Dr. owen or Texas Childrens
Posted 22 April 2012 - 08:23 AM
I also was wondering if anyone has recently seen anyone at Texas Children's in Houston. I saw older posts that found little help there, but would like to know if any one has any recent experience with them (hoping they have started to treat PANDAs).
Posted 24 April 2012 - 11:49 AM
DD (AKA Kiddo ) Born 2002. Dxs-PANDAS, Hypogammaglobulinemia, EBV, HHV-6, High Coxsackie b4, b6, A7, A9, A16, A24; Arnold Chiari Malformation 1, Arachnoid Cyst, Syrigiomylia, Autism, Bi-lateral Strabismus, and Torticollis. Retrospectively, she has likely had PANS since 4-5 yrs old. Very successful T & A 02-2013--cultured actinomyces bacteria.
Started Stephen Buhner's herbal antiviral protocol for EBV on 05-05-2014. Herxed off and on for a month while we got up to full dosages. Stable now, so we will wait and see how much this protocol helps her in the long run. I am expecting a trial of 4-6 months and full therapy to be about year, with years of immune modulation after viruses are under control.
Posted 02 October 2012 - 04:40 PM
But- in the same conversation, he said the HEAD of TExas Childrens neurology doesn't believe PANDAS exists. Soooo- I'm a bit lost. I don't want to go to a doctor that is 100% for or against PANDAS. I just want a good diagnosis for my son. Dr. Stocco is fairly young, so I'm hoping that she isn't the HEAD of the dept. and that she is more open to PANDAS. I'm also hoping my pedi wouldn't refer me to someone knowing they didn't believe in it. We shall see. I will update how it went at TCH as soon as we have our appt.
Posted 03 October 2012 - 08:58 AM
Our neurologist was initially "on the fence" - believed it existed, but that no other treatment than the standard treatments for OCD/tourettes should be used, and if there were no elevated strep titers - there could be no PANDAS (my son has never had an elevated titre - even with positive cultures!). He took one look at our detailed logs and told us flat out that even though the bloodwork didn't fit - we were ABSOLUTELY dealing with PANDAS, and based on our logs, he couldn't deny that the abx treatment had a significant effect.
It helped us immensely early in our journey when we were trying to find local doctors to help.
Mom of an exceptional 6 y/o son and 8 y/o daughter - BOTH with PANDAS.
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