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Advice for those hoping to get IVIG

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I've read some recent posts of people calling their insurance companies about IVIG for PANDAS.




It is also worth noting that there is no diagnosis code for PANDAS.


Most insurance companies are not covering IVIG for PANDAS. Some doctors are successful at getting coverage for some patients using alternate diagnosis codes(e.g. post-infectious enchephalitis). Others are getting IVIG covered because of a Primary Immune Deficiency diagnosis.


Mentioning PANDAS to your carrier is going to raise red flags.

Edited by mdmom
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I second this - Everything that you discuss goes on record...and, as much as we would like to believe that our private insurance companies are on our side for excellent care, they are also in the business of weeding out "unnecessary" treatment. My son was denied first as "treatment is experimental and not covered", then under a diff. dx from a diff. doc (SC) as "unnecessary treatment. I was too worn out and time was way too short to go thru the appeals process, as he needed the treatment sooner, rather than later. Best out of pocket money we ever spent, but would have been nice if insurance had paid for it! Although we knew not to call the insurance company, we did speak to my husband's human resource dept. under the advice of a nurse, who said they might be able to "pave the way". I am pretty sure this is where we went wrong, as I think the human resource lady used the word PANDAS" with the insuarnce company. Expensive bummer.

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I took my daughter in for a strep throat culture two weeks ago. I reminded our ped NOT to put down PANDAS as the dx for the culture. We have new insurance this year and I don't want it in her file.

btw- the culture was negative but I received her labs in the mail later that day and her d-nase was elevated. She never cultures positve- twice I think, and that was a few years back.


Good reminder mdmom!

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I do not even say PANDAS to doctors (when I see a new one). I just say that she has an autoimmune disorder that is triggered by infections. If they are savvy they know what I'm talking about, if not- I've described the problem pretty well and they don't have to ask me what PANDAS is or go thinking that I self dx'd off the internet.

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