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mom md

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My oldest son is beginning to go down the path again. His symtpoms resurfaced in August (5 months after his last IVIG). They were mild but the three specialist he is seeing here were all in agreement that he needed another IVIG. BCBS of NC then denied it saying it was experimental. They payed for PEX and two IVIGs already but I think they finally connected the dots. All three doctors have written letters on our behalf and now we are waiting. I e-mailed them tonight to see if someone would just pick up the phone and call. My next step is to request a peer to peer review, report it to the insurance comission, and then sue.

He has started his repetative touching things again (number 5 is the current number), and describes this "string" attached to his back that pulls him back. Very wierd but exactly what he described before he had his bad episode last November when he started falling down and had chorea. He has also started having severe nightsweats again, the dark circles, etc.

My question is, if I pay out of pocket with my credit card does it make it more difficult to get it retroactively covered. My guess is yes. I would also think it drops down the doctor's priority scale when they know he has had the IVIG.

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I don't know the answer to your question, but I'm guessing that one problem is that the insurance would likely only cover their negotiated rate... and you may not get the BC/BS negotiated rate up front if you pay with a credit card. Hopefully that's something you could negotiate with the doctor under the circumstances - to give you the negotiated rate up front. In our experience, the "rack rate" for IVIG for my kids has been as high as $7600, and the negotiated rate has been as low as $2300. If you are going out of pocket, I would recommend trying a Coram Health center, as they were great for us and have a much lower rack rate.

 

Do you think you could successfully sue? Unfortunately in the absence of immune deficiency, I think IVIG is still "experimental" for PANDAS, technically, and they could argue that he already had it twice, so evidently it wasn't successful (I'm not arguing that - I'm just always suspicious of insurance companies and how they argue). But it sounds like he's had chorea - shouldn't it be covered for that? I thought that most insurance companies covered IVIG for SC?

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I did call Coram and they quoted 8000-8500 which is exactly the quote I got from another IVIG home infusion company. I know they could argue it did not work but here we are 6 months with basically NO symtpoms until recently. That is the longest stretch of normal we have had in several years.

He did have chorea and I think that is why they have picked up the bill so far. The chorea is still gone but I know we are headed that directoion. I have seen some sporatic movements but nothing that does not pass quickly. I refuse to wait and get that bad though before we treat him. My husband agreed tonight we would try these tactics and then if they fail or they are just taking too long we will move forward. I don't know if I could successfully sue but I may inquire with my sister and father who are both attorneys. Maybe just a letter on letterhead might get their attention!

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Again I'm no expert, but it seems to me that you have a strong case with the chorea... It's hard to know with insurance, though. My kids get IVIG covered because of immune deficiency, but our doctor has told us that even with that, the insurance requires them to go off after a year and wait to see if they get "bad" again (recurrent infections over several months) to justify going back on it. And we have CVID, so not just a minor deficiency - so this seems crazy to me, that we'll have to wait until they've gotten multiple infections before we'll get it covered again. I'm trying not to worry about that until we get there, but my gut feeling is that, like you, we'll want to jump in at the FIRST infection and just pay for it ourselves if need be, rather than take the risk of waiting until they've gone downhill... I'm not sure how you get out of that expensive cycle, though...

 

I hope that you succeed!! Great to have attorneys in the family in such a case!

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I am not sure of the answer to you question either, but we paid out of pocket because United Healthcare/Oxford denied coverage for IVIG based on it being experimental and investigational. We went through the peer to peer review, an expidited appeal and regular appeal and were still denied. We took it to the CT state insurance commison and they reversed the denial. They will refund for the IVIG we paid for and cover another. Since they have already paid for your son's IVIG in the past, how can they deny it now under the experimental excuse? That makes no sense AT ALL! I believe that insurance companies will deny, deny, deny, thinking that you will just give up and go away. They obviously have not had to deal with a lot of PANDAS parents. Everyday is a battle with something bigger than they can ever imagine. It is a crying shame that we have to add the stress of fighting insurance to fighting for our children's lives, but phone calls and paperwork, that's the easy part of this crazy PANDAS world.

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Many things that are happen to Carter mirror what is going on in Thomas' life. We last got IVIG at the end of January. After a few weeks of "turning back the pages" tics we were living in bliss. All that changed on June 21 when Thomas pulled out a loose tooth. (there was a quarter size glob of blood after he twisted it out) That was obviously enough to get some bacteria in his bloodstream. Within hours he was ticcing badly. We upped his Augmentin for a month to 875 BID We got some relief but his tics have never completely come down to his baseline of mild vocals with an occasional head turn.

 

Eventhough Dr. K didn't think that it would make a difference after a month, I kept him on 500 mg BID for another 6 weeks. We saw no change and he was starting to get some stomach issues. We tried a Prednisone taper but that has no effect. Prednisone was the one drug that really worked for Thomas in the past. Now like everything else its effectiveness has gone by the wayside. His PED here thinks that he had PANDAS and now has a some residual neuro effects that should be treated. (her son has a tic disorder) She put Thomas on Clonidine. It almost seemed like it was going to work for a few days. It does clear the "cognitive fog" but after 1 1/2 weeks no affect on the tics. Through almost daily contact with his very nice teacher I have been able to keep him in school despite the fact that his tics are very noisy. She has told me that all the kids seem very nice and no one has said anything to him. My biggest blessing has been that Thomas seems blissfully unaware.

 

This weekend his loud vocals turned into all body tics. Arms, legs, head, shoulders. He looked like something from the Exorcist. In desperation gave him 1000 mg of Augmentin last night. This morning he awoke looking better, not great but better.....loud vocals but no arms and legs. He wanted to go to school.

