Reply To: 7 year old female with CIDP
Another thing I wanted to add that I forgot to say on the phone is to make sure you give her a multi-vitamin WITH iron in it. IVIG can lower the iron slightly & can case anemia. I give Emily a Children’s One A Day with Iron in it.
Also, make sure that the dr’s order blood tests to check for blood viscosity and a CBC, if she’s going to receive the frequency that we talked about on the phone. This is VERY important! The blood should be taken before the start of the IVIG infusion on the 1st day by the nurse.
We also tested Emi’s IgG levels once a month when she was on her highest dosage. This was important as we could see what level she needed to be at to make a difference.
I also forgot to mention to try and avoid salty food or foods with a high sodium content while Hailey is still on the steroids. They contribute to the puffiness.
I’ve been thinking about Hailey’s IVIG schedule & I do hope that the dr’s will consider doing what we talked about on the phone. I think every 2 weeks, in the beginning, is a good place to start – as long as her blood tests indicate that everything is ok. Then I think doing a maintenance dose every 3 weeks seems reasonable – since you said you notice the relapse at 30 days. If you do IVIG more frequently like we talked about it is EXTREMELY important to have a nurse there for the whole infusion every time. The more IVIG that is put into her the more chance of a reaction happening.
With Emily we usually go 3-4 months on a new protocol before lengthening the time again. You could try to push to be done with the every other week by the time school starts & then you could do the maintenance dose. That way it’s not as much of an interruption to Hailey’s life.
Feel free to call & talk whenever you need to.