anonymous0121 Posted September 27, 2015 Report Posted September 27, 2015 help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?
tj21 Posted September 28, 2015 Report Posted September 28, 2015 In Northern CA, have you contacted Amy Joy Fishman-Smith RN/NP at Pacific Frontier Medical 650) 474-2130?
dcmom Posted September 28, 2015 Report Posted September 28, 2015 Who are the three doctors that have recommended it? Do they have hospital privileges? Plasma pheresis is performed routinely at most hospitals. Many hospitals have their own team, some use a blood bank or red cross. If your doctor is well respected within a hospital community, they may be able to make a plea to the doc in charge of that dept, showing studies, etc. They could even contact Dr Swedo and Dr Latimer for help with protocols. The biggest issue is, most likely, insurance will not cover it. You will probably need to be pre approved (highly doubtful) or pre-pay. The cost can be very high. I will tell you, for my kids, it was a miracle. I have two pandas daughters, one who had apheresis once, one who had it twice. All three of those experiences were amazingly positive and brought the girls back to 100% very quickly. That being said, it is not a cure, so it may h ave to be repeated with subsequent flare ups. Good luck!
cynditk Posted September 30, 2015 Report Posted September 30, 2015 dcmom, did you pay out of pocket? How much did it cost? How did you get it recommended for your daughters? Thank you, Cyndi
pepper1 Posted October 5, 2015 Report Posted October 5, 2015 Did you try Jennie Francovitch at Stanford? Shes done PEX for teens with PANS in the past. Read this link, http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards
cynditk Posted October 6, 2015 Report Posted October 6, 2015 you have to live in stanford's service area to be treated by that clinic.
Sirena Posted October 8, 2015 Report Posted October 8, 2015 Our family has had a good experience at Cedars Sinai in LA with a special protocol --although not for PANS/PANDAS.
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