jmiullo

Moderately autistic 13 year old has been battling PANS/PANDAS for 2 years (if not earlier now that i look back at his behaviors). working with an integrative/functional PA in FL but thinking we need someone who is an immunologist/MD but not someone who will just prescribe Antibiotics, IVIG and not consider alternative medicines. Each time my son takes antibiotics, he gets better once the whole round of antibiotics is completed,where he is super laid back, sleeps well,very calm, no OCD and much reduced tics to a point where i wonder if he's just lethargic and spaced out. But this clam lasts but within a week, behavior slowly starts to become unstable and we're back down the road of self injury,rages,sleep disturbances, and his Tics and OCD progressively gets worse too. .......last month alone he's had two seizures (2 to 3 minute ones each time). I have no idea what next to do, think or even plan......Any feedback and suggestions will be much appreciated.

maybaby, How has Dr. DeMio worked out for your family? We live in FL and i suspect my ASD 13 year old who has been treated with antibiotics for past 2 years for PANS/PANDAS has Lyme and I am working to figure out who might be a good MD (that is also open to alternative treatments) to see. It's like finding a needle in a haystack. Your feedback on Dr. D or anyone else you may have seen or heard of, is much appreciated.

I have a 14 year old son who has been struggling with PANS/PANDAS for 2 years now. Too many rounds of antibiotics and marginal effect each additional time he takes a round of them. I suspect he might have Lyme as Mycoplasma keeps showing up. We live in Tallahassee FL and I am looking ideally to see an MD that is open to alternative treatments. Can someone share recommendations, any please. Even if it isn’t an MD and not in FL?

Ssonheim, did you find Dr. Toufexis's expertise, treatment plan and approach very helpful towards recovering your child from PANS?

Have called for an appointment with Dr. Tanya Murphy over at USF but intake person advised it will take up to 2 weeks before I will get an answer on whether Dr. Murphy will even take on my son as a patient. The initial consult can also cost $1,000 to $1,500. I've read in a Dec2014 thread on this forum about Dr. Murphy not treating PANDAS patients directly much and concentrating on research instead. That a Dr. Megan Toufexis, also at USF is who is consistently working with PANDAS patients. I think my son is suffering from PANS as he has not tested positive for strep when he "fell off the cliff" in Nov of 2015 and started for the first time having tics, daily sleep difficulties and much more anxiety in general. Looking back at his historical difficulties he may have been suffering all along since age 7 years - PANDAS/PANS - as we only became aware of the PANS/PANDAS condition 2 years ago but did not then connect the dots....... We haven't slept a full night of sleep since middle of November and desperately need help. Can anyone tell me anything about Dr. Murphy and Dr Toufaxis - good, bad or indifferent? We are hoping if Dr. Toufaxis is good with PANS/PANDAS, we will go see her instead as she is covered by insurance and I am guessing she is going to be able to see my son sooner. I notice that both doctors don't work in the same department but that may not mean anything..... And if not USF, PANS/PANDAS specialist recommendations? We live in Tallahassee, Florida but will consider travelling for the right Dr. Thank you for any advice or comments anyone can provide.