If you leave your email address I will contact you & perhaps we can talk on the phone. It really helps to speak with people & to know you aren’t alone.

It gets better…I promise.

Kelly