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Hyper mobility -anyone else's?

(4 Posts)
CJBS2011 Thu 04-Apr-13 18:41:29

Hi ds recently told has hyper mobility- so he wears splints on ankles and is almost there with walking - he's 20months. Also because he doesn't talk yet - I.e. say 20 words (!?!?!) we were referred to paediatrician who has referred us to speech and language therapist which I am happy about! But they now want to do all these tests as they think he has a genetic disorder- think the hyper mobile thing and talking are linked! I wondered if anyone has a child with hyper mobility and if it presented other developmental issues? Ds is so switched on and understands everything so I am convinced its a bit of developmental delay!?!?!

firawla Thu 04-Apr-13 19:45:34

There's a thread on special needs children section with someone asking about this who's child is in a really similar situation and age, so might be worth having a look on that and all the replies in case theres anything useful for you?

One of mine has some hypermobility, his is not too bad compared to some and he walked at 20 months but he does have other developmental issues, very delayed speech, delay in a lot of areas. mine has autism but not been tested for any genetic disorders.

I guess all you can do is wait for them to do the tests, and see how the results come back?

rockinhippy Thu 04-Apr-13 20:03:37

Hi, yes my 10 yr old DD was diagnosed last November, took years to finally get there, but no developmental delays with her at all, quite the opposite, though with hindsight I can see that has affected her, she never crawled for example, & her hips are affected, & she has had handwriting problems, always way behind herself with her handwriting, until she we realised its because writing hurt her - she never complained until we asked sad - special pen & she now her writing is at the same level as the rest of her work.

I do think the vary a lot though, & some are affected far more & different types of JHMS/ EDS but I've personally not come across speech delay, though I'm quite new to it all & basing that on the parents & DCs I know via a Facebook Group

It's good he got diagnosed so early though, you will hopefully now get the help he needs, its taken us more than 5 yrs to get there & if I'd of known my own correct diagnosis, ie not Fibromyalgia & M.E. but JHMS too, she would have been diagnosed even sooner

Good luck

Hazbo Thu 04-Apr-13 23:54:20

are you talking about ehlers danlos? I have it with a beighton score of 9, as does my DS, Dsis x2 and DM and poss my DD. It really effects everyone differently. I wore splints and a brace till the age of 2 but have absolutely No negative effects of the EDS. My sister has some probs with her teeth that they think might be linked but that's it. Everyone else has no problems at all.

There is still so much they don't know about EDS but I wanted to tell you that not everyone who has it will be effected negatively.

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