Daughter has emergent condition- I suspect PANS and NEED HELP

[BeeRae22]

What did rapid strep test show? Start ABX immediately, you have nothing to lose, and much to gain. Dr. Kovorsevic, out of Hinsdale IL, will do a phone consult and treat over the phone immediately. He has treated my ds and has been wonderful. He goes back to the trenches of when Pandas was first hypothesized and he knows a lot. Go to Webpediatricsmd.com If you email him, he should respond immediately. When did she start the therapist? All of this is new in the past 21/2 months? with sudden onset You will have to demonstrate an active infection to correlate to a Pandas diagnosis, or an infection that occurred in the last 12 weeks if I remember correctly. Either or, I wish you the best of luck.....

I did look on the webpediatrics site and am interested in emailing,,, what is the cost associated with "treating over the phone"? I'm not sure I trust any of the forementioned "phone consults" for hundreds of dollars. Sounds like people have done it and then not been able to contact the provider again after that. I would be very interested in getting antibiotics sooner than later, I agree that there is much to gain and not much to lose by trying. Should I seek out another pediatrician? DD meets all of the criteria listed on that site. I am 99% certain she has PANDAS or PANS. I wish we didn't have to wait 2 weeks for an antibiotic. Maybe I should start calling around to see if I can find a ped willing to start her on something now???

[3bmom]

I would call around. I have also had luck with Urgent Care since I didn't have a PANDAS Dr. For years after initial diagnosis. Our son at 11 lost 30lbs with food issues too. Have them check for HHV-6 also. He started eating within 36 hours of an antiviral. When we added the antibiotic within a week he would " forget" to exercise. That's after 5 hours a day at the gym.

 

Some of the blood work should be quicker than 2 weeks. Hang in there!