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Found 8 results

  1. Hi, my insurance United Healthcare denied IVIG for my daughter recently diagnosed with Pandas. Our dr. had a peer to peer phone call with a United medical director and the denial was upheld citing IVIG as an "unproven therapy." I am appealing this further. I've done some research but want to prepare a solid and thorough rebuttal. Does anyone have advice on how to do this or do you have success stories for when these appeals worked? thank you in advance!
  2. Please help. We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23). Twelve years ago he responded beautifully to abx. This time he has not responded to abx or to one round of IVIG (no response at 8 weeks). He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300. Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections. Physically he is the picture of health. His symptoms as an adult are invisible but still debilitating - extreme social anxiety and consistent depression. We are seriously interested in plasma exchange as a next step. It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms. We would love to hear some current experience with this. Who is doing plasma exchange? Our provider said she would do it if she could; apparently its almost impossible to get in California. If insurance will not pay - how much does it cost and can one get the contract rate? Does it matter that DS has primary diagnosis of autoimmune encephalitis? I would really like to hear some recent experiences with this? Most comments I see are from 6-8 years ago. Does this mean that no one is getting plasma? It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis. We have to make a decision about next steps. DS is not getting any better. NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees. Thanks for any help.
  3. Hi folks, My son has PANS with very high Cam-KII, but no anti-strep antibodies. It's now been over 7 months now since his symptom onset, and he's no better; a brilliant HS Junior unable to attend school. We've exhausted non-IVIG medical management, so we've been recommended high-dose IVIG+prednisone. How does a doctor (or I) persuade an insurance company that this is a rational, effective treatment, when all the (few) studies are on PANDAS, which he does not have? I'd love any advice on how to file a successful application and/or appeal! And, clarification on what is my optimal role? The MDs aren't jumping up to apply to the insurance, perhaps having been refused before. How can I help the MDs write a successful letter, given that it's not easy/pleasant for MDs either. Given DS16's high Cam-KII activation levels, autoimmune encephalitis seems a completely rational Dx, though his brain MRI was essentially negative, and (a) I don't even know if the Cunningham Panel test is accepted as evidence for autoimmune encephalitis, much less if it would be sufficient for Anthem BCBS to accept the Dx, ( we don't know the specific anti-neuronal antibody that causes his Cam-KII activation, and © there's still the matter of showing that IVIG is a necessary and rational treatment, even as a 3rd line Tx. I can easily search PubMed, read the journal articles, but so far I haven't found any trials or even case series of IVIG for PANS or (nonspecific) autoimmune encephalitis. Have I missed even prospective or retrospective case series of IVIG / plasmaphresis for (nonspecific) autoimmune encephalitis. (The only studies I've found were for the potentially fatal NMDAR-encephalitis, or things like Guillain-Barre syndrome.) Still, many of you seem to have persuaded the insurance companies effectively. How? Thanks! wisdom_seeker
  4. Just caught this on our local news minutes ago: http://abc7chicago.com/news/mom-leads-fight-to-force-insurers-to-cover-pandas-treatment/1840146/ I don't know how the State could enforce this bill, should it pass, but I still take it all as good news. The march to acceptance, accessibility to treatment, and affordability of treatment continues!
  5. We recently completed an appeal for Moleculera testing for our DS, 17. The results came back that they would approve certain CPT codes, but not others. How does that work? Does that mean that insurance will pay for part of the testing, but not all? I am confused, but I know that I am at the point where I would pay for the whole thing, because I want some answers.
  6. Hi experts, I searched this forum re. getting insurance approval for IVIG and asked on an older post that was for AE; our MDs say that's out b/c it's not anti-NMDA AE, so I thought I'd try to be more specific in my question here. I'm preparing my insurance appeal in case UHC denies coverage for out-patient 2-days of IVIG, although they've expedited the review process. Questions: 1. How did those of you who had to appeal your insurance's first denial of IVIG (for hypogammaglobulinemia) approach it, eg. did you list PANS/PANDAS as a dx ?we were told by both our PANS NP/RN and ID MD that we can't b/c it's not in the DSM or clinically "accepted" yet, but now I think I can include the JCAP Studies! 2. What other evidence besides clinical history of frequent infections and long-term antibiotic use did you cite? We were also told we can't cite the Cunningham/Moleculera results b/c it's still considered an experimental, non-FDA approved, test. Thanks! Tracy
  7. Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy). Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information. Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from LP yet, I think the results will be helpful if we can identify which auto-immune disease it is. We have definitive proof of neuro-inflammation. However, I'm getting sicker and sicker, ocd and psych problems including depression are getting worse and worse. I don't have it in me to put up a fight. Insurance has denied the first appeal very quickly. Said they will only cover for: ITP and PID. We have no other path to take, literally tried everything except this, and we trust Dr. C....... We can show that I've tried everything else possible, it's been over 10 years of going to mayo, shands, surgeries, many psychiatrists, alternative therapies, you name it - I've done it.......... don't know if this will hold any weight, but I have no other options. Thanks.
  8. This, too, is slightly off-topic. But as I thought many of us could relate to Randi's plight, I would post it here in the hope that we could perhaps lend her a hand. Why do insurance companies think it is morally or ethically acceptable to deny people care for which their premiums have effectively "prepaid" and/or which are deemed medically necessary by the professional caregivers?!?! Randi's right; it is unconscionable. Thanks! https://www.change.org/petitions/patricia-hemingway-hall-approve-randi-s-blood-plasma-immunoglobulin-treatments-ivig-scig?alert_id=oQQBbzvpKt_ErIeifmAmw&utm_campaign=47969&utm_medium=email&utm_source=action_alert
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