Newly dx 12-year-old daughter; looking for local support

[pennymenny]

My 12-year-old daughter was dx with a 2 cm chiari on Friday; we are both feeling winded and a bit terrified. She also has juvenile dermatomyositis (so we have done the big, scary medial diagnosis thing before), but has been in remission for that since 2009. Ellenbogen is our choice for neuro (he is already my doctor for my own brain thing) but we are looking for local support, especially from children my daughter's age. Any ideas? I'm not sure how to start --

[selmaS]

  Hi and welcome to the Chiari forum.

As the above posted mentioned u can check with the Dr or local hospital or clinic as many times they have lists of groups.

I would also encourage u to look into Ehlers-Danlos as it is also a connective tissue disorder related to Chiari and many of the symptoms and issues are similar to the Dermatomyositis.

If u can not find a local Group, there r ways u can start one....

I hope u continue to post here so other parents can offer support to u and ur DD.

[Krissy_c]

I'm not sure if I'm local to you or not but when I was diagnosed I told a lady at work about it and she was amazed because her niece had  the same thing when she was young. She was 12 living in Chicago and had the surgery done at a childrens hospital. My co worker said because she was so young they think she came out of the decompression surgery well! When the visitors came to see her she was sitting up and talking!
Praying for your baby, I'm sure it's  scary time for u both!