Please take 2 min. to help all of our kids

[minimaxwell]

 

Another PANDAS mom posted this in the PRN group. I totatly agree with her idea, for us to flood them with comments & info in hopes of getting them to include PANS in their publication! The APA's(American Psychiatric Assoc.) book is like the Bible for psychiatrists!! (I know because I have a few in our famil) This is what they turn to for help with diagnosis. There is NO info about PANS/PANDAS. Not even a mentions about the White paper or Nimh's updated info on the condition. Currently they are open to public comments for revisions.. All you need to do is become a memember(it's free) & then you can leave a comment. If we could get mentioned in this publication... it would definately change the way the mental health field views this condition!!

 

"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 Susan 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."

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

• • Tiffani Weinberger Maxwell This is what I submitted. I hope you don't mind that I used some of yours,it was so well written.My daughter went undiagnosed PANS for 11 years by some of the top Dr.'s in the Boston area. We had diagnoses of OCD/Anxiety/Mood Disorder/Panic Disorder. Her triggers are Strep and MycoP. I am happy to report we have our daughter back after lVlG Treatment.
    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 Susan Swedo and her studies?? Please help these children!!! Why not mention this possibility to your psychiatric community? Maybe if you had printed something that they had read, they would have had a better idea that PANDAS/PANS was a possibility. Please open your minds so that you can help the minds of suffering young people.
    My daughter's issues LOOKED psychological, but it was due to a physical condition that needed to be treated. 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.r. Rosario Trifilletti and Dr. Kovasevic are doing great work and helping many kids,including my own.

[ptcgirl]

Just did it! Thanks for posting!

[colleenrn]

Just posted comment. Thanks for finding that!

Colleen