8 year old son with cidp for 3 years.
What i recommend is and what works for us.
1. We go to Johns hopkins, baltimore md. for his child neurologist.
2. he gets his ivig treatments every 5 weeks (we have increased from 3 weeks) at a clinic that has a pharmast on hand that works with me.
3. I premedicate for the ivig with tylenol and benedryl.
4. I make sure his dosage is slower than what they recommend. It helps keep the headaches not so severe.
5. He gets 1 gram per kilo.
If you go to johns hopkins, talk with a social worker there and get refered to the ronald mcdonald house. We came here 3 times and could not get in (150/night local motel). We now can self refer and have been so blessed to get a room.
He does not seem any worse. He has days that i get so scared. It can consume your life. I also get the ivig magazine. It helps to read about different things. I also started keeping a journal.
if you have any other questions feel free to contact me. Joey has his appointment on monday. we are in baltimore right now. I hope our new is good this time. It is scary when this disease has no indicators. I wish there was a test he can take to see how he is doing. It is so difficult when it is not your body and you are just guessing.