Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

anonymous0121

help finding plasmapheresis on west coast...

Recommended Posts

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?

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...