Role of Neurologist?

[GG7]

What should the role of a neurologist in regard to PANDAS?

[peglem]

I'm not sure why you're asking this- I mean are you wanting to know if you need a neurologist or what you should demand of one? PANS causes neurological symptoms, but those symptoms are not neccesarily specific to PANS. So, for starters, I think a neurologist should rule out/in other things that might be causing those symptoms. Then there's the whole treating symptoms (live w/ it) vs finding and eliminating the root cause. Ideally, the doctor would do both-improve patient comfort, while seeking a cure.

 

PANS involves so many medical specialties- immunology, neurology, psychiatry, infectious disease, and possibly lyme literacy-

Most of us look for somebody who is willing and able to treat, regardless of the specialty. I think, however, regardless of who you find to treat, it is important to rule out other causes for the neuro symptoms-

[GG7]

_{Thanks for the feedback. We saw the neurologist who said that there is not enough evidence to support PANDAS. She did rule out any other things going on. Our daughter is six and has acute onset ocd caused by strep. Her adivce was to take her to see a Psychiatrist and have her put on medication.}

[peglem]

_{Thanks for the feedback. We saw the neurologist who said that there is not enough evidence to support PANDAS. She did rule out any other things going on. Our daughter is six and has acute onset ocd caused by strep. Her adivce was to take her to see a Psychiatrist and have her put on medication.}

That's pretty typical for nonPANS neurologists. If you let us know what area you are in, somebody should be able to direct you to physicians that will help with treatment. Nice that you already have the neuro work-up, anyway!

[PowPow]

What other evidence was she looking for?

If you would like specific recommendations, maybe post where you live (state) & we can help direct you.

[911RN]

_{Thanks for the feedback. We saw the neurologist who said that there is not enough evidence to support PANDAS. She did rule out any other things going on. Our daughter is six and has acute onset ocd caused by strep. Her adivce was to take her to see a Psychiatrist and have her put on medication.}

My son sees Neurology...he is not a complete naysayer on PANDAS, however, doc is just not sure how it should be treated correctly for resolution or improvement. MD was actually not against long term management with antibiotics and had actually done this before. However, his experience has been that the effects wane after about 6 months. My son was on high dose Azithromycin daily for 90 days (prescribed by peds not neuro) which arrested his symptoms from an almost choreic state to a more normal state but then he seemed to creep back to a more normal baseline (still has some tics and OCD behavior). The Neuro was not really against this but had just had limited success in changing or turning kids around with antibiotics alone. I respect his stance and he respects mine although we often agree to disagree on "these kids." There is just not enough evidence based research on the gold standard for treatments for PANDAS for docs to give them guidelines on how to treat and prescribe. Remember, they can lose their licenses for practicing "bad", faulty or what may be deemed malpractice. This is low bar- "what a reasonably prudent peer person would do" in similar circumstance. That is why there are few docs willing to go out on a limb for this diagnosis. There's no real practice guidelines accepted across the board.