IVIG & Equilibrium Issues

[mommakath]

Okay, DD14 been getting IVIG for almost 2 years. The last few months, she has been having issues with equilibrium afterwards, lasting about 10 days. Six months ago it would manifest as severe motion sickness only in the car. The last three months it has changed to being more of it appearing as though the floor is moving. It is worse in smaller rooms. Docs have been perplexed. Ears have been checked out by pediatrician. He is referring us to an ENT but mentioned us talking with IVIG doc about it and see if her body is being sensitive to the IVIG which would mean possible discontinuation, in his opinion. He is not a pandas doc but he is willing to read up on it all and remain open. He gave meclizine, told us to reduce benadryl, and get with IVIG doc.

 

She takes 15 mg prednisone day before, solumedrol with infusions day 1 & 2, 25 mg bendryl and motrin every 6 hours starting day of infusion and going for 3 days post. She has had bad headaches and vomiting in past on day 5/6 after infusion so that's the reason we carry the motrin and benadryl out so far. Has helped with those symptoms. We did not have equilibrium issues until a month after we changed to Gammunex C and started monthly ivig from every other month. With the change to Gammunex C she is getting more fluids - 500 ml saline pre and post, 1000 ml D5W with IVIG. Wondering if increased fluids could be a part of it. Although, last infusion we cut post saline down to 250ml to see if it would help. No change.

 

Any ideas? Ever experienced this?

 

THANKS!

[kos_mom]

I can only comment on meclizine. Earlier this year I was struck suddenly with severe vertigo. It was a Sunday so I had to go to the ER. They concluded it was either a virus or something like little things in the ear canal (something like that) being misaligned. They advised going to an ENT for followup and gave me meclizine. I didn't get to the ENT until Friday and they tested for the little things, which I did not have, and concluded it was a virus. Then I asked the doctor whether I should continue the meclizine. He was shocked I was still on it. Apparently, it is great for quelling the immediate vertigo but the goal should be to stop using it as soon as possible because it interferes with the body's ability to overcome the balance issues on its own.