ivig? | Imamother

goforit

Wed, Aug 08 2012, 1:10 am

do you know anything about it? long term side effects? dr. schulman is recomending it for dc pandas. when I try googling I get such diffrent answers who do I trust to get honest answers?

amother

Wed, Aug 08 2012, 12:19 pm

dr. schulman is the only specialist in pandas. she is not my regular dr. (my regular dr. thinks I am nuts for giving the antibotics for so long and I am soo torn) I am scared because there is very little known about pandas and I wonder if her studies and tests are done right. like a blind study? she just wants to help everyone. so I am looking in to the ivig and would love to hear from anyone that did it a while ago.

Petra

Wed, Aug 08 2012, 4:00 pm

No. Dr Schulman is not the only specialist in it. Maybe she is the only one with a blog about it though. When in doubt second opinion.

Liba

Wed, Aug 08 2012, 4:44 pm

Will your insurance pay for IVIG for pandas? My experience is only with adults, so I am no expert in side effects with children, but it is a very expensive treatment that is usually difficult to get insurance to agree to pay for.

Hatlzacha figuring it out!!

amother

Wed, Aug 08 2012, 6:32 pm

Liba wrote:

My experience has been the same as Liba's. However, (and am not a Dr.) since IVIG is something the body normally produces anyway, I would think that the likelihood of side effects would not be high. It's used to treat many other illnesses, if I could get insurance to pay, I'd do it for my condition.

amother

Thu, Aug 09 2012, 1:33 am

I looked into this as an adult for myself but in the end the dr's decided on other treatment.
I was told that the risks are low but if they happen they are severe (like risk of stroke)

amother

Fri, May 10 2013, 12:02 am

Did you end up going ahead with IVIG? how is your dc with PANDAS doing? my dc has it. got it 3 yrs ago. there is currently a study through Yale on the effectiveness of IVIG for pandas. the results wont be for a few years. I didn't even know about IVIG when when he first started with pandas. the end result is my child is on meds for OCD/Tics and ADHD (he may have had ADHD anyway but the OCD/Tics definately is related to the PANDAS. His Tics are under control BH! his OCD is present but not interfering in daily life. and his ADHD is present but controlled somewhat through medicine. I hear IVIG runs 40k I don't know that we can do it without insurance but I plan to ask my pediatrician about this next time I go. I hope you check this thread, I would love to hear an update. did you do IVIG? if yes, how was it? how is your dc now? hatzlacha with your dc!