Anyone else got a bendy child?

[mankyscotslass]

We had dd (3) at the hospital today for another check for her intoeing gait. I commented again on how clicky all her joints were, this time they finally took me seriously and did all sorts of tests with her to check her joints...she can lie on her tummy with her knees at a 90 degree angle. legs lying flat to the floor, her hands fingers, wrists, elbows and arms can all bend to some seriously yucky degrees.
The upturn of this is that her intoeing may never get better because of her hyper mobility, she may never be able to adjust to the anteversion of her hips. She may need an operation at about 10 if teased for it. They did suggest she may be a good gymnast though!
Any one else out there gone through this?

Get her in a gym club, she'll be just the age for the London Olympics

My nephew has this, he doesn't sound as dramatically hypermobile as that though - she really is bendy, isn't she! I know that my nephew has difficulties with his fine motor skills and has been put on the SEN register at school for that; he's bright enough but he just needs to be on it in order to get the extra help he'll need with writing, drawing, etc. So that may be something to look for with her. I'd guess pre-school would pick that up for her if she goes to one.

Also my nephew has had a physio see him to give exercises to strengthen his muscles, and he wears specially supportive shoes to help his ankles. I think there is a fair bit that can be done to help.

Thanks for the reply!
Poor dd was a bit upset going to bed tonight, she told her daddy she dosen't want to be bendy
So we won't talk about it infront of her until she is a bit older. She went to preschool last year, but nothing was picked up other than her intoeing gait which we were already attending hospital for, so fingers crossed. She is just starting nursery at the school she will be going to for primary, so hopefully if they pick anything up it should be straightforward!
I am glad to hear your nephew is doing so well..makes me a bit more confident

HG, I am just wondering what happened when your nephew was diagnosed? The clinic we were at was for her walking, the doctor just confirmed she was hypermobile when I
mentioned it, we were given no other information really. I don't know if I need to go back to my GP for another referral or see my HV or what. The doctor said he would see her for her walking in 2 years. I will mention it to the Nursery teacher on Friday when we go again, but surely she will need a bit more to go on than just my say so. Also, I don't want to go overboard with it anyway incase it does not affect her at school and I get her labelled....tia

We were recently told by ds2's physio (he has CP) that ds1 is hypermobile, she just noticed while doing a home visit on ds2.
We had always just thought he was very bendy & clumsy. The physio said its largely inherited, very common but completely harmless in the vast majority of people.
She also said because of the flexibility he would make a good gymnast & it also improves co-ordination & strengthens the muscles & ligaments surrounding the joints.

mymatemax, thank you. That is it exactly, she is quite clumsy! I could see the consultant starting to think Dyspraxia too, but she is fine whith her other milestones and stuff, so they are not now worried about that...for the moment! I think I will have a look around for gym clubs locally, and also ballet classes. We may have champs in the making. DD was a bit upset again today, so we have told her it just means she is able to do things her brothers can't, which she liked the idea of

mymatemax, thank you. That is it exactly, she is quite clumsy! I could see the consultant starting to think Dyspraxia too, but she is fine whith her other milestones and stuff, so they are not now worried about that...for the moment! I think I will have a look around for gym clubs locally, and also ballet classes. We may have champs in the making. DD was a bit upset again today, so we have told her it just means she is able to do things her brothers can't, which she liked the idea of

sorry for double posts

This is going to have to be very quick, but my sister (now 31) has hypermobility syndrome - and it's caused her all sorts of problems. The problem is that a lot of doctors don't know much about it, and dismiss it as just bendiness.

There's an organisation to help sufferers - here

hth (and hope I haven't scared you witless!)

I have severe hyper mobility and i am 20, i can bend in all sorts of ways that shouldn't be possible! I experience bad pains in my joints becuase of it, but its managable.

I do have some quality party tricks though!

Thanks for the link, and thanks for the info/experiences. Still not sure what to do for the best though.
Charlee, how old were you when they discovered this? Ejt1764,when you have time I would be grateful if you could explain some more about your sister.
I have got some information coming from the Hypermobility Syndrome Association too.
Thanks again

I have hypermobility too, and have passed it on to DD.

It causes me all sorts of problems and the thought of someone with this condition doing gymnastics turns my stomach!

I pull or tear muscles very easily as I overstretch without knowing I'm doing it. I seem to get one injury after another.

Please be careful with your LO and don't let her throw herself around and damage something.

Themoon66, dd scored 9 out of 9 on the scale for hypermobility, so I think she is really bendy. There is so much conflicting stuff out there, I appreciate you telling me about your condition.
I am more worried about her being teased or bullied at school, and perhaps people not making allowances for her writig if needed...although she is nowhere near that stage now, only going into nursery.

My sdd (15) has hypermobility too and has pains in her back and legs. I don't think all the ballet she did helped actually so you might want to reconsider that. She has been told only to do swimming and pilates and not other types of exercise. But other than that there is nothing she can do. She doesn't sound as bad as your dd though as she isn't that bendy but her legs bend backwards when she stands etc.

Like most conditions hypermobility can vary in severity & some can put it to good use (in the gymn) & be unaffected while others will have greater problems.

