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Posts posted by mdmom

  1. I know that CIGNA and United Healthcare both cover IVIG for PANDAS specifically (according to my friend who's son just got IVIG paid for by United).


    We have Blue Cross/Blue Shield and IVIG for PANDAS is considered "investigative treatment."


    No surprise that my son's IVIG coverage was denied last week when a well-known (to this forum) PANDAS doc tried to have it pre-authorized. This doc usually comes from an immune deficiency angle (which my son has, but not severe) when getting IVIG covered; however, he used PANDAS as the dx. The Dr's office is appealing the case on our behalf.


    Has anyone else gotten BCBS (from any state) to pay for IVIG for PANDAS specifically?


    Those of you who have insurance that covers IVIG for PANDAS specifically -- do you know what research/data your insurance company is using to support their policy?


    A little background info: My DS13 was only dx 3 months ago with PANDAS. Four doctors have now diagnosed him with PANDAS (3 of them well-known on this forum) and all agree that he needs IVIG. They all agree that an uncleared strep infection at age 3 1/2 and then a ruptured appendix/peritonitis at age 4 triggered the autoimmune response in his body. He has shown more improvement on daily Biaxin and 2 steroid bursts within the last 3 months than he has in the last 3 years with therapies, psychiatric drugs, special schools, OT, etc. You can also do the math -- he has been sick with PANDAS for 9 years with no treatment. It is a sad story (like many others's on this forum....) Diagnosed with Asperger's, then severe, untreatable OCD, Anxiety Disorder, Sensory Integration, etc. He has been hit so hard with PANDAS that we were forced to place him in a school 50 miles from home for children with special needs. But we are on a hopeful path now that we know it is PANDAS.


    I would appreciate any information you can give me.


    Thank you.

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