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(39 Posts)
Melpf Mon 20-Jan-14 20:13:11

One of my 1 year old twins has been diagnosed with hypermobility. Has anyone had experience of this? She's too little to know how badly she has it and whether it's a symptom of something else but I'm still panicking!! Thanks.

flatmum Tue 21-Jan-14 14:21:28

Sorry Couthy - see you already mentioned Ehlers-Danloss syndrome

The anxiety thing worried me too as also seems to fit. I have 3 dc and ds2 who is being assessed is definitely more "sensitive" for a better word that his brothers and seems to take things to heart much more. I know anxiety apparently can go along with (some) typed of hypermobility.

zipadeedooda Wed 22-Jan-14 11:42:56

Hello, firstly please don,t panic It's now advice of rheumatologist experts that the term hypermobility shouldn't be used in under fives as its meaningless, only means they are more bendy than average. Flexibility is a spectrum some children and adults are more flexible than others.I work with a lot of 'hypermobile' children! Most children like this have minimal or no! Problems and only in very small number of cases do they really have hypermobility syndrome which is what some of the other posters are referring to and what a lot of things you'll find on Google are talking about where children have pain or rediced strength etc. Also for those mentioning the beightons scale can I point out it's not been validated for use in children and most one year olds will score highly in it, babies are bendy! Ask for referral to paediatriXian or child physio to get full and accurate assessment, meanwhile relax and enjoy your wee one. On a personal note my partner was and iS hypermobility, can get legs behind his head etc and has never had any issues, also all gymnasts and ballet and many other types of dancers would be classed as hypermobilile, it only means bender joints than average, Ehler fdanlos is a connective tissue disorder which is which is not the cause of most hypermobility. Most children with hypermobility have no issues and it shouldn't be diagnosed in a baby. Get professional opinions from someone who can see you and your baby and don.t assume your baby will have the issues others have mentioned. All the best

zipadeedooda Wed 22-Jan-14 11:43:59

Sorry for typos, on my phone!

CouthyMow Wed 22-Jan-14 13:06:59

Zipadeedoodah - it can and SHOULD be diagnosed early , actually, as the earlier you start the Physio strengthening exercises, the better the outcome.

I respectfully disagree. It was patently obvious with my DS2 that he had hypermobility syndrome from around 7-8 weeks of age, and the problems just keep coming.

I agree that in milder cases of hypermobility, it causes minimal issues and I also pointed out that many Olympic gymnasts are hypermobile.

I agree that the Beighton scale isn't much help for ver young babies, but I was addressing that comment to the poster with a 6yo.

And it IS possible to diagnose fairly young DC's, and start corrective treatment if necessary - my DS2 would never have walked if he had not started treatment on his feet and ankles at 7 months old. And my DS3 is unable to walk without his orthotic inserts and very supportive boots. If he hadn't received those when he was 21mo, he would not be walking either.

curiousgeorgie Wed 22-Jan-14 13:13:23

My DD has hypermobility and was diagnosed when she was 20 months and still not weight bearing.

I was so worried as they checked her for cerebal palsy and muscular dystrophy but those tests came back clear and she is under a consultant now and has regular Physio at the hospital, as well as exercises to do at home and anti sensitivity brushing.

She's 3 years 4 months now and walking, running and unless you knew, you wouldn't think there was anything wrong with her.

She still has trouble with stairs and can't jump and I have to use my double pram for long journeys as she gets so tired walking. Any questions feel free to pm me smile

TitsalinaBumSquash Wed 22-Jan-14 13:18:06

I have HMS with a Brighton score of 9/9 sad

It was a blast as a child I could bend myself into all sorts of weird and wonderful positions to amuse my friends. This is to be discouraged, I suffer for it now, I'm only 26 and spend a lot of time in agony.

I dislocate my shoulders, hips and fingers/thumb a lot and had some severe pelvic problems during pregnancy, it is manageable though so please don't worry that your DCs will suffer badly.

I wasn't diagnosed until I was an adult and physio does sod all, hydrotherapy however is excellent.

curiousgeorgie Wed 22-Jan-14 13:38:40

Physio really helped my DD..

CouthyMow Wed 22-Jan-14 13:44:11

Hydrotherapy is excellent. DS2 waiting for another block of 6 1-2-1 sessions.

CockBollocks Wed 22-Jan-14 13:55:53

When she is older, swimming will really help. Great for core strength without stressing over bendy limbs.

My son appears to suffer from Ehlers Danlos, the non-heart affecting form. It would appear that it comes from my side of the family. We are both hypermobile, as is my mum. We have very stretchy skin!!

It has affected him at school which is how we found out. He needed to see an OT, physio and podiatrist. All the PP have great suggestions.

She is still young so I wouldn't get too worried yet and just keep a close eye on how it might be affecting her.

flatmum Wed 22-Jan-14 14:54:43

Melpf - just wanted to retrospectively apologise for hijacking your thread somewhat - I was so pleased to see a thread on this as, as I said, I am just about to get a referral for my 6y old and was feeling guilty about not pushing for one sooner.

Couthy, zip, curious and cock (sounds like a bad Folk Group smile) thanks for sharing your experiences and all the advice - hopefully mine and Melpf children will only have the mild form and maybe just need some physio. Couthy very sorry to hear about your ds being so affected by it - sounds like you have everything in place to support them which is inspirational. I have ordered some of the Stabilo pencils you recommended as my ds is getting really annoyed at school recently when they do handwriting practice as the pencil keeps pinging out of his hand and skittering off. I have had a word with his teacher so she knows he is not just messing around.

Have any of you come across toe-walking being involved in your HM experiences? I am thinking the 2 must be related because my ds can walk flat if he wants to, though a bit awkwardly, and when I ask him why he walks and runs on tip toes he says because it is more comfortable and faster.

CouthyMow Wed 22-Jan-14 15:07:42

Yes, DS2 and DS3 tiptoe walk / walked. DS2 stopped at around 8yo, 3yo DS3 still very bad for it.

CouthyMow Wed 22-Jan-14 15:08:22

Plantar fasciitis can go along with HMS, and can make the bottom of your feet feel 'tight ' when you put them flat on the floor.

flatmum Wed 22-Jan-14 19:32:49

Interesting. I sometimes get plantar fasciitis, particularly when I am running a lot. I used to have to have steroids injections in my foot when I was doing a marathon. He does say it's more comfortable to walk on top toes. Did your dc have specific physio for the toe walking?

flatmum Wed 22-Jan-14 19:34:01

Interesting. I sometimes get plantar fasciitis, particularly when I am running a lot. I used to have to have steroids injections in my foot when I was doing a marathon. He does say it's more comfortable to walk on top toes. Did your dc have specific physio for the toe walking?

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