Well this day sucked...

[wornoutmom]

Ugh - feeling depressed. Just found out insurance is turning down the IVIG pre-approval. Will only cover for 40 conditions, none of which come close enough for the neurologist to code with. I guess I was just hoping for miracles. We have to talk with the office again Monday to see how much it will cost out of pocket, but its just another setback. More waiting, more decisions. We will probably ask Dr T for a steroid burst first now - the "diagnostic" test. Ds has been off Biaxin since Monday. First time off abx since January 8th. Got sick AGAIN Tues with headache, fatigue, stuffy nose and our of school Wed, but doing ok since. OCD checking was ramped up last night but no major setbacks. Talked to our local immunologist today (a PANDAS skeptic) who ordered us a CAT scan on the sinuses for Monday to see if these symptoms are indeed from chronic sinus issues or something else. He said he was not comfortable testing our whole family for strep or anything else, but would "consider the appropriateness of this" should the CAT scan show continued sinus issues. I really don't understand what the big issue is with this??? It seems so easy!

[JAG10]

Really sorry for the rough day!

I'm trying to recall your son's details; he had a PET scan w/inflammation and low immunoglobulins, yes? I remember someone posting an immuno-deficiency website that has specialists to help fight insurance coverage denials. Maybe someone can re-post that link. Do you think one of the 40 conditions is a close fit for your son?

[kimballot]

I am so sorry to hear this. If anyone has a case it is you with your PET scan results. Hoping someone here can help. What will it take for the IVIG pharma to fund some research? We need it.

 

Ugh - feeling depressed. Just found out insurance is turning down the IVIG pre-approval. Will only cover for 40 conditions, none of which come close enough for the neurologist to code with. I guess I was just hoping for miracles. We have to talk with the office again Monday to see how much it will cost out of pocket, but its just another setback. More waiting, more decisions. We will probably ask Dr T for a steroid burst first now - the "diagnostic" test. Ds has been off Biaxin since Monday. First time off abx since January 8th. Got sick AGAIN Tues with headache, fatigue, stuffy nose and our of school Wed, but doing ok since. OCD checking was ramped up last night but no major setbacks. Talked to our local immunologist today (a PANDAS skeptic) who ordered us a CAT scan on the sinuses for Monday to see if these symptoms are indeed from chronic sinus issues or something else. He said he was not comfortable testing our whole family for strep or anything else, but would "consider the appropriateness of this" should the CAT scan show continued sinus issues. I really don't understand what the big issue is with this??? It seems so easy!

[dcmom]

Can you appeal? We finally got approval for pex on the third level of appeal...

[wornoutmom]

His IgG's etc are all normal, (tested twice) and so can't qualify under any immuondeficiency guidelines. Our insurance (Aetna) has apparently been very difficult with the drs office and keeps referring them to the web site instead of talking with a real person. Drs. office said they were looking into seeing if insurance would at least cover administration costs if we paid for the drug itself, but apparently the CPT codes they used are not covered by Aetna. Not sure what the next step is. They talked about doing a mock up claim and seeing what the result/rejection code was. That might get us something to take to our HR. I'm not hopeful. We could probably swing one IVIG, cost wise, but not more. After all these years, I am so tired of just treating symptoms and infections as they pop up. I keep thinking about "what happens with the next infection", as it appears strep was the original antecedent but not the current problem. I was just feeling like maybe the IVIG would solve that problem. Even if we can get him stable with other meds, I've seen too much to know that it's only the next mysterious illness to send this down the tubes again.....

[7upMom]

His IgG's etc are all normal, (tested twice) and so can't qualify under any immuondeficiency guidelines. Our insurance (Aetna) has apparently been very difficult with the drs office and keeps referring them to the web site instead of talking with a real person. Drs. office said they were looking into seeing if insurance would at least cover administration costs if we paid for the drug itself, but apparently the CPT codes they used are not covered by Aetna. Not sure what the next step is. They talked about doing a mock up claim and seeing what the result/rejection code was. That might get us something to take to our HR. I'm not hopeful. We could probably swing one IVIG, cost wise, but not more. After all these years, I am so tired of just treating symptoms and infections as they pop up. I keep thinking about "what happens with the next infection", as it appears strep was the original antecedent but not the current problem. I was just feeling like maybe the IVIG would solve that problem. Even if we can get him stable with other meds, I've seen too much to know that it's only the next mysterious illness to send this down the tubes again.....

 

 

If you do the IVIG are you expecting to have a second one? Maybe one IVIG will bring you enough relief and years to save up in case you ever did need a second? Thats what our thinking is here- we are doing this one paying upfront for it, but are setting up an ivig savings acct ( lol) for a just in case, so we never have to worry about how we are going to pay for it again. Hopefully by that time, insurance companies will be on board or there just won't be a second one ever needed. I hate how insurance companies rule over what doctors say ) :

[dcmom]

wornout-

 

So sorry. We just went through all of that bull#@%$.

 

We have Aetna also- I can't even say their name without my head wanting to pop off. The whole experience has changed me from a calm trusting person- to one who gets heated (regarding health and insurance issues) very quickly. We did eventually have success in getting Aetna to approve plasma pheresis for pandas- the code is post infectious encephelitis. But they jerked us around, and we finally went in as self pay, and prepaid $26k (thanks, Dad). After the fact, they have approved - but the negotiated rate (since it is an in network hospital) is about $6k. So we now have to hope the hospital refunds us 20K- that should be fun.

 

So- I advise you to continue fighting really hard. My doctor wrote a note that they were jeopardizing my daughter's health by delaying the procedure. We also got some help from dh's company- they put pressure on Aetna from their end.

 

The thing that made me the angriest, is that I could never get a decision maker on the phone. In fact, I just gave someone a piece of my mind at Aetna this week. It is horrible enough having a sick child, and then not being able to get the healthcare they need, but for them not to give you the courtesy of letting you have a conversation with anyone who has anything to do with the decision making process- makes it all too much to bear.

 

I have a lot of nasty letters that I am planning on writing- we'll see.

 

Don't stop fighting with the insurance company- just for the principal of the thing.

 

I know your pain. Your son will get better.