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tantrums

Has anyone gone to the Yale Child Study Center?

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I am anxiously awaiting my sons Cunningham test before I decide my next move. But I'm thinking the CHOP doctors suggestion of the Yale Child Study Center may be our best bet. UMDNJ was a total waste of time - as predicted. The doctor actually said to me "I don't treat PANDAS" and cancelled the appointment. To make it even worse, she went out and reemed the staff for scheduling a PANDAS patient. She suggested I go to Mayo in Florida. May as well go to Yale if I'm going to travel - I can actually get there in a days drive.

 

But wondering if anyone else has gone to them? I'm concerned most about follow up. They indicate on their website that they do a lot of follow up.

 

Driving with my DS in the car is NOT something I enjoy at the moment :( Although... those steamed cheeseburgers in Meridin - YUM!

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Where are you located.

 

I know LaurenJohnsonsMom saw Dr. Leckman at Yale, so you might pm her.

 

Also, I vaguely remember someone else (earlier) going to Dr. Leckman and he ended up referring them to Dr. B.

 

I suppose it also wouldn't hurt to contact Dr. Leckman himself. But, I would definitely talk to Lauren's mom as well.

Edited by EAMom

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We're in Eastern PA (lehigh valley). It's about a 4-5 hour drive depending on traffic and I'm not sure exactly where it is, just a vague idea as we go to Maine frequently.

 

I do believe it was Leckman that the CHOP doctor recommended. I was going to contact them first anyway and explain the situation. Tired of wasting time and effort, not to mention money... They don't say PANDAS on their website anywhere.

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Yup, it wouldn't hurt to call Dr. Leckman.

 

I'm betting the Cunningham test will be PANDAS (although too bad it was after steroids).

 

What about Dr. Latimer?

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We waited 8 weeks after the steroids to be safe. She had advised us to wait at least 6 when we first contacted her.

 

My insurance says absolutely NO WAY IN ###### to IVIG so I don't know if Dr. B or L would be of much help at this point. Dr. T has been working the abx with us, but after 4 of them with little progress (except they do minimize tics), I'm just frustrated and honestly AM questioning the TS diagnosis. Hoping with all hope the Cunningham test will clear that up.

 

What I'm most concerned about is the test showing he has both, which it feels like to me and what CHOP rheum. said. Since steroids made him so much worse and ABX only help minimally, it would seem that the two work against each other :(

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I suppose it also wouldn't hurt to contact Dr. Leckman himself. But, I would definitely talk to Lauren's mom as well.

 

 

i do not know how dr. Leckman treats. . . but i did meet him at the OCD conference, spoke with him and later e-mailed him. i was so very impressed with him and his compassion for pandas kids and their parents. he was very responsive by e-mail. i would definitely suggest contacting him, saying you were referred to him and asking for his suggestions.

 

please keep us posted if you do.

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I thought Dr. Leckman didn't see patients? I thought I read that on the board here one time.

 

I use Dr. Leckman. PM me (or my mother, Kay, if you want a parent's perspective). I've so far had a very good experience with him.

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