Controlling IVIG side effects

My son had a delayed bad reaction the first time he had IVIG – horrible fatigue, bad headache and vomited approx. 36 hours after infusion. Headache was so bad they needed to do a CAT scan to rule out brain bleed from low platelets. The headache ultimately went away after doctors gave him Tylenol (when they realized no one had given him any). Because of this, I was really not looking forward to them treating him a second time.

But, the second time he was administered IVIG (the hematologist suggested we give IVIG one more try even though it also only boosted platelets from 2 to 30) the doctor decided to combine it with an infusion of methylprednisolone. Essentially, they infused methylprednisolone for the first hour and when that was done they infused the IVIG. The one dose of methylprednisolone along with some Tylenol every 6 hours for the first day or two prevented the bad headache. While my son still had a little fatigue, the only side effect was a little bit of irritability the next morning from the steroids. They did the same thing the third time he had IVIG and again, he only had some fatigue (with no irritability).

Has anyone else’s child been given this combo as a means of preventing headache? Did it work?

As a possible added benefit, there are also some ongoing trials as to whether the combo of one initial dose methylprednisolone + IVIG helps boost platelet count faster and higher than IVIG alone.

Kayla has always been pre-treated with tylenol, and Benadryl for both IVIG, and WinRho.

I a glad you posted about the side effects. My son is 4, he had headaches, I am guessing after IVIG treatment on 3-12-11. WE had a great PICU nurse that explained the symptoms and why pre-med of tylenol and benadryl. It was his third IVIG treatment. I am worried because he had very low blood pressure during treatment. My son won't tell us how he feels, afraid to go to doctors again. I have to watch everything. I am sorry your son had that bad of headaches. I hope things are on the upswing for you.

Angela

My daughter also had a horrible, very similar, reaction (it's aseptic meningitis) about 36 hours after the treatment. She also had to have a CT and was admitted for observation. Second time: pretreated with tylenol and benadryl (just like the first time) but also kept it up round the clock every few hours throughout the infusion and 36 hours after, plus she took a five day course of very low dose decadron. No problems. Third time: pretreated with tylenol and benadryl, and maintained for 36 hours, but she was having a slight headache at the twelve hour mark and was given a shot of decadron (no pills) at discharge. No problems. The other thing we learned and implemented the second and third time was to aggressively hydrate. Lots of water throughout the infusion and for at least 36 hours after. Hope this thread helps someone avoid that horrible IVIG reaction. IVIG is highly effective for my kid, as long as we can avoid the aseptic meningitis.
Norma

Thank you very much!! I talked to our child's hemotologist, he said I did the right thing observing giving tylenol after and noticing a change. It is so stressful, did they hit their head or is it a side affect. I watch our 4 year old like a hawk,but you never know. The hyndration makes complete sense to help with side affects. Thanks for the input!!

We do WinRho and she gets Tylenol, Benedryl, Zofran and a Steriod. These all help with Headaches, Nausea, the shakes. I hate putting her on so many but I hate the side effect more.

We had similar problems with IVIG, but now it goes pretty smoothly. My son takes Zyrtec at the beginning of the infusion instead of Benadryl. It makes him less sleepy and it lasts 24 hours. I also give him Tylenol around the clock for 24 hours, starting before the infusion. He had Decadron for a couple infusions, but then we stopped that and he continues to do well.