Are we dealing w PANDAS?PLEASE HELP

[heathers_hounds]

  On 5/20/2011 at 6:31 PM, DebC said:

Another doctor to check in the DFW area is Dr. Zinser. Her is a pediatric neurologist at Dallas Children's Hospital downtown. He just successfully treated a recent diagnosis of PANDAS with IVIG. You have to be referred to him by your pediatrician and can't call directly for an appointment, though.

 

Also, I head up the Dallas Area PANDAS Support Group. We meet the 4th Monday of the month so our next meeting is this coming Monday. We meet in Frisco. Roxann heads up the Grapevine/Fort Worth Group which also meets this coming week. Please let me know if you are interested in attending and I can get the information to you. I also have a list of doctors who have been helpful in the Dallas area. The Trophy Club doctors listed above have become hesitant to do much for PANDAS as of late. Here is a list which we try to update regularly via feedback from our group parents:

 

Area Doctors Who Have Been Helpful in Treating PANDAS

 

Dr. Seshagiri Rao (immunologist): http://www.allergyandasthmatreatmentcenter.com/

 

Dr. Ashworth (pediatrician): http://www.drcarolynashworth.com/

 

Deborah Bain (pediatrician) – http://www.healthykidspediatrics.com (972) 294-0808

 

Dr. William Zinser (pediatric neurologist) -- Phone: (214) 456-2768

 

Dr. Debra Phelan (child psychologist), uses CBT – Phone: (214) 848-2686

 

Dr. Tracey Wiest, Wolverton Chiropractic – (972) 231-4231

 

Dr. Roger Skiles -- http://www.stonebriarent.com/contact.php (469) 633-9595

 

Thank you! I was just in the middle of calling around, trying to find out where to go and how to go about it. Now I feel ALOT better with the local contacts on here. Haven't heard from my pediatrician so I am assuming he is having trouble figuring it out as well. What little I am gathering, is when referral and records are sent to specialist, they review and then make appt.. This taking weeks. Is this what to expect, when we find the right place TO go?

Edited May 20, 2011 by heathers_hounds

[beeskneesmommy]

My son was DX first at 2.5 years, although I believe in retrospect that he had PANDAS starting around 14-18 months. It's just that no peds ever tested for Strep at that age, even though he presented with fever/sore throat. After he was finally DX, SEVERAL pediatricians in our area (NC) seemed to have no idea how to proceed and although they agreed that he had PANDAS, they minimized it and never treated it! They just kept throwing antibiotics for 10 days at him whenever he tested Strep +, despite my continuous quest for more in depth treatment.

 

I absolutely believe in my heart of hearts, that if they had not let us down with their ignorance and arrogance, that my son would be a healthier kid at this point, at 4.5 years old. That being said, I encourage you strongly to seek out a PANDAS SPECIALIST immediately. Pediatricians are great at what they do, but only a handful seem to have the understanding and medical knowledge necessary to diagnose & treat PANDAS. Your kiddo is young and you may be able to prevent this. A very small percentage of PANDAS patients can be treated with antibiotics alone and do not have further PANDAS symptoms. These kids are ALWAYS diagnosed and treated extremely early.

 

Best wishes!

[heathers_hounds]

so I still haven't heard from our ped. I called and gave them Dr Zinser's info hoping they will refer there. He is a ped neuro. Our ped was thinking an immunologist would be the route to go...Should he see both kinds of Dr.? Or do I just start w whoever he refers us too? What's normal protocol? Not diagnosed w PANDAS, just concerned that's what it is..but how to find out if it is something w immune system or if it could be Lyme or something else where do we go?

[heathers_hounds]

ok well talked to ped nurse...they had talked to Dr. Evans who works in same office as Dr. Zinser.. she said the that Dr Evans suggested maybe sleep study... When I talked to new patient info at Children's medical, she said Dr Zinser did not work with PANDAS..?? I told her I had a few referrals from parents w kids w PANDAS and they referred him to us. She said he works with little ones, usually under 3. Confused. Also new appts were scheduling into January. Is it really going to be that long before my child is seen. Now what? I am not clear on the sleep study.. We are not really dealing w night terrors anymore, it's leading up to sleep, when he has issues amongst other PANDAS symptoms.