Hello denissage1 and welcome to NeuroTalk. I didn't even know what PNE Syndrome was until I looked it up, and I see it's very rare and very painful. I'm so sorry to know that your daughter is suffering.

Unfortunately I'm unable to help you with your question, but maybe if you were to post in our Rare Disorders Forum, some-one there may have some information for you.

Here's the direct link: http://neurotalk.psychcentral.com/forum2.html

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