 

So he obviously needs some IVIG but where to get it ?? We have gone to Chicago twice but that is sooooo expensive with the drug, facility fee and travel expenses. BC/BS of NC has paid in the past but now I worry that they won't. I know Dr. k codes as "encephalitis" but it can't be too long before they connect the dots to PANDAS. if you can get a SC diagnosis does that make a difference ? Thomas' Cunningham score was high PANDAS almost SC. The funny thing is that I used to give IVIG as a Coram home infusion nurse all the time. (I lived in Pittsburgh and we saw lots of deficency patients.)

I know I could give the IVIG safely at home !! Thomas has never really had a reaction to it if you give him the Tylenol and Benedryl. No N/V...no HA...n nothing ! I need a Mexican pharmacy that I can trust ! Anbody no one ? I am rambling...sorry

 

Thanks for "listening" I am just so tired of doing this.

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Oh, one other thing.... I have looked at the statements of what the insurance company has paid for the IVIG, and it appears they pay only a tiny fraction of what someone would be asked to pay out of pocket.

I know this is common-- private payers get really shafted-- but I have often wondered if it's possible to negotiate with either the doctor or with the insurance company so that you could at least get their rate.

It seems so unfair that private payers have to shell out so much more than insurance companies!!!

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My oldest son is beginning to go down the path again. His symtpoms resurfaced in August (5 months after his last IVIG). They were mild but the three specialist he is seeing here were all in agreement that he needed another IVIG. BCBS of NC then denied it saying it was experimental. They payed for PEX and two IVIGs already but I think they finally connected the dots. All three doctors have written letters on our behalf and now we are waiting. I e-mailed them tonight to see if someone would just pick up the phone and call. My next step is to request a peer to peer review, report it to the insurance comission, and then sue.

He has started his repetative touching things again (number 5 is the current number), and describes this "string" attached to his back that pulls him back. Very wierd but exactly what he described before he had his bad episode last November when he started falling down and had chorea. He has also started having severe nightsweats again, the dark circles, etc.

My question is, if I pay out of pocket with my credit card does it make it more difficult to get it retroactively covered. My guess is yes. I would also think it drops down the doctor's priority scale when they know he has had the IVIG.

Did you know that sweats, particularly night sweats, are a sign of Babesia? Babesia is a tick-borne illness like malaria that is treated with anti-malarial medicine. The testing for Babesia is very unreliable as it is very hard to find in blood. I think there are 13 types of Babesia and the tests only test for two types: Babesia Microti and Babesia Duncani. This is considered a coinfection of Lyme Disease, although you don't have to have lyme to have Babesia. Babesia can also cause psychological symptoms and specific leg pains-thigh cramps, as well as air hunger (an inability to get enough air when you breathe). Babesia can also be present with no symptoms at all but it can make someone very sick if they have babesia and then they get lyme. Lyme can cause weird muscle and skin sensations and dark circles under the eyes as well. It would definitely be a good idea to see a lyme specialist to see if they think your son could have one of these tick-borne illnesses. The good news is that these infections are treatable with specific medications and lyme doctors know how to get rid of them. NC has a lot of lyme but the NC Medical Board is hostile to lyme doctors. I know of only one doctor in the state who will treat lyme. PM me if you want the name. Otherwise you will likely need to go out of town to get a consultation with a tick-borne disease specialist. Contact Ilads.org for a doctor who has been trained by the International Lyme and Associated Diseases Society, the group that most lyme patients look to for the best advice/treatment for these very sneaky tick borne diseases. You will also be able to see a good list of symptoms on the ilads website: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. If you would prefer, you could start with Igenex testing for lyme but I personally would go see a specialist asap. If these infections are causing the symptoms you would not necessarily need the ivig, just the right combo of meds to treat the infections. Good luck.

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mommd-

 

SO sorry you are going down this road again. Do your doctors have any idea why? was he sick? could there be an underlying infection?

 

So as far as insurance goes. We had two daughters have pex. The first went in supposedly pre approved, but the insurance co denied it post procedure. They wouldn't pay the hospital. We hadn't really done anything with that when the next daughter went into crisis and needed quick pex. Of course the lovely insurance co denied the initial request, so we went into appeal (which can take like 20 plus days- which we did not have). Because of the mess up with first daughter, hospital required written pre authorization or pay up front. We waiting on the insurance co two weeks, while dd suffered and got worse. Finally we said we will pay up front, get us in. We paid about $26k to the hospital. After dd got home from procedure, we rec'd approval for both girls from insurance co. BUT the insurance co only sent us $5k (that is the contract rate) for the dd we paid out of pocket to. To make a long story short (lots of phone calls and aggravation), our insurance co said the since it is an in network hospital they are required to reimburse us- and the hospital did end up finally sending us a check for $19k.

 

So- if your doctor/hospital/etc is all in network, I think you would get reimbursed. Be prepared for it to take a few months. Make the doctor hospital etc, aware you are still pursuing insurance coverage. We finally got approval in an appeal AFTER the peer review (that was denied). We called on my husbands human resource dept to fight with us- which I think helped. During the appeal process, my husband, myself, our doctor, and my husband's hr director called the insurance company every day. Our doctor wrote a letter and sent med records stating that delay of treatment was endangering my daughter's health. We gave them any study we could find.

 

Good luck. Pandas is SO difficult to deal with- I found myself really angry at having to deal with insurance co too. Hang in there.

 

PS: We were resigned to spend the $26k in order to get dd well- I think that is a good place to get to when dealing with this- so you are not devestated if you don't get reimbursed.

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