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Ehlers-Danlos Support UK
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my 5 year old

Ok so i dont live in the UK but I figured I would try it out and see I actually live in Virginia Beach. My five year old son was just diagnosed with hypermobility collagen deficiency. The neurologist said that they only way to 100 percent sure would be a genetic dna test for what he has however no insurance covers the test so thats where im at right now. any one else have any advice for me or anything his main problem is when he is too active which hes five so you can imagine how active he is that he crys in pain at night that his upper thigh hurts. There is no meds nor heating pad or anything that resolves his pain so we try to keep him less active which stinks because he is five...thanks for any advice

2 Replies

I wouldn't worry about not being able to afford a genetic test. For many of the versions of hypermobility syndrome or EDS there is no genetic test anyway.

As for pacing with a five year old, I was there 15 years ago. It is hard work, but I tried to have quiet fun things to do as well as active things. So I would read aloud while he played with lego which kept him in one place rather than running around. I also used TV with DVDs to keep him quiet and resting for a bit. And swimming is a great way to get them to be energetic but easier on their joints.

It is surprising though how much they can take in at that age. have you explained to him that rushing around during the day is what is causing his pain at night, and seeing if he can help you to self manage, or at least allow you to remind him in the day when he needs a rest or a change of activity that if he slows down he might not have so much pain at night?

Good luck, it isn't easy, but if I had my time again I would have tried a lot harder to do more activities that resulted in less pain and damage for my son.

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try and find a research program, they are very sparse and hard to find, but you just may be lucky


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