My 8 Yr Old Daughter Now Knows She's Different

Hello everyone. My daughter is 8 years old and was finally diagnosed with EDS type 3 this past year. I started to notice something wasn't quite right when she began crawling at age 4 1/2 months. First of all...this was very early. Secondly, she didn't use her hands and knees, but turned her feet upside down (90 degree angle) to push herself. I thought, man that looks painful. Then within months she was walking assisted by holding onto things. She was almost 8 months old. Her legs from ankle to knee were so badly bent, curved outward. She was put into casts when she was 4 months old from toes to knees to straighten her legs. At 13 months old they finally took them off for good and put her in braces. At 4 years old they took her out of braces and within a year her legs were bent just as they were when she was a baby. I went to so many doctors, but they all kept saying the same thing. First it was, " Oh she's just flexible, put her in gymnastics" or "why is she so bruised all over" and the next thing I know they're questioning my parenting. They thought I was abusing her. So she gets an eye infection one day, about a year and a half ago and the dr at the hospital says to me, have you noticed anything different about your daughter. I just broke out into tears and shook my head yes. He said, " I don't want to alarm you, but have you had her tested by a genetics dr? I think she has ehlers danlos syndrome." Long story short, we got in and sure enough...he was right. Every bone, joint in her body seperates constantly causing the bones to hit against eachother any time she moves. Her back and legs are the worst. She has had stitches so many times due to fragile skin, and is constantly bruised. She is 8 years old and weighs 36 lbs. She made it to 48 lbs the begining of summer but has since lost it all. She doesn't gain weight, no matter what I do. She is starting to cry with leg and back pain as well as severe headaches almost on a daily basis now. I am really begining to get worried, mostly about her weight, but everything else as well. I'd love to talk to someone who has a child with the same type of EDS my daughter has. Maybe I can get some answers.....because the Dr's aren't saying much at this point. I just keep hearing, therapy, braces, pain meds, over and over again.
wendykshelton wendykshelton
1 Response Aug 24, 2011

Hi Wendy. Sorry to hear about your daughter's issues. Can you tell me what part of the country you are in and maybe I could suggest a GOOD doctor you could go see. One that would have actual suggestions. There are many reasons your daughter could be having severe headaches. Without getting in to lots more detail it would be had to speculate, but EDS often has lots of "friends" it brings along. Hugs to you and your daughter.