Hello @texasmama, welcome to Connect. I'm sorry your daughter has to deal with this disease at such a young age. I know it's hard for you also and I thank you for being an advocate for her. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @ethanmcconkey to see if he is able to offer some other suggestions or possibly move your post this discussion for more visibility.

Groups > Brain & Nervous System > Parsonage turner syndrome *
— https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@texasmama has your daughter's doctors discussed any treatment plan or suggestions to help your daughter?

John

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