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New to PANs/PANDAS - 11 year old ASD son


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Have called for an appointment with Dr. Tanya Murphy over at USF but intake person advised it will take up to 2 weeks before I will get an answer on whether Dr. Murphy will even take on my son as a patient. The initial consult can also cost $1,000 to $1,500. I've read in a Dec2014 thread on this forum about Dr. Murphy not treating PANDAS patients directly much and concentrating on research instead. That a Dr. Megan Toufexis, also at USF is who is consistently working with PANDAS patients.

 

I think my son is suffering from PANS as he has not tested positive for strep when he "fell off the cliff" in Nov of 2015 and started for the first time having tics, daily sleep difficulties and much more anxiety in general. Looking back at his historical difficulties he may have been suffering all along since age 7 years - PANDAS/PANS - as we only became aware of the PANS/PANDAS condition 2 years ago but did not then connect the dots.......

 

We haven't slept a full night of sleep since middle of November and desperately need help. Can anyone tell me anything about Dr. Murphy and Dr Toufaxis - good, bad or indifferent? We are hoping if Dr. Toufaxis is good with PANS/PANDAS, we will go see her instead as she is covered by insurance and I am guessing she is going to be able to see my son sooner. I notice that both doctors don't work in the same department but that may not mean anything.....

 

And if not USF, PANS/PANDAS specialist recommendations? We live in Tallahassee, Florida but will consider travelling for the right Dr.

 

Thank you for any advice or comments anyone can provide.

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My daughter was diagnosed by Tanya Murphy at Rothman 3.5 years ago. She's a researcher, not a treated. And if she was FREE I wouldn't go back. I've known a few who were very happy with Dr. Toufexis, but, they are not out of box thinkers/treaters and are very slow to treat. I highly recommend Scott Smith, PA in Melbourne

As a starting point. He's functional Med.

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  • 7 months later...

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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I will reiterate my earlier suggestion. The only actual pandas specialist in that area (central FL) is Scott Smith, NP who has moved his office and is now located on Merritt Island. He is an expert. There is a pediatrician in Brandon Who is familiar but, you must join his practice as a full-time patient. I believe his name is Robert Friedmeyer. I strongly recommend against going to Rothman. You might get a diagnosis. You might not. But if you do that's all you're going to get, honestly. You need to get aggressive and you need to start traveling to see specialists. My daughter was treated by Dr. Rosario Trifiletti in Ramsey New Jersey who is one of the foremost pandas specialist in the country. When Scott relocated to Florida we switched over to him. My daughter gets IV IG, immunosuppressive, rituximab, plasmapheresis and Cytoxan therapy at Miami Children's Hospital from her rheumatologist but, those big gun type treatments should be reserved until after first line treatments have been tried with somebody like Scott Smith. I travel from Delray Beach to hours to see him. Are you on the Florida PANDAS parents FB page? or, the general Panzas parents Facebook page? You will get terrific resource information and support there. Much better than over here.

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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.

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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.

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Lisa Rankin in Port St. Lucie is a MAPS MD who take some insurance. I would join the PANDAS parents Facebook page and post your q. I would join the Florida PANDAS parents Facebook Page, in particular, and ask. There is a pedi, Robert Friedmeyer in Brandon that is PANDAS knowledgeable and friendly who takes insurance but, you must be one of his patients, he doesn't do consults and is not a specialist.

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Jhu has taken over all children's hospital in St Pete and I have heard they are not pandas friendly. I was also not pleased with Rothman bc we traveled far and ended up with a fellow instead of the experienced doctor --we switched.

 

Another friend ended up switching to a Dr B in Florida.

 

Good luck, getting the team is a hard and $$$ challenge.

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