Getting around vaccine challenge for CVID dx

[mdmom]

I am being tortured - literally - by having to appeal my insurance company for IVIG for CVID (yes, there's PANDAS too) for my DS14. His IgG level is low as is IgA - insurance wants to see at least 2 classes of antibodies low. They are denying (but case not closed yet) on the basis that they do not have documentation that he has failed a vaccination challenge(because he hasn't been challenged). Here's the catch - Dr. B. (who we no longer see) 18 months ago said that he should no longer receive vaccines because of autoimmune issues.

 

Has anyone been successful in circumventing this requirement with their insurance? Our policy for IVIG and CVID dx is so very specific.

[tpotter]

I am being tortured - literally - by having to appeal my insurance company for IVIG for CVID (yes, there's PANDAS too) for my DS14. His IgG level is low as is IgA - insurance wants to see at least 2 classes of antibodies low. They are denying (but case not closed yet) on the basis that they do not have documentation that he has failed a vaccination challenge(because he hasn't been challenged). Here's the catch - Dr. B. (who we no longer see) 18 months ago said that he should no longer receive vaccines because of autoimmune issues.

 

Has anyone been successful in circumventing this requirement with their insurance? Our policy for IVIG and CVID dx is so very specific.

 

 

We did, but not for CVID (it was for SAD, which is even harder.) We had to fight it, and we had several doctors verify that my children had had severe reactions to vaccines, and that it was to dangerous. Then, again, it was Dr. B. who said it. But, don't you see Dr. L? Would she do it? Also, have you read the policy carefully. Does it specify that you have to do a challenge, even if there has been a reaction in the past?

[mdmom]

We don't see Dr. L. I did get a letter today from Dr. B stating that he should no longer have vaccines (the office was kind enough to write this for me even though he hasn't been a patient there for 18 months. we see someone at NIHA in D.C.

 

I don't have any documentation (nor do any of our present or past docs)that says he has had a bad reaction to vaccines. We know he spiraled downward quickly following the FluMist, but this is the only one that sticks out in my mind as far as reactions go. And he hasn't had a vaccine since then - he had it 6 years ago.

 

Thanks for brainstorming with me.

[mdmom]

Still looking for someone else to chime in here. To those of you who have gotten IVIG approved for your children, did you get it based on an Immune Deficiency dx? I cannot imagine that all of our children meet the requirements of immune deficiency, so I'm wondering how your doctor proved the dx? My son's CVID dx is valid, but insurance says it's not valid enough.

 

They will not let go of the requirement of a vaccine challenge (failure to respond to a vaccine) to prove CVID. I even have a patient advocacy service helping with the appeals.

 

It is literally killing me to read of other families getting this treatment for their kids and my DS14 sits here waiting for the insurance company to keep denying the treatment- he went undiganosed for at least 9 years and we have been told by a few of the popular PANDAS docs that this is the only thing that will stop the autoimmune issues.

 

Is DS14 making progress on Lyme and co-infection treatment? Absolutely. But I can see that there is still alot of clean-up that needs to happen - plus his IGG levels are down to 600, so he's not fighting infection on his own (hence the CVID dx).

 

Would love to hear from others. This is a lonely journey.

[PowPow]

I believe my child was diagnosed (honestly and correctly) with post-infectious encephalitis and strep infection. Maybe not everyone fits that diagnosis, though. We see a neurologist. Our ins did pay.

I understand how you feel, watching everyone else's child get tx and you are sitting by the wayside. I felt that way on here for a long time.

Have you considering paying out of pocket? We did that once (as the first IVIG was done in a doc's office who did not take insurance.) It was expensive- as my child is older and was quite heavy for her age at the time. I did and do not "have the money" for it- but we had to find a way. That has been the whole deal with PANDAS anyway- always trying to find a way.

This journey has pretty much financially ruined us- or at least set us back 10 years- but my daughters are better and we are hopeful for their future now.

I hope you do not take offense- just trying to let you know you are not alone.

Maybe a different doctor would be able to see if your son has a different diagnosis- in addition to CVID? I mean Dr B looks from an immunology point of view, LLMD from lyme and Neuro from the brain/CNS.

[minimaxwell]

Luckily for us we got it covered b/c we have United and they cover lVlG for PANDAS. I have 2 close friends that have BCBS MA , both paid out of pocket with dr k but got reimbursed. It seems like many get it covered as post infectious encephalitis.

[tpotter]

Luckily for us we got it covered b/c we have United and they cover lVlG for PANDAS. I have 2 close friends that have BCBS MA , both paid out of pocket with dr k but got reimbursed. It seems like many get it covered as post infectious encephalitis.

 

 

And for that you have to see a neurologist. We see many different specialties for this exact reason.

[peglem]

My child did the pneumovax challenge-2X. The 1st time their was almost no response, so vax was repeated and then we did see a response. @18 months later, those titers were low again, and the doc (local immunologist)wanted to revax (basically do another challenge). I declined doing the same thing again (which solved nothing, apparently), but we did get approval for IVIG based on immune deficiency. We had UHC insurance at the time.

[Kimflow]

mdmom,

 

First, sorry that the insurance company is making it more difficult. I am not sure it would be of any extra help to you, but if you yahoo or google search "IVIG, codes, Dr. B" or similar searches, you will find that alot of specific ACN latitude posts actually come up with information regarding codes used, policies, IVIG,etc. How do I know? I just printed a few out the other day. I do it this way as I have not yet mastered using this forum's search option.

 

I just went and looked at my papers....the one thread with diagnosis codes was under poster GraceUnderPressure. June 20 2011

 

I hope all works out for your son and your family.

 

K