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help finding plasmapheresis on west coast...


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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?

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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!

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