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HopeinHIM

""Vaccine test""" required by insurance for Ivig OR won't pay

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Our DS13 has been treated for  PANS/ chronic fatigue/Lyme's for three years.   Our insurance company requires us to  vaccinate for pneumonia in order to meet the criteria they set OR they wont cover IVIG therapy for our CVID son. Our Immunologist who works with lots of PANS kids highly recommends it bc she says its harmless and could help protect him as well as help his case if we need to move to IVIG (so it will be covered).  There is no way around it for  CIGNA and yet so many parents have had bad experience with vac's. We haven't vaccinated him since a baby and limited then so really afraid ! but he has NO protection from pneumonia according to his labs. Dr J insists it will help in many areas and she has  not  seen any issues. UUUHHHGGG!!!  Stable now for 1.5 years. 

Edited by HopeinHIM

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We did the vaccine challenge when my daughter's Natural Killer cells were at 1, and surprisingly had no ill effects. She qualified for a year of IVIG.

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13 hours ago, laure said:

We did the vaccine challenge when my daughter's Natural Killer cells were at 1, and surprisingly had no ill effects. She qualified for a year of IVIG.

Hi

If it;s just for the Insurance then i prefer NOT to do it.  BUT if it will help him stay strong in school next year we will do it. Our doc has such a thick accent, it's hard to get thorough answers. You mention vax in the PANS world and hear horror stories.  His immune system has improved with better diet and supplements for sure but his pneumonia titres? are very low. He has very little protection against that.   At this point he is boarder line CVID but not there. NO SCHOOL three long  years so not much exposure to illness.  "FEARFULL"

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We were definitely in a very bad place and at the end of the line.  4 years of high dose antibiotics, including a central line IV for 6 months, 3 weeks at Rothman clinic trying to address OCD, not attending school, commuting over three hours to work twice a week so she could live a slightly better life...it was a hard decision, but honestly we didn't have much to lose. We were thrilled when she qualified.

Our story is too long for this thread, but our daughter is 100% and has been for the better part of two years.  SO thankful to everyone on these forums and the special, determined parents and their kids we met who helped us over the finish line!

 

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