Wrong Kind of Panda

Sure, PANDAS Denmark: I used the link LLM provided: http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2 Then I followed the prompts to register and purchase the article. Took an hour or so to work, then I had it. I had to sign a usage agreement, and although I'm allowed to share with my doctor, family, etc., I'm not sure I can just post the whole study here. Also, it's really long, and the PANDAS part is really small. Good luck, and let me know if you have trouble. Thanks!

Yes, the link works! Thanks.

Hi, I just posted in my "Standard of Care" thread that a Canadian review board ruled that PANDAS can/should be treated with IVIG, and that they came to this policy recommendation based on review of research and "consensus of expert clinical opinion." In America, insurance companies don't have any single, authoritative source to take this sort of policy from. Instead, they formulate their own, individual standard of care policies based on internal reviews of evidence to date. In my recent searches to find substantiation, I saw a trend that the different insurance companies all seem to have identical policies vis-a-vis PANDAS. I wonder if we can all help change our various insurance companies' minds about PANDAS treatments by lobbying our State Insurance Commissions/Boards; applying pressure on the companies, and generally raising our voices about this in a unified way? We need more studies, true, but I am not in a position to create these. Anyone out there know of studies in pipeline designed to make treatment recommendations? We also have our own body of experts -- Drs. T, L, K, Swedo, Cunnigham, and the numerous others listed in the providers section of this board. More and more pediatricians, immunologists, and neurologists are learning all about Pandas and how best to treat the kids they see in increasing numbers. Can we have letters of support from our doctors and post them here for us all to use as we bombard our carriers and their regulators? Are the Experts out there already working on this? I've seen Dr. T's great outline. That's the sort of thing we can use more of. Forgive the tirade. I'm just a parent with a sick kid who needs a treatment I think our insurance company should pay for. I'm not looking to reinvent the wheel here. Maybe a rock-solid case has already been built and I just haven't seen it yet. Please let me know if it has. Otherwise, any ideas about how we call all help each other with this? I believe we are all in the same boat! Thanks!

Thank you LLM!! I bought the article ($4.95) and it was great! Here's the two summary lines for PANDAS: “In the opinion of the expert panel, it is reasonable to consider IVIG among the options for treatment of PANDAS.” “Intravenous immune globulin is recommended as an option for treatment of patients with PANDAS.” The opinions are based on review of the research done to date (2006) and "consensus of expert clinical opinion." This study is basically the Canadian national health care policy for IVIG treatments for 20+ conditions, including PANDAS. It's effectively the equivalent of our insurance companies' "standard of care" policies. As we don't have national health care in the USA, our battle is to prove to each one of our insurance carriers that IVIG should be covered for PANDAS. Where is our equivalent of "consensus of expert clinical opinion?" Can Drs. T, K, L, etc. please help with this? Can we start seeing some more published studies that recommend IVIG as Standard of Care? I'm thinking the Pharmaceutical companies would have a vested interest in seeing IVIG treatments covered by insurance. Some one posted that Baxter has a finance plan for off-plan treatments. Does anyone know how to approach them? Call the switchboard? Clearly we have a long way to go before our kids are able to get the treatments they need from insurance companies. I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up. Thanks for listening!

Hi, We've heard that insurance coverage for IVIg is easier to get if standard of care can be substantiated in research papers. Can anyone out there point to studies that site IVIg as "Standard of Care?" Thanks!!