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TLJOHNS

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  1. I have contacted Scott Smith's office by email and phone and am waiting for a call back. I contacted Megan Toufexis' office in Tampa, hoping she took our insurance, but she no longer accepts insurance and is self-pay only. Any other suggestions on good PANS/PANDAS providers? At this point, I really need to find someone who takes insurance... I have met our annual deductibles/out of pockets due to an extensive illness of my husbands...We are in super bad financial shape and paying out of pocket is going to be really hard. Maybe impossible, short of selling our house. Which I might be desperate enough to do soon.
  2. I am also new to all of this and am desperately looking for a good diagnostician (& treatment provider) in Florida or Georgia. Can you tell me the full names of these doctors and where they are located? I am questioning PANDAS/PANS with all 3 of my boys (13, 9, 6) AND my husband! Is that possible? , all have similar "symptoms" but my 9 year old is doing the worst and seems to be deteriorating further. All 3 of my boys had chronic, really bad ear infections as little guys, as did my husband as a child, all have anxiety, meltdowns & rage attacks (esp my 9 year old), bed wetting (my husband did as a child too), tics (my husband did too), ADHD, sensory issues, lots of GI issues (esp my 9 year old) etc. Psychiatric meds (for anxiety & bipolar symptoms) have never "worked" for my husband, ADD/ADHD meds never did anything for my 13 year old. We are in North Florida and have LOTS of deer even in our yard. All of my boys have had multiple ticks bites. All 3 & my husband also have MTHFR defect...it seems from what I have read, that there is some link there - possibly in the body's lowered ability to detox - ? Anyway, I am SUPER desperate to get help for all of them...esp my 9 year old who is really suffering. Any provider suggestions?
  3. Does anyone know if Scott Smith, PA is still in Florida? I can't find a current office listing for him. I was looking at a provider familiar with PANDAS/PANS in Gainesville, but she is not currently accepting new patients. Many do not seem to recommend Tanya Murphy in Tampa, plus she's not on my ins and just initial eval of $1500 out of my range of ability...though I am getting desperate for my poor little boy and will try to find a way at this point no matter the cost. Anyone on here in North Florida? I'd love to know what treatments & where you are getting them & how the results have been. I am not on FB...I know, one of the few.
  4. We are also in Tallahassee and have also been considering going to see Dr. Murphy but, have been looking for a doctor (without much luck) that is covered by our insurance. Finding a PANDAS/PANS doctor has been a bit like trying to enter a secret society! I'd be interested to know if you ever found a doctor in Florida who was good. I am also looking at a doctor in Gainesville. My 9 year old son checks off almost all of the symptoms (except anorexia, his is the opposite, compulsive eating - has as gained 20 lbs in the past 10 mos). He has sleep disturbances, incl night sweats, rage attacks, severe anxiety, bed wetting, problems with focus, tics, joint pain in his fingers, etc. He has not had a lot of strep, but he had chronic ear infections as a baby/toddler and has had about 8 tick bites in his lifetime...including one about a year and a half ago when his symptoms blew up. I would love any feedback on great doctors in Florida or Georgia. He's definitely getting worse, some days I feel like he's slipping away. It's scary.
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