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Susan Fund said:
My son haas both autism and PANDAS. We are currently treating him with a profilactic dose of azithromycin and he has had 11 IVIG's (1.0 mg/kg) over the past year. He does get better after IVIG but the improvements only last 2 weeks and then he lapses again. I have heard that the autism/pandas population may need 18 to 20 IVIG's to get the improvements to hold? Is there any other strategies we could use to get the immune system back on track? Any thoughts as to TSO therapy or GcMAF with regards to PANDAS.
My PANDAS son found lasting remission once we found and treated an underlying zinc/B6 deficiency. This has helped his immune system immensely – far more than his one high dose IVIG.
My (maybe PANS) daughter found relief from her intrusive thoughts by treating a problem with the way her body is unable to convert folate. By slowly giving her something called methylfolate (and doing lots of CBT), her bi-polarish moods and self-loathing have faded away. The methylfolate, some tryptophan and zinc/B6 supplements have also helped her overcome some eating issues and she's finally putting on weight.
I think there are definitely other options you can pursue if you aren't seeing lasting improvements from IVIG (IMO). But look forward to Dr Jenike's reply!