New here: looking 4 NC pediatrician or immunologist (PANDAS)

[bdt]

Hello, I just joined and am the father of a 9 year old boy who has been diagnosed with PANDAS. He was part of Dr. Swedo's NIH study.

He received IVIG as a result of the study, but 6 months later, he is still not showing improvements. The only antibiotic he has been on is Penicillin.

As great as the NIH team was, they are set on Penicillin and would not prescribe a different antibiotic. We have tried natural therapies and have yet to find an effective one.

The only doctor (peditrician) we have seen, since returning from the study, wants to puch SSRI's on him.

Our gut tells us that is not the answer. We are hoping to find a doctor that will at least let us try a different antibiotic(s),

I have found studies that although Penicillin is a good anti-biotic to start with, however, it is ineffective in a percentage of PANDAS patients.

He has become agoraphobic and it is hard for us to get him to travel anywhere, much less long distance, without him freaking out/panic attack.

This is a boy who was totally normal until 8 years old, when his behavior changed (OCD, anxiety, multiple tics).

We took him to the doctor and they couldn't find any reason for the symptons, except to say psychological. We mentioned PANDAS and requested a strep test, but were refused.

Finally after a second visit and persisting on a strep test, the doctor reluctantly did a rapid, and guess what??? it came back positive!

Wish we could have addressed that the weeks earlier when we were there...

We live in Garner, NC (just outside of Raleigh)...so any information, suggestions or referrals would be greatly appreciated!

Sincerely - Bdt

[nicklemama]

I sent you a PM. Look up at the top right hand corner to access private messages. I think trying a different antibiotic is a good next step.

[PowPow]

If your child is severely affected, you may want to consider the neuroimmunology clinic at Duke.

Dr Swedo spoke there, at an Autoimmune Encephalitis conference a few weeks ago.

Check out Aealliance. Org and see if the descriptions fit.

We travel to durham (4 hours) a few times a month. Excellent care!

[MMC]

Hello bdt, I am one of the few dads on this forum and am in your area. We are North of Raleigh. Just like powpow, we also see the docs at the neuroimmunology clinic at Duke. Two great doctors there. We have also seen Dr Latimer in Bethesda, MD (among other doctors), been at this over 5 years. She actually referred us to Duke after she ran out of things to try. I am going to PM you my contact information...top right corner messenger icon.