PANS/PANDAS Clinical Trial

[tpotter]

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

 

 

Both my children have had both PEX and IVIG. Personally, I vote for PEX for several reasons: 1) it works faster 2) you're not infusing blood products. But, the down side is that it is almost impossible to find anyone willing to do PEX (that's why we eventually had to switch to IVIG.) But, the IVIG certainly has helped, too (along with a lot of other things that we do, including continued abx, supplements, chiropractrics, homeopathy, and acupuncture for us.) If the NIMH would officially clarify that PEX is appropriate for the tx of PANS, I know of at least one other doctor who said he would do it. Unfortunately, though, it's very difficult to get the doctors to approve (let alone insurance!)

[BoyIowa]

Can you tell me where you had PEX done? Our ds doctor seemed willing to order it, but I know he is not an expert. Do you think it would be effective for Lyme too?