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Raising Special Needs Kids Raising Special Needs Kids

I can't help but think our issues are connected

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I'm starting to believe that my issues and my sons are related. We both have hypermobile joints among other things. Someone told me I should look into Ehlers-Danlos Syndrome Hypermobility Type. It actually fits both of us really well. How do you bring it up to a doctor that you think more is going on than your child is diagnosed with? I don't want to sound crazy but I feel like we are missing a piece to the puzzle that would explain his wide array of issues. He has had genetic testing but no one has looked at the more rare conditions or even mitochondrial disorders.
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by on Mar. 22, 2013 at 9:31 PM
Replies (11-14):
Autiziumom
by Bravo on Mar. 24, 2013 at 2:15 AM
God be with u and grant u super wisdom to know wat to do!
sammygrl77
by on Mar. 24, 2013 at 10:44 PM
Great letter!

Some doctors appreciate suggestions and some don't. The ones that do are the ones you want on your team. That's my ultimate words of wisdom for the day. Lol.

But seriously, if a doctor doesn't have the answer and refuses to listen to you, they are not the right doctor for your child's case.
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Elyssa414
by Elyssa on Mar. 24, 2013 at 11:41 PM
I think your letter to the doctor was perfect! Press send! :)
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cheergurl84
by Member on Mar. 25, 2013 at 10:04 PM
Well I didn't send that but I did tell his doc I feel we are missing something and that I feel my problems and his may be connected. Here is part of her reply to me. She even signs with just her first name. I love her!

Not sure what to do about beyond genetics? He has been into neurology- that usually covers a lot.

At any time if you want another consult- it's fine.
I'm puzzled too.
Nancy
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