IVIG appeal

[momslove]

I'm a new participant to this forum, but have been following the posts for some time now. Our 16 year old daughter received IVIG this past August as recommended by two doctors often mentioned as PANDAS experts. Prior authorization by our insurer was denied because it was considered "experimental due to inadequate evidence of the effectiveness of IVIG infusions for treatment of PANDAS", but we went ahead. We have filed an appeal which will be considered very soon. In our initial appeal letter we presented information from medical literature. (This forum was very helpful to me in that regard already.) We noted the history of treatment provided to our daughter, the ongoing suffering of our daughter, and the laboratory evidence of infection and immune system dysfunction. We won't be able to attend the appeal review meeting, but may submit additional information to be considered. Have we omitted important information that should be considered by the appeal committee? Thanks.

[qannie47]

When I appealed, I was told that the letter I wrote that spelled out in detail just what we were experiencing, along with success using IVIG, steroids was what persuaded the neurologist to recommend coverage. So I am glad you thought to write a letter.....best of luck

Edited February 28, 2014 by qannie47

[PowPow]

did the IVIG help?

[momslove]

I would love to be able to report in our appeal that the IVIG made all the difference, but it's not that simple. She did show improvements and started back to school full time! She had much difficulty doing so, but did it. On Monday of the 4th week, she said she had a "gunky" throat and it was downhill from there. She has not been in school since the middle of October except 2 partial days in January when we tried to transition back to school...

[momslove]

The appeal committee reviewed our appeal today. They now have 30 days to tell us their decision.

 

I spoke with the advocate yesterday to answer some questions she had. That left me thinking... Do any of the leading PANDAS doctors refuse to use IVIG for PANDAS/PANS treatment or is it safe to say that it is a standard treatment option?

[nicklemama]

I don't know that any refuse it. Never heard that. They all have their individual opinions about how, when, why, and frequency it should be used. Some have better access to offer it.