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I think it may be EDS

   So I guess I'll start with the fact that we have family history that I only found out about now after my child broke her 2nd bone in 5 years (just by smacking her shin)

   My daughter has had issues since she was an infant. She had severe global delays, is flat footed and wore AFOs for   her ankles being wobbly, she was in EI for 3 years and then in special needs preschool, her skin is very very pale and you can map out most of her veins, she's got wide set large eyes and 0 nasal bridge, she's hyper flexible, and her fingers, wrists, elbows, and knees over extend, she has chronic pain which we were told is 'growing pains'

   When she was 4 she went to a genetic doctor who took blood, did xrays, and said she was fine. Then she broke her wrist by falling off the couch, now she's broken her leg.

   Her skin is very stretchy and bruises so easily.

   My father and half sister both have EDS.  I've got SI joint dysfunction, extreme chronic pain. And I just don't know where to go from here?
  
   Who do I take my daughter to see now? How do I find a doctor?

   I'm attaching a photo and you can see her over extended finger joins on her first few fingers. Her thumb can touch her arm when she bends that too.
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620923 tn?1452915648

  Thank you for that info on the Dr in Chicago...I think we should start a list here....


  
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Avatar universal
Hello!  If you are in Indiana, you are much closer to Dr. Brad Tinkle, who I believe is still in the Chicago area. He would be the very best doc for your daughter, IMO. Do look him up.
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620923 tn?1452915648

  Hi and welcome to the EDS Group.

I also have many of the issues ur DD has, except for the thin skin ...u  can not see my veins that well....with there being different types  u will want to find a rheumatologist that specializes in EDS....I know there is one in Baltimore , MD which is out of state for me but it is where my Drs in NY referred me and I live in PA....crazy what and where we have to go to find the right Drs...but I am going to go where I will at least have a DR  that understands this condition as it can be far too painful to leave to neone else.

Mayb the Dr in Baltimore can suggest a college in ur area,....??
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