Help please: insurance med. necessity / efficacy of IVIG for PANS / autoimmune encephalitis)

[tj21]

Cross-posting, though I see many of the same members here.

 

Hi all,

It's been awhile. We were approved and did a HD IVIg Jan. 2018. Approved for on-going monthly LD through Nov. 2018, however those are triggering (immune-stimulating) DS18 so trying to appeal insurance (BSCA) for 65gmx2 every 12 weeks. They already approved 65gmx1 every 4 weeks, so this would be less costly and less frequent, ultimately.

But then we get to medical necessity. Any other advice re. dx, does have hypogammaglobulinemia dx. But as mentioned above, also has PANS, so needs IGg levels to stay high, but also needs immune-modulating of the high dose.

Thanks, Tracy