This may be dicey to ask, but. was there someone

[rockytop]

I seem to remember someone who posted many months ago that a very well known and wonderful PANDAS doc felt that their child did NOT have PANDAS. I am not trying to open wounds, and I apologize in advance, if I am. If that was the case for you- would you please contact me privately? I need some information for a friend. Thanks so much.

[Chemar]

Not sure if you mean me? as I have posted that here a number of times

 

My son was evaluated for PANDAS by Dr Tanya Murphy almost 10 years ago, and we were told he did not have PANDAS based on absence of any evidence of strep in his medical history as well as no evidence in titers, cultures during the 6 months he was seen at the Shands clinic when she was there. He had a number of flares in severe OCD during that time, never associated with any sign of strep.

We do have a family history of tics, TS and OCD and he may be PITANDs as he has had EBV, candida and possibly other stuff

 

I do hope no one else would be intimidated to post something like this here.

[rockytop]

Thanks Chemar--

but I think it was someone else- diff dr, I thought.

 

Weird question, I know.

Specifically, if you go to a "PANDAS doc" does everyone who presents with tics or fear end up with a diagnosis of PANDAS? maybe some just have tourettes or anxiety? I not trying to start a discussion on negative strep titers or that maybe TS is all infection or immune triggered-- just looking for this info

 

Thanks

I am not doubting my children's diagnoses (I was SOOO glad to get it:) in a weird way!!)- just trying to assure a friend that her child will not be subjected to treatments that will not help if her child just has TS

[kimballot]

I'm sending you a PM

[rockytop]

Thanks to all who repsonded. I was sent the posting link I needed.

 

we have some very efficient latitudes forum searchers here.

 

Good night!