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We've been at this PANDAS thing for 8 years. I have known dr T for most of these years. We have several doctors and Danny receives Ivig every 21 days and has for almost 4 years. He's 20 and is doing way way way better than 1 yr ago.

I'm going to see him ( dr t) to see if he can help move Danny along. I know there's so much info I don't understand. I know we're missing stuff. I want like all of us to be" cured".

If you can give me advice of tests or questions to ask him I would really really appreciate it.

 

Thank you

Melanie

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Melanie -- there is an a Facebook pandas group that seems to have an active Dr. T contingent, and in that group, I believe, have posted a link to all the bloodtests he does at the initial appointment. I actually have the list in my files that I can send you (as it happens, my son already had most of those tests when i discovered the file) and I can PM them to you if you need them.

GL

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It's good to hear that your son is doing better. I'm so new at this, I don't know what testing to recommend. My son had immune testing which indicated a problem with low t helper cells. They would not come out to fight infections. The Cunningham Panel was our next big clue. My son has been checked for virus and he did have results that indicated high antibodies from past infections but no active infections. My son's symptoms sky rocketed after he had the flu in 2013. So viruses, flu, and past infections do not help this strange illness. My son has been checked for lyme and co infections. I would encourage you to watch the PANS video from the AE allience. Some of the children that Standford was treating also showed up with other autoimmune antibodies in their bodies. There was a list and this caught my attention. It was towards the end of the video. Here is the link for those video's from AE.

 

https://aealliance.org/

 

.

Edited by rachel
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GL. Can you please send me that link. Please.

Thank you

Melanie

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Melanie, I know you've had a long road. Have you had him evaluated for Lyme and other infections by an LLMD? Dr T doesn't really know the ins and outs of Lyme, but there are some great docs in that area who could figure out if that is a factor that might be impeding his recovery.

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