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ALERT……PLEASE READ

This was released on FaceBook by Beth Maloney, PANDAS advocate and author. This is why education about this disorder is so important. This could be any family with a PANDAS child and it is why many of us are so fearful about talking to our doctor’s about the horrors going onin our homes before we have help. Joshua’s Missing Peace is not only about education, but it’s alternate purpose was to document Joshua’s story to help prevent this from happening should he get into trouble with strep in the future. Please pass along. It is on our facebook page as well. I was unable to transfer the picture on this blog, but it is on Faceboook

It Is with heavy heart that I inform you “a 16 year old girl”
was placed in the temporary custody of the State of Massachusetts this afternoon.

This is a picture of this girl’s parents, Carrie and Jay. They did absolutely nothing wrong. They are caring, lovely people whose daughter was diagnosed with PANDAS/PANS by two different physicians, and they diligently sought appropriate treatment for her. The Wrays were greatly comforted to know how many of you wrote me to express your shock and support to last night’s email. They have asked me to publicly share their story because they are going to need your help to get their daughter back.

There is now a gag order on the case preventing the use of her name. Her parents picture is posted on Joshuas page.

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One Response to “ALERT……PLEASE READ”

  1. Becky Smith says:

    Hello,
    I believe my son has PANDAS. Last summer, he had several tics flare up, as well as some OCD/sensory issues, and after several months, I convinced the Pediatrician to test for strep. While his culture was negative, his titers were double/triple the “normal” levels, so we started him on antibiotics. Within a week, ALL of the tics were gone…it was amazing. He went 9 months tic-free…a normal, relaxed, happy 8-year old boy. Now, we’re in the midst of another flareup. Lots of tics and OCD issues. We’ve done a couple rounds of antibiotics, with no improvement. We tested him for strep again, and once again, negative culture, high titers. At this point, I think I’ve gone as far as I can go with my pediatrician, and would like to find someone in the St. Louis area who can test him for other things and work with us on supplements, diet, etc. I understand that there is a group of Parents in the STL area who are supporting each other…does anyone have any PANDAS Doctor recommendations? Thank you, Becky Smith

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