Re: PANDAS VIDEO FROM THE TODAY SHOW

[Guest guest]

Thanks Beth!

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[Guest guest]

I noticed in the video that the boy was treated with atibiotics, and this was a

year into his OCD symptoms. I thought that atibiotics didn't work unless it was

immediately after syptoms appear.

Also, does anyone know of a docor in the Austin area (or we can drive to

Houston, San or Dallas if needed) who treats PANDAS kids. I'm convinced

my child has it. He acts just like the boy in the video and his came on

overnight. He also has a history of tics. I asked his psychiatrist and he

refuses to give the steriod, telling me to ask his pediatrician. Now I'm

thinking I need to go to someone familiar with PANDAS, rather than expend energy

trying to educate as I did with psychiatrist, only to be told to knock on

another door. Thanks!

Anita in Austin

[Guest guest]

Antibiotics worked for our child, and we were about 6 months in, on a 3rd

episode. However, we were also doing intensive ERP - I think that is the right

combo. It was like the antibiotics calmed her mind, but the compulsive behavior

was still a habit - like her mind had learned OCD. She was doing very well

before the antibiotics - able to function through ERP. However, afterwards, the

gains were like a runaway train. An exposure that would have taken 1-2 weeks to

break down, was only a day or 2.

Here is a recommendation from another site for an ERP therapist - not sure how

close this is to you, but she is rumored to be good, and you will want one on

your team:

Kathleen Norris, MA, LPC

Answers for Anxiety Counseling

2600 Tibbets Drive- Suite C

Bedford, TX 76022 US

Phone: (817)237-9889

Fax:

Email: kathleen-norris@...

I only know of 2 doctors that really specialize in PANDAS - one in Chicago, the

other in Baltimore. Let me know if you need contact info. They do phone

consults, I believe, and will work with a local doctor if you have one willing

to learn. We have had the best luck with a Neurologist, but many parents use a

pediatrician. You may also want to ask for a referral on the Latitudes forum for

PANDAS.

in NC

>

> I noticed in the video that the boy was treated with atibiotics, and this was

a year into his OCD symptoms. I thought that atibiotics didn't work unless it

was immediately after syptoms appear.

>

> Also, does anyone know of a docor in the Austin area (or we can drive to

Houston, San or Dallas if needed) who treats PANDAS kids. I'm convinced

my child has it. He acts just like the boy in the video and his came on

overnight. He also has a history of tics. I asked his psychiatrist and he

refuses to give the steriod, telling me to ask his pediatrician. Now I'm

thinking I need to go to someone familiar with PANDAS, rather than expend energy

trying to educate as I did with psychiatrist, only to be told to knock on

another door. Thanks!

>

> Anita in Austin

>

[Guest guest]

Antibiotics can help anytime strep is active. My son had recurring strep

infections and every time he came off of antibiotics, his symptoms would come

back. The strep had colonized in his adenoids. So after a few positive strep

cultures, they eventually started coming back negative because the swabs don't

go near the adenoids. So he was sick nearly constantly for a year.

Long term antibiotics do 2 things - they fight resistant strep and they prevent

new infections. It's the protocol treatment for rheumatic fever, a similar

disease.

I sent you an email with more specific information.

>

> I noticed in the video that the boy was treated with atibiotics, and this was

a year into his OCD symptoms. I thought that atibiotics didn't work unless it

was immediately after syptoms appear.

>

[Guest guest]

He is a pediatrician - Dr. K (don't know how to spell) - go to

www.webpediatrics.com and you can email him to ask questions. Check the link

" PANDAS Clinical Cases " & you can see the signs of PANDAS as well. I hope you

never need to use it!!! . in NC.

>

> Hi ,

> Who is the PANDAS specialist in Chicago that you know of? At this point my

> daughter is doing quite well but it is good to have this name just in case,

> and we live outside of Chicago.

>

>

>

[Guest guest]

Anita,

We're also in Austin and have had good luck with therapy at the Austin

Center for the Treatment of OCD (http://www.austinocd.com/

welcome.html) . Our Psychiatrist is Masi and we've been

very happy with him as well. Dr. Masi is at 452-2929. If Dr. Masi

doesn't work out for you I'm sure Austin OCD can give you more

suggestions.

How old is your son? My daughter is 9 and we've been trying to find

kids about her age in Austin that have OCD for her to spend time with.

We went to the OCF conference in Minneapolis this summer and it was

great how just spending time with other kids going through the same

issues was so helpful for all of them.

Best,

Katy