Hypermobility Syndrome Diagnosis

[forago]

hi there my son who is 61/2 has recently been diagnosed with hypermobility syndrome. he's been referred to GOS for shoe inserts (toe walks) and a physio and exercise program due to muscle weakness.

I know a lot of people on MN have experience of this and I just wondered if anyone had any tips for doing the exercises and encouraging heel strike walking.

I am also a bit worried about the anxiety issued that can go along with it as he is already a bit of a worrier. Any tips for managing this as he gets older would be welcome, now we know he is genetically predisposed.

bump - anyone with children with HMS/Ehlers-Danlos?

Bumping for you. You could also try special needs?

good idea, will do thanks :)

My four dcs have EDS they do need a lot of encouragement to do physio but love hydrotherapy. I'm a bitbusy at the moment but feel free to pm any questions and I will answer them all later when things are less hectic!

Thanks Hedgehog will do

Bump for you.

One of my best friends has it, but it wasn't caught until she was 20 and moved to a new area, so I'm not sure on advice for children. The GP who diagnosed her (after about 30 seconds) said a lot of the problems she has are because it was left for so long. Glad your DS has been spotted early!

Hi forago I have HMS myself. There are some great groups on facebook that provide a lot of info and support.
Ive suffered since a very young age and only got a diagnosis when I was pregnant with my first child!
Hope you get some support and help for your little one. Not a lot of docs know much about it.
Also check out the HMSA website
Xx

DD is hyper mobile & has insoles (she has had them since November).

She needs to wear ankle boots rather than shoes to give her that extra stability.

In terms of her exercises, I was very lucky last year when in reception as they did it for me

Physio said to avoid the trampoline as much as possible (which is hard as she loves it) as it makes her knees bend the wrong way.

oh god don't tell me that about the trampoline he will be distraught, he goes on every day with his brothers!!!

we've got to go to GOSH for the exercise program and the insoles. The Dr also said get ankle boots - kickers so I will get some of them.

Thanks for the FB recommendation - I will find a group.

I too have HMS according to the DR and have passed it onto him - which makes sense as I suffered from v bad SPD during all my pg and can do the splits etc. I also have anxiety issues at points and have mild (or well managed?) OCD. I also had CFS in my twenties which he said is now thought to be due to HMS.

I am not too worried about the physical issues and toe-walking as it seems reasonably mild compared to some children - he doesn't complain of pain at this point and just has trouble with writing really and the toe-walking doesn't seem to bother him. I worry more about the anxiety as, well I am a worrier :) and he already shows signs of anxiety as well. Having suffered from this all my life I'd rather not have passed it on to him and am hoping I can teach him coping strategies from a young age.

Thanks for all the info, much appreciated. Anyone else go to GOSH to do their program?

DD has been to GOSH for something else (multiple food intolerances) & they were fab but not about her hypermobility.

Her writing seems fine although I do worry about as she gets older & is expected to write more at school that it may become a problem.

She did an intervension/physio course (6 weeks) with 5 other kids which concentrated on things like using scissors (which she finds v hard as she is also left handed which I think doesn't help), throwing balls, balancing on a large ball, standing on one leg etc.

DD wears kicker type boots too but I refused point blank to get ones with laces as otherwise I would be doing them up all the time as laces are something she struggles with.