Hyper mobility, does your child have this?

[Solongtoshort]

I have just gotten in from a very very long day, Doctors, physio and then work. 5 minute turn around at home and then an 2 hour round trip to my mums as she suggested the kids stay at her house tonight till Saturday in front of them yesterday to give FIL a break from having them as they have broke up from school........any how l will stop waffling.

This morning this (hyper mobility) was talked about a lot and l haven't had time to google it yet, so instead of googling it, l thought l would ask all of you for real experiences of having a child with this flexibility.

My dd is 3 and falls over a lot and the physio said she can't remember the last time she seen a child so flexiable. She has insoles for her boots which we got th strengthen her ankles and roles in with her feet.

Just going for a shower so won't be back for a while.

i have hyper mobile elbows, didn’t know until a yoga teacher spotted it. Basically if doing anything that involves weight on my arms eg downward dog, press ups, etc my elbows naturally turn so the inside elbow faces forward if that makes sense. She told me to make sure I turn them the right way so the inside faces the body. This is important as the weight is taken by the joint & not the muscle & explains why I struggled to get any arm definition!

yes all 3 of my kids have it.
all fine just poor motor skills but ok

not sure how to treat it in a child apart from making her aware of her body as she gets older & to shift into the correct alignment.

it can also cause digestive and bladder issues if it's extreme. my dsd has problems eating even only tiny amounts - plenty to read into.

I was a hyper mobile child. I'm now 59 and crippled with arthritis and tendonitis

Hypermobility is not just about being flexible, you get tired quicker as your body has to work harder to stabilise itself. You are also more prone to dislexia and there some links with eating disorders (one theory about this is that the brain finds it more difficult to locate itself in space).
It runs in my family and we all get lower back pain and suffered terrible PGP when pregnant.
I’m hyper mobile in my si joint which means I have to be very careful with exercise, I have to do stabilising exercises every day and I get awful pain in my legs and back if I sit too long or stretch too much.

Three of my four have hypermobility.
One was severely delayed with walking and all motor milestones , but also has special needs (autism and learning disability) He is much better as a young adult although he wears afos (splints) on his legs.

Two are bright able young women, who as children were extremely hypermobile but met their milestones fine, just needed orthotics for their pronating feet.

However..as young adults both were diagnosed with Ehlers Danlos Syndrome. They have suffered literally hundreds of dislocations of joints, and the fatigue and pain that goes with it.One also has heart problems, gut problems (and may have to have a feeding tube fitted..a gastrostomy) if they can't maintain her weight (she's very thin as can't eat much)

So they can end up fine. But sometimes it is part of a bigger problem.

Ds has it. Mainly in his hands. He is 11 and his handwriting is still awful. His hands hurt when we writes and he struggles to get the correct pressure from pen to paper. He uses a laptop at school now which helps.

I'm hypermobile essentially my connective tissues muscle, ligaments & skin are more stretchy than normal.
You can me hypermobile in some areas but not in others and it affects people to various degrees, bad points are: I have constant joint pain ( I need to get fitter then my joints will be better stabilized), your more prone to heart valve issues, some people end up disabled due to joint issues.

Positives: All my labours were fairly quick. I'd make a great gymnast/contortionist if I'd trained to be one.
Yoga poses are often easy but means you can dance joints by over flexing.

I would make sure your daughter keeps very fit with low impact sports so her joints are well supported.

I have hypermobility. I'm more prone to falls and injuries, especially dislocations but exercise helps as well as a generally healthy lifestyle. I get tired more easily and struggle with coordination so tend to appear quite clumsy. It hasn't really stopped me doing anything aside from being advised go avoid activities such as ice skating. I'm married, have a baby, drive (although it took me a while to pass my test) and have a good job.

Hyper mobility isn't just about being flexible.

My DD, now an Adult has always had to pace herself, because of tiredness which then lowers her immune system.

She's had joint pain and other issues because of it.

Doing everything that was recommended for her, did improve her balance etc and fine motor skills.

Her spatial awareness is now good.

I’m hypermobile. I had Congenital Hip Displasia at birth but was undiagnosed until almost aged 4.
As a child I was just bendy. I’m 24 now and most of my joints are painful and can feel very weak.

DD is hypermobile and also has dyslexia and dyspraxia. She has a lot of joint pain and used to have a party trick of dislocating her shoulder until a physio told her to stop.

I have EDS, diagnosed by a paeds rheumatologist in edinburgh specialising in it after I broke my neck as a child and had so so many torn ligaments and dislocations later on. I also have the heart defect that comes with it

I’m now mid twenties, training to be a doctor and haven’t had any problems for years. I know I’ll need neck surgery one day and I need an ankle bone fusion because that gave way years ago and I just need to get it sorted but I’m honestly in very little pain and it doesn’t cause me any worry. Day to day my life is entirely normal.

It can sometimes be useful to know, but hypermobility in itself is not a diagnosis, it’s a sign. so it can be something but in the vast majority of the population it means very little. Most of us tighten up as we age anyway!

Thank you all, some of some of what l have read reflects in my dd. She complains she is tired after only being a wake 3 hours. She complains her legs/arms are sore all the time l just thought she was after being carried ( such a cruel Mum).

Since our first appointment a month ago when they didn't mention this, she has better footwear and we have been doing things to strengthen his muscles for example we take her walking a lot on different terrains and more soft play, we do a lot of standing on top toes and l think she is filling less, she still stops when she walks though.

I am off to have a google now. Thanks again.

