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Long Overdue Update

It has been a long time since our last post but it seems things are heating up in the PANDAS world…especially in St. Louis.
Joshua is doing well. We finally have a local biomedical doctor who is able to keep him healthy and update his testing. We no longer have to make frequent trips to Kansas City.
Our support group in St. Louis now represents well over 100 children and those are the ones we know of. I am typically contacted by a new mother at least 1-2 times per month as are other mothers with children with this diagnosis.
I attended the 1st national PANDAS conference in Rhode Island in November of 2013. It was sold out…over 400 people were present..and over 100 physicians. Dr. Susan Swedo and Dr. Madeline Cunningham were speakers….among other amazing researchers and physicians. It was emotional for the mothers. Many of us have known each other for years through closed PANDAS groups and we were able to meet each other face to face.
Our support group feels like it is time for the Midwest to become educated and start helping our kids so parents from this area aren’t traveling all over creation. We have started the process for our own conference which will take place most likely in the spring of 2015. We are currently in the process of making sure CME credits are offered so physicians will be more likely to attend. Dr. Swedo let us know that there will be a bound issue of the Journal of Psychopharmacology? that will be dedicated to PANDAS research in late 2014…the timing should be perfect. The NIMH study results should be released around that time as well which will only increase awareness and give physicians resources and options for treatment.
Our family has been on vacation for the past few weeks and ready to head back and get busy. Have a wonderful summer and I will continue to update as there seems to be much more movement in the PANDAS world these days!! Have a fantastic summer!

5 Responses to “Long Overdue Update”

  1. Colleen says:

    thank you

  2. Beth says:

    Would you mind sharing the doctor(s) who you’ve found helpful in St. Louis? I believe my 3 1/2 year old daughter may be suffering from PANDAS and I’m having trouble finding a doctor to work with us. Thanks!

  3. Crystal says:

    I was wondering if you would share who you saw in Kansas City–we are from that area and I’m looking for a biomedical specialist for our son with Tourette’s. Thank you!

    • admin-JMP says:

      We saw Dr. Baptist. He was a great start for us and we still see him for my youngest son’s allergies. We are seeing Dr. Tracy Fritz in St. Louis now for Joshua….she is brilliant and would be worth the trip. She bills insurance for you but is not on any plans so she is out of pocket. She has been just incredible and I still can’t believe she is right here in St. Louis.

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