Looking for a Pandas aware Immunologist and Infectious Disease doctor in the Atlanta area

[Mom23boys]

My two boys were diagnosed with PANDAS a couple of weeks ago by Dr. Latimer. A little background. . . My oldest is 14 and my youngest just turned 10. My middle child missed this genetic lottery apparently. Both boys by all accounts are mild - tics mainly, with chorea (oldest), mild OCD (mostly oldest) and anxiety (mostly youngest). No problems in school, academically or socially, no behavior problems, etc. We have been told by every doctor we have seen - childhood tics. However, we have a family history of PANDAS, SC, scarlet fever, and post-strepococchil glomerulonephritis. Still - my oldest tics a lot, has mild chorea and is a teenager. He also has developed mild OCD - has to wash hands after eating is the main symptom. Youngest worries a lot - not debilitating - but we have gone through periods of fear of choking on steak/chicken, constant need to urinate (thankfully that passed quickly), etc. Youngest exhibits problems/worries (when he has them) at home/night. Latimer thought clearly PANDAS. We are on Bicillin shots for 3 month and my oldest is on a short course of Augmentin for a sinus infection. No changes yet after a week of Bicillin and a few days of Augmentin.

 

I want to get a team together to handle this as locally as possible, given that I am dealing with 2 kids, Latimer does not take insurance and it is a very expensive plane ticket x3 to DC. My sister (a physician) has 3 kids with PANDAS and she suggested I find a local infectious disease doctor and immunologist if possible. You would think being an hour outside Atlanta it wouldn't be difficult but after reading these boards, it doesn't seem like there are any in Atlanta? My sister seems to think an immunological workup is appropriate for both of them (2 of her kids needed IVIG and both were immunodeficient) and if we could go to a doctor that takes insurance, that would be great. It seems like many of the PANDAS doctors have moved to cash only, which mounts up when you are multiplying it times two and adding in a plane ticket or three!

It all seems so crazy to me, particularly since my oldest basically has SC which runs in my family and PANDAS seems like it is a variant of that. Unfortunately, I have gotten a little eye rolling from doctors so I am a bit wary.

 

Any leads on Georgia (Atlanta area preferably) infectious disease doctors or immunologists that believe that PANDAS is a real disease and are familiar with it/willing to treat it?

[Mom23boys]

Bumping to see if anyone has an answer

[WorriedDADNMOM]

I am not sure of any docs you are requesting.

 

Here is a list you can review.

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/#leading

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/#GEORGIA

 

Additionally, your on here to help your kiddos.....I have 3. Yes it has been expensive. You will hit roadblocks on alternative stuff. Main stream will just want to do SSRI,CBT, anti-psychotics, and more main stream stuff. You may find one's that will do ABX, Steroids, or other immune modulating stuff.

 

We went the natural integrative pedi route with long term ABX and all natural supplements. Yes, x3 is very costly, but I refused to do the SSRI thing and spin our wheels with main stream medicine....spending tons of money and NOT getting anywhere. We wasted almost a year on 2 pedis and and ID doc.....they wanted immunologist, therapist, neurologist.........We did not have time to waste any longer.

 

3-3.5 years post integrative pandas leading doc.....we are very happy with the results.

 

Let me know if you need or want any other info......would be glad to help.

[Mom23boys]

We have made some progress since the original post. Both boys were on Bicillin shots for 3 months and both had their tonsils out on Wednesday. The older, with full chorea, had zero tics for 12 hours. This is unheard of - he tics with facial grimacing multiple times an hour. Not sure if it is the surgery or the steroids given during surgery, but either way I am hopeful. Dr. Latimer explained that if steroids help, it shows us that the tics are autoimmune in nature (i.e. PANDAS vs a tic disorder). Also, response to steroids is a great indicator of whether IVIG will work.

 

The younger's tics were way down before the T and A and I have noticed a couple from him (eye blinking forcefully occasionally).

 

I refuse to give SSRIs, etc. and their OCD/anxiety is so mild I doubt anyone would prescribe them anyway. OCD consists solely of older needing to wash hands after he eats. Younger has no OCD but mild anxiety, which waxes and wanes. Their primary symptom is tics, which Dr. Latimer diagnosed as caused by autoimmune encephalitis.

 

I am interested in any integrative approaches or supplements as an adjunct to traditional medical therapy, realizing that the only symptom that really needs addressing is tics. Any immune modulating supplements would be particularly helpful.

 

Because the tics seemed to respond so strongly to steroids, IVIG may be a possibility for the older one down the road. I don't think the younger has enough symptoms to qualify right now.

[Mom23boys]

And to elaborate, when I say their main symptom is tics, we have had no issues with school, behavior, socially, etc. Grades still high and school reports, including behavior, still excellent. No rages, tantrums, oppositional behavior, etc. Basically two normal kids with tics that came out of the blue after a strep infection.