IVIG not approved, again. Recommending steroid burst....

[mbruin]

Hi everyone. It has been a long time since I posted. We have been dealing with PITAND with our 10 year old for about 5 years, and Lyme and all its "friends" starting in 2009. We have been rejected 2 x for IVIG - mainly because his titers aren't significant enough.

 

Our son is just working through another flare and our Dr. has recommended we go inpatient for a 1/2 day for a high dose of solumedrol(?) and leave with a taper pack. Although I only talked to his nurse, she said that he had seen similar results to IVIG.

 

I do not know enough about this to be comfortable, and a preliminary scan of past posts were mostly negative about it (they were 2009 posts).

 

Anyone out there done this as opposed to IVIG? If so, what were the side effects and ultimate results? My son's symptoms currently are about a 6 or 7 out of 10.

 

Any input would be GREATLY appreciated!

 

Thanks !

 

Steph

[dcmom]

Hi Steph-

 

My daughters both have pandas. We have had excellent results with IV solumedral. We have done it twice in both girls with tremendous results.

 

We have never done IVIG, but have done plasma pheresis.

 

We really haven't had negative side effects from the solumedral, and it has resulted every time in an immediate turn around, and then an accelerated path to healing.

 

Please feel free to ask any questions. IMHO steroids are underused as a treatment for pandas. We have been able to really maintain a totally normal life for my kids, and really shut down episodes at their start, with steroids.