Misskbrady

Thank you for this info, GAmom. I appreciate it!

Hi guys, My kiddo was diagnosed with PANDAS in 2015. We have tried various treatments- so more effective than others- but we are still struggling. We are in Texas but are willing to go wherever to find the right doctor. I am wondering if any of you have met with either Dr. Tanya Murphy or Dr. Elizabeth Latimer, and if so, what you thought. Appreciate your feedback! Kathleen

Yes, they did cover it.

Thank you so much for this feedback. I am also looking at doctors in Houston. All the info you sent on Dr. Rao is great. I have BCBS and would need to use my insurance, so that would be a problem for me. My son's rheumatologist was concerned about extended use of antibiotics both as a gut issue and potential issues with antibiotic resistance. But perhaps I should advocate to put him back on them. What antibiotic is you son on and what dosage? We've had the most luck with cedifnir. Thanks! And if you ever want to reach me, my email is misskbrady@gmail.com.

Hello, My almost 6 year old son was diagnosed with PANDAS in October. His condition was triggered by strep. Our treatment protocol has included extended use of antibiotics (helpful), naproxen/ibuprofen (not helpful), and three courses of IVIG infusion therapy (helpful, but only temporarily). We are working with a rheumatologist and neurologist in Austin, TX. We have also been doing CBT with a therapist since October. My son continues to have issues and I am wondering if you anyone can provide any guidance as to what our next step should be. Every time he gets strep (and he gets it even while on low-dose preventative antibiotics!), he has a huge flare up of his OCD/tics. And his handwriting and executive function are getting worse. We have not seen a PANDAS "specialist" but rather are working with doctors here who know of the condition and have treated patients with it. They seem to be somewhat in the dark, however. I saw on the Pandas Network website that there are two doctors listed who parents recommend--Dr. Sesgagiri Rao and Dr. Shreenath Doctor. Does anyone have experience working with these docs? Good or bad? Also, for those of you who have gone the IVIG route, how long did it take to see improvement? We see some improvement post-treatment but it never lasts. Please respond if you can. THANK YOU! Kathleen Austin, Texas

We are considering IVIG as a treatment for our son's PANDAS. He has not responded to multiple rounds of antibiotics. My dr believes that insurance will not cover this. Has anyone gotten their insurance company to cover this treatment? We have BCBS. Any feedback would be appreciated!