DD1 was diagnosed with hypermobility at 6 and for years had nothing but flat feet and weak ankles. Unfortunately her bowel is also affected and because it stretches abnormally she doesn't get a signal that she needs the loo until a backlog has built up. She goes about once a week unless she regularly takes laxatives. She takes anti spasmodic medication for cramps and very recently has started to suffer from joint pain in her ankles and wrists. She's 15 now and wants to be a surgeon, she does suffer from fatigue but she is very proactive in managing it by getting plenty of sleep and staying hydrated etc.
It doesn't hinder her much right now and she's a fairly normal teen aside from drinking a huge amount of camomile tea

I was diagnosed with hypermobility when I was about 8, spent years in and out of osteo, physio, consultants offices and the like all through my teen years.
I was diagnosed with EDS at 30 when pregnant by a team of geneticists, took my mum with me and she was diagnosed at 58. My dd is 8 and shares the same diagnosis.
I suggest you do a shit tonne of reading. Hypermobilty is an indicator of many other potential interesting conundrums.
Read up on excessive fatigue, executive function, dyspraxia, etc. Watch out for unexpected pain levels in unusual situations. Believe your dd if she tells you something is painful. We are not clumsy, just working from a difficult starting point.
Also bear in mind that this could mean nothing at all. We are all different. But being armed with the knowledge of such things will put you in a better position to be your daughters advocate, should you need to be.
I should add that I hold down a good job, have a family and generally am invisibly disabled. Zebras (people with EDS, hEDS) are a resilient bunch.
Good luck, don’t fret, fight for your daughter and be a stellar advocate every step of the way.

A team of geneticists did NOT make me pregnant! Really must proof read before posting! Anyway....

I'm hypermobile. I live a very normal life, though I have wondered if I have a mild form of EDS as it would fit (eg I bruise very easily; I remember teachers at primary school asking why I had so many though I didn't understand why they were asking at the time!). I do wonder if it's linked to my scoliosis (corrected with surgery).

I've been to uni, work full time in a professional job, have done everything from skiing to skydiving and you wouldn't know anything was different to look at me (though I'm slightly wonky when starkers!)

I have EDS. I have twin dds with EDS and ds who is hyper mobile. At sixty I have bowel problems and arthritis. One twin is a wheelchair user and the other is headed that way, she has heart problems, gastrointestinal problems and has subluxed/dislocated so frequently that A&E know her by her given name. DS has gastrointestinal problems and severe pain.

I have EDS type III, now known as hEDS. DD has hypermobility syndrome. They are thought to be the same thing by some researchers. hEDS is hereditary and there is a fifty percent chance of passing it on. When passed on it tends to have worse manifestation in girls than boys.

There is a seven fold increase in the chance of autism in hEDS patients. There is also an increase in the risk of asthma and allergies and lots of other things.

We both have joint pain on walking, bladder and bowel issues, I have heartburn. Dad had hernias a lot. Résistant to local anaesthetic, fall a lot, poor balance, proprioception sucks. (Position of the body in space) bruise easily, wound healing is slow. (Diet may help that, need to go back and read the research)

Vitamin d levels may be low.

I am trying to find out how to manage my own condition and have done a lot of reading.

Yes, all but one of my children do thanks to DH who also does. It's actually benefited them greatly, most of my daughters have been beautiful dancers and figure skaters with one dd still dancing ballet professionally at 24 and Ds1 was a fantastic nationally ranked swimmer, especially in butterfly. The only issue is that they suffer a lot of dislocations, especially in the shoulders, buy they now know how to pop most of them back in by themselves without too much pain.

Me and dd are hyper mobile. Also wondering about EDS too which has hyper-mobility as a symptom but is so often missed

Me, DH and all 5 of our dc have hypermobility. It can vary a lot. Some people can be just a bit bendy and others will need wheelchairs like my 2nd and 4th dc.

My dd has hEds supposedly although myself and Drs starting to think it may be another condition with similar symptoms, but some other things too.

It's NOT just hypermobile joints, that's just the symptom that tends to be most obvious.

People with hypermobility disorders can experience a wide range of symptoms, they're more vulnerable to certain types of infections.

I'm an ex nurse and I've still found it a HUGE learning curve.

Dd has sprained/twisted all her joints, suffered numerous dislocations, skin splits, excessive bruising, problems with digestive system, gynae problems (ongoing can't get bloody GP to listen that this is a thing with hypermobile/EDS patients - they seem to have very little knowledge in this area!), urinary tract issues, respiratory problems, infections that in people without this are barely even noticed have hospitalised her on 3 occasions now.

Constant pain and fatigue, eye strain (she was born with a 'lazy eye' and sprained ankle yet we didn't get a dx until she was nearly at high school).

She had to give up dancing & gymnastics which broke her heart but it had got to the point where every week another injury.

Don't beat yourself up - I felt awful when we got the Dx, I'd been blaming her for being "clumsy", not taking care at gymnastics and going through shoes even really sturdy ones at a rate of knots! (She pronates due to flat feet). It got to the point we knew the X-Ray techs at local hospital by name! Hell I knew their kids names!

"Hypermobilty is an indicator of many other potential interesting conundrums." So true. I was initially relieved when we got a dx. As times gone on and dd has had more issues, plus reading up and noticing certain other things I'm very concerned it may actually be a far more serious condition.

All of which is not helped by the fact she may well be the most stoic, stubborn little cuss I know! If she tells me she's "a bit sore" in dd speak that's like an 8/10 on most people's pain scale! Fine when talking to me as I know what she's like, but it leads to Drs being even more dismissive than they are anyway cos she's not being bloody honest with them about how much pain she's in!