Hey Betsy

I SO understand what you are talking about and I am so sorry for both your families and your daughters experiences and pain!

I have RSD/ Dystonia!! To briefly state my story, I developed RSD when I was 16 (and I am now 21) and it is now full body despite many physio and other treatment things. I developed full body dystonic contractures and now have Botox in my neck and hands to reduces contracture pain but they can't do that for my legs as they have set. I only have functinonal use of my face and can't move from the head down. I am semi bed bound, hoist dependent and a wheelchair user with 24 hour care. I lost the ability to eat solids for months but survived without NG (despite Drs begging mum to let me have one placed - she instead started a new therapy called spoon therapy) but still have swallowing and mouth issues.

However, I am very lucky to be at uni studying psy and living away from home much of the time! I do know some people, especially teenagers, with NGs and tube feeds and who have full body RSD. Is your daughter in and out of a wheelchair or in it full time? Have you been treated at John Hopkins? They have started to use drugs such as Prialt and have lots of experience with pediatric RSD.

Hope this is some help.

Love

Frogga
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