Who was the hospital appnt with, was it a paed or a paed physio?
If she has not already been assessed ask for a referral by your GP to a paediatric physio, they will give your dd a thorough assessment, measure her range of movement etc & ime treat the symptoms & work on areas that are causing her problems regardless of dx.

Oh meant to say the only thing ds1 has trouble with at school is writing, its just so untidy & takes him ages. He is very bright & the teacher said if he could dictate all his work he would be the happiest kid in the class he just has trouble getting it down on paper.

In reception & yr1 he used large pencils with the rubber grips on which helped. Not sure which shops stock them but you can get them online.

Thanks for that, I think I will go to my gp and ask for a referral to a physio. The appintment at the hospital was actually about her walking, she has excessive femoral anteversion, which means she intoes quite badly. It was a doctor at the "fracture clinic" we saw. I am glad your ds is doing ok. Thanks!

My DS is hypermobile and has dyspraxia

He is now 12 and the main problem is with his knees - they bend the wrong way when he stands and cause his running to look rather unusual

His physio and OT advised swimming for him and he is now a great swimmer including Butterfly.

He sleeps with his legs bent in half

He also holds a pen with his thumb on top of his index finger but his drawings and handwriting are beautiful.

Good luck

THank you, I needed to hear that .

I have hypermobility (I'm 29). Was never a problem as a child - in fact it made me able to do "cool" things. It's only been a problem as an adult since developing an auto-immune condition of the joints - it's exacerbated by my hypermobility and as others say it means it's easier to over-extend certain joints and cause injury. I would actually go the other way and not actively encourage the over-stretching through gym etc as I'm sure my love of trampolining throughout my youth probably did the over-extending (and therefore my joints) no favours at all. I'm not for one minute suggesting you wrap her up in cotton wool, it's just if my DS has HM I won't be actively encouraging him to do gymnastics/trampolining, but if he wanted to, that's a different matter.

Thanks weegle. We think the hypermobility came from my mum, she has it and Lupus also. I just want my wee girl to be happy. I will take her to ballet and see if she likes that, as she has asked, but maybe forego the gymnastics, and I will get her swimming.

Hi mankyscotslass - sorry about the rather abrupt post earlier ... I had to dash out to a hospital appointment!

My sister has had problems with hypermobile joints since very early on ... and now spends much of her time in a wheelchair, as she dislocates very easily.

As a child, it was just thought that she was clumsy - and, with her having the hyermobile form of eds, it meant that she bruised rather easily - which led to my sister and I being on the "at risk" register for a while, as SS and HCPs didn't accept that she bruised incredibly easily.

She has problems with writing - her fingers dislocate when she writes for too long - and has never been able to do gymnastics or play ball sports, as there's too much possibility of her dislocating.

It wasn't until she was 16 that EDS was diagnosed with her - and by that time, she'd already had about 10 different lots of surgery to try to tighten various joints.

Having seen the problems it can cause, I'd recommend you try and get a referral to a rheumatologist - as EDS is a collagen disorder, and the rheumatologists seem to be the people who deal with it most.

The most emminent doc is Prof Bird some of his work here who is based up in Leeds - my sister was under treatment with him for a while, and has since handed over care to the rheumatologists in South Wales where we live.

Good luck. I'd also get dd to steer clear of the gymnastics - my sister has had fairly good results in terms of reducing dislocations when she has done exercise to tone and strengthen the muscles surrounding the worst affected joints... swimming is always a good one!

THanks for taking the time to post a reply. I think my dd is perhaps not as severe as your sister as she doesn't bruise too easily...only the ones to be expected when she falls over, nothing spectacular. I will amke an appointment to chat to my GP about it, as I am a bit concerned as ther is a strong history of autoimmune conditions in our family...on the maternal side Lupus and hyperthyroidism, and on the paternal side Psoriasis and PsA. I appreciate you taking the time to tell me your sisters story, and i hope there is more improvement.

My DS4 has hypermobility and also hypotonia (low muscle tone) the hypotonia is improving but he continues to be able to stick his toes in his ears.

His main problem at the moment is his feet. They bend over like seal flippers and the physio reckons if we can strengthen them up a bit he will walk (he's 2).

He has global developmental delay and no dx yet but the bendiness is his major symptom

my ds is 9 and was diagnosis at the hospital with this last year .i had to take him to the doctors a few times because he would wake in the night and scream the place down with painful knees and elbows.
i dont know about gymnastics but he is a great dancer.

Thank you both. I really don't know what to do for the best at all. Dh is all for waiting and seeing how things go, dd is only 3. I have agreed to wait a few months and see what her nursery teacher says.
We are also going to go down the swimming road, and get her and her terrified of getting his face wet big brother in the pool. I think we will still go ahead with the ballet at this stage , she loves the idea.
We have agreed to give it 3 months of nursery & classes and take it from there. She is my bonny wee princess, and always will be, I am just terrified for her and the potential for bullying. I got it bad enough for wearing glasses, being quiet and liking reading.
So three months to go then going back to the GP for referral once we have the nursery teachers opinion too. She is head of early years development at the school dd will go to.