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More children with PANS/PANDAS IN STL

We had our first St. Louis support group meeting in St. Louis on February 15. Nine children with PANDAS/PANS were represented. There are 3 more whose families were unable to attend. Fox news came and did interviews with a 15 year old who had IVIG over a year ago and they did a little feature on Joshua as well. What a group of educated parents. It was nice to meet Robby, who has made it through the ordeal successfully.

It was evident that in our area, most physicians grossly lack the knowledge to effectively treat this population. This is also evident from the letter sent to one of our parents from the NIMH stating there are no Missouri physicians they recommend to manage children with PANDAS/PANS.

After the segment aired on Fox 2 news, the reporter e-mailed me to say they had several calls from families who have confirmed diagnoses and have had treatment….outside of Missouri. I think our total number of confirmed/treated cases is over 20, with another handful in the process of getting help….outside of Missouri. There were a couple of calls from parents inquiring as they felt their children exhibited the symptoms. They were referred to a number of physicians….outside of Missouri.

There was also a news article released Thursday morning telling our story and giving a more thorough explanation of symptoms of PANDAS/PANS. It was well written and the reporter went to the trouble of attending the support group meeting to get an even clearer picture of what we were going through. She also asked questions of a local physician who provides IVIG and the Chicago specialist who many of us see. One of the participants at the meeting said the article was handed out to teachers at her child’s school. This is raising awareness!

I received a phone call from the National PANDAS organization in California applauding our efforts to raise awareness as this is the most challenging area of the country to get help for children with PANDAS/PANS. I told her we were not done and to stay tuned.

If you don’t know, the medical white paper for PANDAS/PANS was released Wednesday night after our meeting. This was another confirmation/sign to keep going. This paper gives the diagnosis much more credibility and is helpful for physicians in diagnosing the disorder. You can find it here on the page.

For more information and a personal story, check out our book, Joshuas Missing Peace. It should also be available on e-readers within a couple of weeks.

 

 

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