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Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just
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Friday, we received two envelopes from insurance company. Envelope number one: they are paying on most recent claim for preapproved HD IVIg (October, 2012) If they pay for one in the series, they will have to pay for all (three total). It was precertified and they should have been paying all along. Envelope number two: Doctor that prescribed HD IVIg is no longer a preferred provider with that insurance company. The reason I feel we lost the war with the insurance company is that: original preapproval for IVIg ended in May of 2013 and DS only received 3 of the possible 6 HD IVIg he