IVIG cancelled...last minute

[tpotter]

We were scheduled to go to Chicago today for IVIG with Dr. K. Insurance denied it, and I spent all day yesterday fighting it (I even sent a complaint straight to the insurance commission, and cried when talking with the insurance company. There's a few very questionable things about what they are doing (claiming that it's experimental, but he had IVIG last year with Dr. L, and it wasn't "experimental" then.) Today, a supervisor called me, and she was very nice. Said that they were going to send it to an "independent" reviewer who had nothing to do with BCBS, and s/he would look at the literature. I specifically told her that NIH recommends it, and to look at Dr. Swedo's work, as well as Dr. Cunningham's. It blows my mind that anything that causes inflammation in the brain, whether "post-infectious" as it was coded or just "encephalopathy NOS" would be considered "experimental". It also cost me 2 plane tickets (SW Air gave me credit, but we don't usually use SW.) It's also costing us a lot more time to get his treatment done, and we don't have anything else lined up...and can't until this is approved! AAARGH!

[bubbasmom]

If you know anyone that has United healthcare that company specifically states on there website PROVEN TREATMENT FOR PANDAS. Someone on here told me about it and that's who we have. But maybe you could use that as a reference. Or maybe ask the company that makes whatever brand IVIG you're going to use to see a copy of their medical proof such as case studies.

[peglem]

Oh, sorry to hear this, sorry that you have to go through all this crap when all you really want is to help your kid feel better.

[melanie]

BCBSnj did the same thing to me last year.I had an infusion under PANDAS dx and then when they were going to do it again they said they made a mistake the 1st time.I had to get it approved under a specific immune defiiencydx then they were ok.

 

So sorry they stink when you need them.

Melanie

[tpotter]

What was the specific dx? The worst part of this is that we have been waiting a long time for tx of either kind...he was supposed to get PEX, but that got put on hold (even had the insurance approval!) Then we tried another dr., who said he'd consider PEX after he spoke with Dr. Swedo and another dr. He has yet to do it (1 1/2 months later.) I finally scheduled IVIG with Dr. K, as my "safety net", and now this! I did get insurance to write down for their "independent" reviewer to check Dr. Swedo at NIH (that always sounds good), as well as Dr. C, who has a grant from the NIH.

[melanie]

specificmimmune defiency thats what I think it is.Dr B is tring to get approval now for us to go to conneticut.Is Dr K in network with BCBS?What are your Out of network benifits? Im not sure if its because of out of state.

 

Melanie

 

Did you call Dr B?

[tpotter]

Dr. K is now in network with BCBS, but we found out yesterday that, apparently this is a "medical rider" that requires different things for "out of the area" in network providers than for "local" in network providers. I don't understand in the least why it would be this way, and we certainly didn't know that when we originally paid 4 or 5 times more for this plan than the local plan!

 

But, I'm hoping it comes through soon, and I did report it to the State Insurance Commission (I started that letter with "MY SON HAS POST-INFECTIOUS ENCEPHOLAPATHY AND INSURANCE IS REFUSING TO PAY!" I wanted to get their attention.

 

The problem with using the immunodeficiency one is that these doctors that we are using are not immunologists.

[melanie]

good point about not being an immunlogist.Call Dr B. Where do u live?

Melanie

[Kayanne]

Sorry, you have to go through this...sending prayers your way!

[JAG10]

I have Independence BC/BS too and the HMO (Keystone) not the PPO. Here's what has happened with us so far....

 

We paid for everything up front and our attitude going in was if we were reimbursed anything, great! To upgrade to the PPO would have cost an increase of $4000 in premiums, so we did not pay that this school year or last and figured paying that amount "out" in our decision. When the doctor's office told us to "contact" their insurance company, that made me uneasy. Either I'd have to play really stupid or I was afraid I was going to say something that was going to blow it.

 

Long story short, I did not call. Oakbrook called and the insurance company said they had no info from the doc, which I knew. Oakbrook submits a bill for 3 codes; 2 IV codes and the Gamunex. Keystone pays 70% out of network for the IV codes totally $4550! This amount has already been paid and Oakbrook is sending it to us. This is with NO info from the doc, they are still waiting for that to make a determination about the Gamunex and the physicain's fees. So, with no pre-cert and if they decide to pay, we could get dinged another 20%, so 50% of $7000 (Gamunex) and $2800 (physician) is still on the table, which if we did receive would be almost $10K and we paid out a little over $11K.

 

I did nothing right and everything wrong and may be benefitting from some dumb luck.

 

Another person you can consider contacting is PA congressman Dennis O'Brein. Denni is a HUGE autism advocate, he has 4 school-aged sons and he is incredibly compassionate. If there is anything he can do to help you, he will!!!