Hypermobility/ history of Ehlers Danlos

[Hibbutyhop]

Currently awaiting a hospital appointment for my 11 year old who has previously been noted to be hypermobile. As we have a family history of Ehlers Danlos, I’ve pushed for a review to see if we need further assessment or diagnosis.

Whilst we wait, can anyone advise on how to help her? She’s experiencing increasing joint discomfort and recently had (what I assume is) a dislocation to her knee- it clicked back in fairly quickly. Any general advice on exercises, stretches, helpful movements? I feel a bit helpless at the moment!

I would recommend Tom Morrison. His programs are excellent for EDS . There is some free stuff on his public page.

I use it alongside weight training to keep muscles strong around the joints but I don't think I would have entertained weights as a kid.

I feel for her, it's painful to put up with. I wasn't really given any advice other than go swimming when I was diagnosed.

My DC both have eds and we had to find exercise which was right for them. This was different for each of them and depended on which joints were affected and the help needed. DD uses archery to build stability in her upper body whereas DS swims.

We also worked with the school to find supports eg DD needed a writing support and pen grips at first and then a laptop later, both DD and DS need to wear boots rather than shoes, DD needed a chair with a back instead of a stool in science lessons. A lot of these decisions were helped by working with an OT, physio and biomechanics so I'd ask for a referral to them. Getting this in place and establishing a normal way of working meant both qualified for exam dispensations easily when the time came. Both use laptops, have rest breaks and extra time.