For the adults with PANDAS /PANS....

[BeenThere]

@maryangela

Thanks so much! We just completed round two of HD IVIG .  We did not get any response from first round - also nothing worse.  Hoping for something on second.  We have cleared more co-infections (per Igenix, Quest and Labcorp) but it seems like something always pops up, even though DS is not symptomatic for anything.  He was low positive, then negative, now again low positive for Mycoplasma IGM but has never been sick, had fever, nothing.  He finally killed off Babesia duncani and bartonella - but is now "indeterminate" for TB relapsing fever.  Honestly I'm not even sure I believe these tests anymore.  How can this stuff come out of nowhere with no known exposure?  DS (23) barely leaves the house and if he sees a child he runs to avoid them and their germs.  How is your son doing - still continuing with the monthly HD IVIG? 

How many IVIGs did you have before seeing any response?  Has the anxiety abated at all along with the OCD and tics?

I have only heard "encephalitis protocol" referred to in relation to the Duke University program.  Is there a recognized and accepted protocol associated with Autoimmune encephalitis?  I have not seen that despite searching studies and treatment guidelines.  Do you have a reference that points to that?  It would be helpful when petitioning insurance to re-consider covering.  We have UHC and their guidelines do not specifically exclude or include IVIG for AE.  If there is a conclusive study we could provide it would help. Our doctor has refused to do a peer-to-peer as she says she has done many over the years and the only time she has seen IVIG covered by insurance is when the parents actually file a lawsuit.  Twice she has seen that and the insurance company has settled out of court for cost of care in order to avoid a precedent.  Wish I was an attorney.

[MaryAngela]

@beenthere

Our DS’s MD also said the peer-to-peer was useless.  The call was actually initiated by the insurance co. when they were reviewing the appeal.  I paid the MD $250 for the call.  It was from that call where MD called this encephalitis protocol. Not sure if that was his term or the physician from insurance co.  I did look it up, and remember seeing monthly IVIG for up to 18 months.  DS14 is in a bit of a flare right now. He had a sinus infection and tested positive for Mycoplasma Pneumonia.  Took abx for 3 weeks.  Some OCD symptoms returned, but this is nothing compared to what we dealt with in the past.  I also realized the Briova Rx was not adjusting DS dose with his weight changes. They always asked his current weight, so I stupidly assumed they adjusted it.  Will be adjusted for next infusion in 2 weeks.  This is the last IVIG that is approved for now. 

We saw improvements right away when he started weekly LD IVIG about a year ago, but after a couple, he would get worse after each infusion and take a few days to start improving...then he’d have another infusion, and regress. I did not like the weekly schedule.  Once he started monthly protocol, we saw improvement after first treatment, and dramatic improvement after the second treatment (within days). Not sure if having the 12 (I think) weekly infusions prior to starting monthly impacted the success of the monthly infusions.