When do we discuss his condition.

My 7 y.o. son was diagnosed with Ehlers Danlos III 3 years ago.  At this point he demonstrates weak muscle tone and hyperextensive joints.  He is not athletic, runs badly, won't learn to ride a bike.  He is not really aware of anything different about him, he just thinks he's not an athlete.  We always tell him that different people are good at different things.  His friends have just begun to notice (ie. they've made him referee in soccer cuz he can't keep up) but are not making fun yet.  We are worried that he will be teased later on though.  In addition, we are told that it will most likely get worse as he gets older and his body puts more stress on his joints.   Dislocations are very common though we thankfully haven't experienced this yet.  When is a good time to tell him and how do we approach this without lowering his self confidence and keeping him active.  He is currently in swimming and acting classes.  We tried karate, but since he wasn't good at it, he lost interest.    Thank you very much for your help.

[Kevin Kennedy, Ph.D.]

Dear Penny,

It's OK to mention this now, and begin to teach your son about his condition and the impact it has on him. This will help him to understand why he has some limitations around physical activities of certain sorts, and as he gets older he can grasp more and more about it. If there's any sort of peer support group offered through his health care providers, take advantage of it, and try to use written materials with him.

[Bethanyatg]

Penny I just found your post and want you to know that I too have the HEDS. I leaned of this when I was 12 years old. I too was a bit clumsy and never could keep up in gym class. I was twist my ankles daily and walked with a bit of a limp. My symptoms started to get worse when I became hormonal which was right about the time of my diagnosis but the diagnosis may have never come had I not had an older sister that was all ready diagnosed with the disease.
The best thing to do is tell your son. He should not contort his body in any way because it will only cause the joints to become weaker. Bracing is very important when any of the joints start showing weakness. Had I known this back when I was diagnosed I may not be disabled today because of the pain. EDS can be a very painful condition (I wear a pain patch which I change every other day to help me function)
Your son needs exercise to help strengthen muscle but it must be low impact. Swimming is very good, Palates and sometimes low impact yoga. Once you start looking for more information you can contact me and I will give you some wonderful websites (not sure if I am allowed to post them here.) I know of one EDS site that also has a children's area, where your son could also get a pen pale with EDS. Get your son involved in art, music and any other hobby like that with little or no stress on the body. If you can get your son lessons in art or playing an instrument he will build up his self esteem and make more friends with similar interests.
I was not allowed to participate in gym class when I was young so I also pulled my daughter out of gym class with a doctors release. My daughter also had horrible IBS problems due to the EDS and was sick often. Schools must make leaning comfortable and accessible to everyone. My daughters high school sent a teacher to our house so that she could keep up and graduate with her peers. If carrying books is difficult for your son the school must give him two sets of books. One set he can keep at home and the other at school. Heavy backpacks can do a lot of harm to our shoulders, back and arms and having two sets can make a big difference in a child's life that is suffering.  

I feel for you Penny as it hurts to see our children suffer. Get as educated as possible and make sure that your son is also educated as he gets older. Carry medical documentation to every doctors appointment you go to. If he is having eye problems take the EDS/eye medical documentation with you. If he has digestive issues take along any medical documentation you can find on this subject. I have plenty which I would share with you or anyone else that needs it. We can lean together to make sure the next generation of EDS patients don't suffer like I do.

Good luck and you and your family are in my thoughts.