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Ehlers-danlos - Suspect It My Son?


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My son and I went though the 9-point beighton score to see how flexable he was, he easily did 7 out of the 9 activities. He has been complaining for a long time of joint pain, fatique, achieness,...He also has a low BP but so far no pots symptoms thankfully! He is super flexable, which led me to check out EDS. Does anyone know who I should go to first? Just see our family Ped first? We are in NE OH anyone know of a doctor familiar with EDS?

Yikes

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I myself was just diagnosed with EDS (at 33 years old) by my dermatologist. I scheduled myself (at the advice of the dermatologist) to see a genetics doctor and genetics counselor to get it typed (I am pretty sure it's the hypermobility type, I can do the "tricks" too). I called my kids ped. and they told me to find out what kind I have and then let them know (since the kids would have the same type...if they have it of course). From what I can gather about EDS there is a 50% chance that you or your husband has it also and passed the gene along to your son.

I wish I could advise you further, but I am just learning about this also. I would say to go to the pediatrician and find out whom they want you to see next (I would bet it will be a genetic counselor and a geneticist).

I don't know of any in OH. I live in MD (sorry). I certainly feel your sons pain

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Have you tried the Cleveland Clinic??? They are one of the best in the nation for multiple things and since they should be pretty close to you...I would definetly give them a try. Otherwise...University of Toledo is my only other suggestion.

Good Luck!

Susan

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Hi Yikes, there's a doc at the children's hospital in cinncinatti--his name was posted a few weeks ago. He specializes in EDS. Perhaps someone else here might chime in with the info? I know it's a hike from NE Ohio, but it's the closest I can think of.

Actually, any doc can make the dx--all the dx info is available on the EDNF website. Depending on the type, it may or may not require biopsie of skin and/or blood test.

Nina

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heylo :P

i know someone who has seen a doc who specializes in EDS at UH (university hospitals) in cleveland (affiliated with case western) but am not sure of her name or if she sees children. you may want to check out UH though as Rainbow Babies (their children's hospital) is quite the place. i have had just as much (perhaps more) luck at UH with specialists as at the Cleveland Clinic and actually the clinic has no docs that have any expertise in several of my health issues. go figure.

if you decide to pursue an appointment locally perhaps call UH & CC and at least see what they have to say. or peruse their websites for the docs in applicable departments as it almost always has the docs' particular specialities/interests.

hope this helps...

:angry: melissa

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