IVIG Therapy....How Can I Get It for My Son????? PANDAS...

IVIG therapy was only shown to be somewhat effective in ONE INDEPENDENT study, and as of 2010, had yet to be replicated...meaning, it basically doesn't work. There are also serious risks to consider with IVIG therapy and it sounds like it should be reserved for children with absolutely severe cases of pandas. It ALSO sounds like pandas is grossly overdiagnosed by pediatricians and family doctors, and that a diagnosis really needs to come from a specialist with experience in that area.

Who told you he needed this treatment? If you came up with it on your own (because if a dr. suggested it, he'd tell you where to go) I think I'd quit doing my own research and bring him in to see a specialist who KNOWS what to do for this. Sounds like physical and/or occupational therapy...what you'd normally do for tic disorders...is what's more appropriate. I would stop looking at the most radical treatment out there and look at the simple, noninvasive ones first. I mean, IVIG therapy is a big deal!

I did not know what PANDAS was, so I looked it up.

In Wikipedia, http://en.wikipedia.org/wiki/PANDAS, there is as section about treatment and IVIG - from what I read it is still experimental. Cognitive behavioral therapy seemed to be the most approved treatment method.

What does his doctor recommend? Since PANDAS has some overlap to Tourettes and OCD, have your tried some of those treatment methods to alleviate the symptoms of PANDAS?

United Health Care - UGH, when my son's father employer was switching to them from Blue Cross a few years ago he purchased an individual Blue Cross for my son instead of leaving him on his group plan. UHC doesn't even work with the largest hospital in my area.

I send you hugs.

I have a son who has bipoar so I know how your feeling! He wears me outmost days. I have united as well...have you contacted them about treatment? That's where I would start and if they deny you migh have to get a treatment wavier. I've had to get one when my son first started his meds because he was only 4 and united didn't cover them for his age. What I did was get the dr treating him to contact united and tell them he needed them and eventually got it covered. Good luck

There is a facebook group called "IVIG patient & provider support room" - its an open group. Join the group and ask there. They may have some helpful suggestions.

I also have heard if you go directly to the IVIG manufacturer they may provide it if insurance won't.

Also, there is a patient advocate who may have some guidance. She is also on facebook. Her name is michelle Vogel - send her a message.

Wish you luck!!!

my heart goes out to you....

what does the insurance company have to say? & what about the mfg or delivery point for the IVIG therapy?

my only recommendation is to start researching. Peace to you.

Ask his doctor for a referral. The IVIG therapy will not treat his inappropriate behavior. It provides immunity when the person with PANDAS immunity is compromised.