Parents ~Action needed to get Diagnostic Code for PANDAS

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THIS IS AN ACTION WE ALL CAN TAKE – getting a DIAGNOSTIC CODE for PANS/ PANDAS.

I am going to mention NIMH's paper and acceptance and encouragement of

PANS/PANDAS.

If we can push this hard and get a diagnostic code, it can change everything.

THANKS

Forward it to every PANDAS related person that you know.

Dear PANDAS Parents,

There is a new diagnostic category report being published by the American

Psychiatric Association that does not include PANDAS/PANS. They are taking

public comments now. I think we need to flood them with letters suggesting they

mention it so that doctors can know that this is a possible diagnosis.

Here is the website:

http://www.dsm5.org/Pages/Default.aspx

You will need to sign in to get an account (easy). Then when you are on the main

page, go to ABOUT DSM-5, just under header, and drag down to comments option.

My comment:

Why is there NOT any mention of PANDAS/PANS??? This is likely an epidemic in

this country, and many children are not being properly diagnosed. When an

underlying infection could be treated to alleviate the suffering of children and

young adults, many are being put onto behavioral drugs without the possibility

of some underlying infection even being explored! This is medical negligence.

Why no mention? Why no mention of the NIMH white paper by Swedo and her

studies?? Please help these children!!! Our son's life was saved by doctors who

figured out that his sudden onset behavioral issues and learning difficulties

could be helped with a tonsillectomy and antibiotics. He is back, 100%. Why not

mention this possibility to your psychiatric community? We paid some " top

specialists " THOUSANDS of dollars for them to tell us they had no idea how to

diagnose what was going on with our son. Maybe if you had printed something that

they had read, they would have had a better idea that PANDAS was a possibility.

Check it out. Please open your minds so that you can help the minds of suffering

young people.

As a mother of a PANDAS child, I am trying to get the word out that no one was

looking for the invisible, and completely ASYMPTOMATIC case of chronic strep

that was going on, and that multiple physical examinations by our son's

pediatrician, including throat inspections and swabs, had repeatedly come up

negative. So the problem LOOKED psychological, but it was due to a physical

condition that needed to be treated. When his tonsils were finally removed,

inside there was found to be lots of strep that was completely hidden and

unreachable by antibiotics. Please put the word out into your community that

there is a way some of these children can be helped, and the way to start is to

check the blood for excess strep or other infectious antibodies. The psychiatric

community must be open to the possibility that infectious diseases can lead to

mental health problems. Everyone accepts that Syphilis can do this, why not

something else? This is Rheumatic Fever of the brain. Plain and simple.