anyone used pedi. neurologist Dr. Stocco at Texas children's hosp.

[tylermom]

my ds age 4 has an appt. in july with dr. stocco. i'm just wondering if any of you have used this dr. or heard of her??? she is a pediatric neuro. that specializes in movement disorders such as TS and cerebral palsy. i'm just curious if she believes in PANDAS. let me know if any of you have used her for your dc?

[saidie10]

my ds age 4 has an appt. in july with dr. stocco. i'm just wondering if any of you have used this dr. or heard of her??? she is a pediatric neuro. that specializes in movement disorders such as TS and cerebral palsy. i'm just curious if she believes in PANDAS. let me know if any of you have used her for your dc?

 

I am afraid you may run into "evidence based medicine" treatments only with her. I am not 100% but highly likely. I was trying to get in to see Dr. Chinen (a Pedi Immunologist at TX Childrens) and he told me his hands were tied since the NIMH and the American Pediatrics Association only discuss treating the symptoms of PANDAS as opposed to treating the root of the problem because it is still in research trials and clinical studies, yada yada.

 

So, I just got off a half hour phone call with the nurse of the Pedi Neuroglost i was bringing them to see next week and turns out he feels the same way.

 

Call Dr. Stocco's office and tell them you suspect PANDAS. Ask the nurse to find out what the Neurologists general treatment protocol is if PANDAS is suspected. This is what I did this morning and that led me to the conversation with the nurse a moment ago. I just don't want to waste any time as I am sure you don't either!

 

Good luck!

[trggirl]

We saw her. She will not give antibiotics.

Edited May 17, 2010 by Trg girl

[tylermom]

so if she doesn't give abx i'm guessing she doesn't believe in PANDAS. this is so frustrating i feel like i'm hitting a brick wall constantly with this. my pedi doesn't believe in PANDAS. now he hasn't come out and said this to me but i can tell he doesn't. when i told him about how my 4 yr. old had started having tics, ocd and behavior issues, mainly severe tantrums like my oldest ds who was dx with TS at 18 months old. the pedi said he's sure my 4 y/o ds has TS just like my 10 yr. old. then he said he didn't recall my 4 y/o having strep within the last yr so how could it be PANDAS if he had not tested pos. for strep. so last month my 4 y/o did get strep and i talked to him about it again and he said the abx that i'm putting him on will make any PANDAS symptoms go away. during the 2 days that my ds was having high fevers his PANDAS symptoms were gone. 2 days after being on abx his symptoms came back with vengeance, tics, ocd, horrible tantrums. that happened for about 2 days then i guess once the abx started really working we had about 2 wonderful weeks. the abx was only a 10 supply. so now a month and a half later we're still dealing with symptoms on and off. i'm so sick of this and so sick of hearing how dr.'s don't believe in this. i'd like for some of these dr.'s to have their dc acting like this after a strep infections and see if maybe more of them would believe in PANDAS. also, when i told the pedi about my oldest ds being dx with TS at 18 months old he even said that was the youngest child he's ever heard of being dx with TS. so i told him that is what has led me to research toddlers being dx with TS for the last 8 1/2 years. i told him even the dr.'s that dx'd him said it was one of their youngest cases of TS. these were some of the best pedi neuro's in the state of TX who dx him. of course this was back in 2001 when PANDAS was just starting to be researched. even though pedi knows that our oldest was dx so young and how unusual that is he still said he feels like our 4 y/o has TS also because his older brother has it. he would even discuss PANDAS. so frustrating.

[H Mom]

I have looked for a Dr. in Houston that can treat Pandas with no success. It is sad that a city with a top notch medical center is closed minded. We are using Dr. K. We feel that the health and well-being of our children is at stake and they should be treated by the experts. It is extremely frustrating and I am hopeful that the medical community will understand and recognize this disease in the near future.