Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
My daughter, age 6, was just diagnosed with the hypermobility type of EDS. I was wondering if anyone here has a child with this or was diagnosed as a child and can share their experience. The indications leading to her diagnosis were her weight being disproportionate to her height (she is only 36 pounds but is almost 4 ft tall), easy bruising, multiple falls resulting in pain indicative of an injury with no visible signs of such, GI issues, and joint laxity, as well as a family history suggesting other members may have this as well. Her doctor made a few recommendations, such as increased vitamin C intake and swimming to keep up her muscle tone without taxing her joints, along with a modified PE regimen at school. To me, this seems like it's not enough, so I was wondering if anyone had any suggestions on other ways I can help. I want to be sure I do everything I possibly can.
pattigiroux
I was told today that my son may have this type of eds. I'm terrified!
joshseds
The advise of modified PE made a huge difference for me, and it is what I am doing to help my kids' longevity as well. My wife and I moved so that we would have easier access to a pool. Swimming is very joint friendly and helps build strength around the muscles, tendons, and ligaments around joints. Many of my family has EDS. Although I have always had lower muscle tone and hyper mobility in joints, I luckily participated in activities growing up and throughout my life that I believe have kept me functional a little longer than some of my relatives. There are exercises that I have found that my kids will still mimic me doing that look similar to movements you would see in a lot of Yoga, Pilates, Tai Chi and Qi Gong classes. My Daughter is turning 2 in August, and my son will be 5 in February, so there is still a lot of 'monkey see, monkey do'. Example, kids think it is hilarious at how hard it is for adults to hold a 'plank'. It is much easier for their short and light weight torsos than ours, but it starts building the strength in the core muscles that will help reduce with rib dislocations later. It also strengthens shoulder, elbow and wrist joints (we do ours on our fists so that our wrists are straight). I will often have my son lay on his stomach while playing with his action figures on the floor, and tea parties or barbie time with my daughter are often spend on our stomaches. This forces us to use muscles to hold ourselves up while we play, activating muscles in the lower back, shoulders, and arms. I will try to find a way within the next couple of weeks to set up a group through this site with more info on movements, exercises, ect, that have made difference for my family and I so far.
spbarlow
Thank you both for your response. Patti, yes I am very scared, but I have spoken with several people who have been wonderful in helping me understand what I need to do. Josh, thank you for your advice. We are having a meeting with her PE teacher before the start of the school year to go over what he needs to watch for. She's only 6, so they don't really do many rough activities, I believe, but we are having the discussion all the same. Swimming is in the works. My daughter does not yet know how to swim, but we have started private lessons, and she has already come further than I could've imagined. I have been trying to get her to do yoga with me, and she has, but only on easy poses. I'm fine with that though. I will certainly try your suggestion of having her play on her stomach, and I will look for your group. Thank you both very much.
elena13
I am almost 14 and have the hyper-mobility type. I've experienced countless injuries, typically broken bones, dislocations, and subluxations since third grade. What I have concluded in my years with this as I kid is that it is so important to stay strong muscularly. Whenever I have stayed fit, I tend to get hurt less. I would recommend for sure getting her involved in swimming, because it is a great sport for building muscle. My parents have regretted not putting me in swimming as a little girl. It is also important to give your daughter someone to talk to at all times. This syndrome can be very difficult emotionally, and I've been fortunate enough to have a mom with eds that can be there for me. Hope this helped :)
bulldog
My daughter just turned 18 and though eds had been mentioned at around age 8 could never get any Dr to diagnose. Until she was 16. The problem we have found is there are not many doctors out there who know enough about the disease. She also experiences kidney stones one about every 6 weeks. She also has GI issues. She has had several joint dislocations and a knee reconstruction to stop the dislocations. Which has helped. She also has had problem with her elbows filling with fluid and locking up where she could not bend them. I know this sounds horrible but in retrospect a lot has happened because we were not as guarded as we should have been meaning she played softball etc. with eds u must avoid any contact sports. Because their ligaments are lax a simple fall could cause a major injury. You may think I don't remember what I could have done to cause this pain but in essence you did do nothing. Swimming is great. PE is not. My daughter has set out for many years. It's hard because people look at her and see a normal looking child but there is nothing normal about this disease. Talking with others who share in this helps. Counseling for your child is helpful as she gets older.
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