Experiences of hyper-mobility

[user2085372673]

Hi all,

My daughter is 18 months and not walking and is yet to say a word - she’s delayed in most areas - she’s been assessed by a paediatrician so it’s not just an ‘all babies develop at different speeds’ thing.

We’ve need told she’s hyper-mobile and she does seem to fit the profile from what I’ve read online about it. We’ve seen a physio who has given us some strengthening exercises for her core.

However, it seems to effect people in really different ways and as she’s delayed in lots of areas, I’m just wondering what could be the hyper-mobility and what probably isn’t and could be something else.

If you have a child who is hyper-mobile, or are hyper-mobile yourself, what effects has it had on your child/you? Research seems to suggest that it doesn’t effect speech, but has anyone found that it has?

Most of the time I’m fine but sometimes I feel so desperately worried and helpless as I just don’t know what to do or how to help.

Thanks so much in advance.

Has she been diagnosed with low tone aswell?
My son has hypermobilty and low tone
The low tone does effect his speech feeding and fine motor skills
My peaditrician advised the low tone is a symptom of a condition rather than it's own diagnoses
Have you been offered portage speech or language therapy or occupational therapy
What other delays does your daughter have

So variable. My dd was an early speaker but struggled to walk & experienced a lot of pain. Ds & I were OK for walking & speaking, but struggled with fine motor skills (still do).

They said she doesn’t have low tone so maybe the speech is something different. We are going to see speech and language next week so hopefully they will be able to give us some ideas.

Corythatwas- has it severely impacted your life and stood in the way of keeping things? Or is it just more of an inconvenience? I’m dysprasix and I wouldn’t say it’s caused too many problems other than feeling awkward that I’m clumsy. I guess handwriting was hard?

In my case, the only problems are centred round my dodgy wrists and finger joints. Hasn't really impacted my life at all: I've just learnt to do things in different, sometimes slightly awkward-looking ways. I peel potatoes back to front because I don't have the wrist strength to pull the peeler towards me. I did struggle to learn to tie my shoelaces and still do a bit but honestly- whose life is seriously impacted by not being good at tying shoelaces? I even worked for nearly two years on archaeological sites, just used my legs (which are stronger) to push the shovel. I now have a career where these things don't matter at all.
Yes, handwriting was hard and still is, but for most things I can use a keyboard. If there is something that makes life difficult at work, I just ask for an adjustment; most things don't cost a lot and work don't really care as long as the job gets done.

TO be fair, my dd was seriously impacted, but then she has full-blown Ehlers Danlos with low body tone and co-morbidities, so that is rather different. Even so, she is now studying for a very physical career (acting) and is getting extremely good at thinking of ways around.

We thought ds would go down the same route but he was fine once he stopped growing, now does a very physical college program, and goes to the gym several times a week and does weight-lifting.