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mom24

Aetna and IVIG

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I have to blow off a little bit of steam here. I posted this topic a while ago and over 200+ people have read it and yet not a single response. There have been no thoughts or support- zero.( I have noticed that people have responded to other people that have posted similar topics regarding approval and IVIG). We had to suddenly switch insurance carriers and were well into IVIG treatments and were abruptly cut off by our new carrier. It has felt like our world has been falling apart seeing our child deteriorate without his treatment. We also had to cancel all of our child's scheduled appointments---which were difficult to obtain in the first place . I know we are not the only people with Aetna on here.......Again would have appreciated pointers from people who have been in our shoes.

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I don't have Aetna but I have heard that Dr. B is great at getting approval. If anyone can do it, I imagine he could, unless the insurance just won't. We had to switch to United to get ours covered and then there were no issues. I am sorry your having a tough time, insurance can be a nightmare. I hope someone else that knows more will chime in.

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Sorry, no Aetna here. We have Cigna and they refuse to pay! We had to pay OOP for our one and only! How many IVIGs have you done, some experts say too many is not good. If your child keeps relapsing that quickly have you checked for other underlying infections or issues that could be impeding recovery?

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Sorry, no Aetna here. We have Cigna and they refuse to pay! We had to pay OOP for our one and only! How many IVIGs have you done, some experts say too many is not good. If your child keeps relapsing that quickly have you checked for other underlying infections or issues that could be impeding recovery?

What experts say too many is not good? I have been looking for info about this since a PANDAS group leader told me she doesn't think you're supposed to do it as often as we do (every 3 weeks). I have not been able to find anyone or any articles to support this.

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Sorry, no Aetna here. We have Cigna and they refuse to pay! We had to pay OOP for our one and only! How many IVIGs have you done, some experts say too many is not good. If your child keeps relapsing that quickly have you checked for other underlying infections or issues that could be impeding recovery?

What experts say too many is not good? I have been looking for info about this since a PANDAS group leader told me she doesn't think you're supposed to do it as often as we do (every 3 weeks). I have not been able to find anyone or any articles to support this.

 

Dr K for one, he recommends one (HD we're talking about), wait at least 3mts to see the response before deciding if another is recommended, and occasionally he does a third. He does not do a second if there is no response to the first. That's all on his website. Also, Dr T (I personally have not consulted him, but aquaintances have) states the same thing. And I've read this a few times on the PANDAS FB sites by people who've seen him. I have consulted Dr B, and he recommends for some every 8wks, I asked him how long, and he said most kids just require a few, but some kids need several, but eventually they recover. This is DH IVIG for PANDAS, not talking about CVID or other autoimmune disorders. I think the reasoning is the IVIG (antibodies) combine with the antigen (bacteria, virus etc) forming immune complexes (to deactivate the antigen) then the complement part of the immune system then removes the immune complexes via the spleen, but the immune system can get overwhelmed if there are too many immune complexes at any one time and then they get deposited in the joints etc causing inflammation. The blood test C3D reads the level of immune complexes in the blood. This is just my read on how this all works from what I've read on the subject. I know people with immune deficiencies get it monthly usually but at a lower dose. Of course, we're not going to find anything in the literature about frequent Vs infrequent for PANDAS as that's the problem, there's not enough research on the condition, period. The NIMH IVIG clinical trial will only be the 2nd ever for PANDAS and both that and the original 1999 lancet paper were testing the effectiveness of just ONE, IVIG. Basically our kids are on the cutting edge for the right way to treat PANDAS and the knowledge gained in the present will pave the way for future generations.

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Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!

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Thanks. We have four under our belt and have seen tremendous improvement from a cognitive, attention, fine/gross motor and impulsivity. I know a MD who has a child w PANDAS and he said that he believes that there is not a cure but we just need to limit the distance between the peaks and valleys. I know that he is better that he was @ baseline 1 year ago.

DH co switched insurance so we went from going every 6 weeks to 0. They have hired a medical reconnaissance person for us to try to find a way to get approval. If that doesn't work the next step is to appeal to the State of CA.

 

DS has tested Igenix + again for the second time on 2 bands of the WB. He also gets strep and MP frequently.

 

Dr J and Dr B will adjust meds when they talk next week. It is tough since his sibling has MP all of the time and they pass it back and forth. We need to work on approval for him at some point too.

 

I was trying to explain this to a pediatrician in our group recently when I insisted on a swab. I have RA and when I get sick, my joints hurt. With my kids, it doesn't effect their joints when they get sick, it effects them behaviorally and cognitively. Still seems hard for this ped to get it. Anyway, thanks for the feedback!

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Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!

I hope it doesn't get to this. Fingers crossed that something will work. I hope that the treatment helped your child.

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