to think hyper mobility doesn’t just start at 12 years old?

[OhSOconfused123]

My daughter is having a real struggle with feeling her ankles constantly need clicking back into place.
It doesn’t matter if she’s walking or not, even sitting down the teacher has noticed her bending her feet over to the side trying to “ click them into place “
This has been going on only for 2 weeks and the doctor wasn’t concerned but referred her to physio.
Surely this doesn’t just start at this age?
She doesnt do any taxing sports; just tennis once a week but is fit and active etc.
Very worried about her constantly bending her feet over to the side in case she actually breaks something soon

That bastard progesterone making one extra stretchy. It may ease off after puberty when hormones settle down. Until menopause. Bastard menopause

Oh and my HSD was not diagnosed until nearly 50

A decrease in muscle strength as a result of a reduction in physical activity - such as two years more or less in lockdown - can make symptoms far worse/appear noticeably for the first time, especially when combined with growth spurts.

Straight after the first lockdown, it was shocking how many kids came back not just thinking they were going to die if they got out of breath, but unable to stand straight, sit straight or walk without their feet/ankles/shins/legs/hips/back hurting or popping, worsened by the sort of shoes some of them were wearing (no support, single straps, no cushioning).

There's a good chance that your DD overpronates - her foot collapses inwards under weight - which puts too much of a stretch into weakened muscles, tendons and ligaments.

Something that does help whilst muscles in the core, upper thighs and lower leg/foot is getting arch supports/orthoses - custom ones would be the best and, as you have been able to pay for a private consultation, perhaps it would be something else you could purchase?

Add in the exercises you'll be told about, good trainers (ones where the insole comes out so you can put the orthotics in) and good shoes (again, where you can put in a separate set of orthotics - they never remember to change them over after PE) which may need to be a size larger to allow for the loss of space - and she will be able to at least strengthen and stabilise her joints more.

tl;dr It does start at age 12, but it can become noticeable for the first time at that age, especially when you add lockdowns into the equation.

My daughter was diagnosed at 4 due to a and e injury and being admitted and the doctor on duty noticing it - I had been in and out of hospital with her weird behaviour of running on her knees and not walking and I was told repeatedly that I was a nervous first time mum and she was a lazy baby. She wasn’t she had severe hyper mobility which no one had picked up on despite multiple dislocations etc it can be missed. Without that doctor I doubt she would have diagnosed .

@Anomalocaris

It absolutely can suddenly come on or worsen at about that age, strong links between connective tissue problems and female hormones so it's often worse at puberty and then perimeno.

Absolutely this. Had my first dislocations just before my periods started. Had no dislocations at all when pregnant, or until periods came back post natally. I'm now peri-menopausal and my knees and hips go out more than I do!

I'm hypermobile. Growing up it was dismissed as growing pains. Really kicked in when I started my periods and diagnosed at 19. The few days leading up to a period I'm mega prone to injury and now I've started the monopause slide can never predict it. Pain in the arse it is.

Progesterone sucks a bit.

My hypermobility issues started around that age!

My DS was only diagnosed last year with hypermobility when he was 16, then earlier this year he was diagnosed with POTs. Both were picked up by the Long Covid clinic.

Chatting to the rheumatologist it would appear i'm hypermobile to a lesser extent. That explains the years of dislocating toes!

Mine started at 6, kep collapsing running, but got progressively worse in my teens. Having had a baby at 33, was referred to a podiatrist due to foot drop. He's done me custom inners oles due to my hyper mobility and they are so much better than the shop ones. They actually support my arch, my ankles roll so much less, knee pain reduced and hip pain less. See what the physio says and possibly consider podiatrist too

Have you tried this test on her to see what she scores?
www.ehlers-danlos.com/assessing-joint-hypermobility/

I started at about 8 or 9. For me it manifested in knee pain, sometimes so severe that I’d tie my dressing gown cord around my thigh so tightly it would cut off the circulation. I had frequent x rays, but despite other signs like a curved spine I was told it was growing pains.

By the time I was mid twenties I struggled with other joints. My GP was crap and basically blamed pulled muscles and anything else he could think of. I stopped going.

In my late 30s my DD had an accident, it was quite nasty and resulted in the temporary paralysis of her arm from a dislocation trapping the nerve. Her rheumatologist took one look at me and said “of course she’s inherited it from you”. This was the first anyone had mentioned the possibility and a light bulb went off.

Late 40s and finally diagnosed EDS Type II and it worsened slightly into peri menopause. It’s calmed again now I’m on patches so I can absolutely see hormones playing a part.

Is there a link to ADHD?

Mine started causing real issues and needed refferals to biomechanics and physio when I was in year 7 at school, so around 12. No one had noticed before then.

@OhSOconfused123

Is there a link to ADHD?

I know there appears to be a link between asd and hyper mobility so I suspect somewhere there is a link but I'm not sure if medically proven or just known iyswim?

As far as I’m aware, there’s no link to ADHD.

I’ve just never seen anything done on so suddenly.
It’s awful at the minute, even walking a few paces and she’s stopping to “ click “ the ankle back into place
No injury historically or anything
I’ve found a private physio to see her Tuesday before she returns to school

As with many others here, I developed lots of joint problems when I hit puberty. I had been born with mild hip dysplasia and during my teen years I frequently couldn't walk/bear weight because my hips were so painful. I had so many x-rays and just repeatedly got told it was all growing pains.
I am now experiencing issues again and am in peri-menopause.

My youngest DS has a limb condition, which often goes alongside being hypermobile. At his most recent clinical review his Consultant observed that he has inherited this from me - and like another poster here, it's the first time a medical professional has ever suggested that my issues are due to hypermobility. My eldest DS is very clearly hypermobile - he's like a human pretzel.

And with ref to your query about ADHD - my GP won't refer me as he says there is no point but agrees that I meet the criteria for ADD as I don't have the hyperactive part.

Just another thought if she doesn't seem overly flexible it could be a form of OCD

I’ve just never seen anything done on so suddenly.
It’s awful at the minute, even walking a few paces and she’s stopping to “ click “ the ankle back into place

Did the GP examine her ankles? Did they think her ankles felt unusual or over-flexible?

The fact that it's sudden and severe and in both ankles makes me wonder if there is maybe a chance it could be more of a psychological thing - like an OCD type behaviour, perhaps? I went through a fairly long period, in my early teens, of feeling a really intense compulsion to click my knuckles all the time - I was convinced that somehow they were slightly out of place and needed to be corrected. It was a conviction that appeared pretty much overnight.

To cut a long story short, there was nothing physically wrong with me; it was entirely psychological.

The GP couldn’t see anything untoward but noticed the clear discomfort as she walked around the room.
I did wonder if it was just a habit or OCD type behaviour but she’s clearly in pain when she is unable to “ click “ the ankle into place

My DD'S friend has just been diagnosed with Ehlers Danlos at 22. She has other diagnosis, Autism/ADHD. My GC have hyper mobility she has dyspraxia. It is more common with another diagnosis. It might not be though, which is why she needs to see a physio.

Your daughter needs blood tests to rule out hypermobility. You're right, you don't just get it, you're born with it. I have it & it was discovered in my 30s. My GP run blood tests & referred me to a rheumatologist.

I’ll request a blood test tomorrow - this wasn’t mentioned at all in the GP appts

I’ve had it all my life but it did her particularly bad at 13 because of all the fast growing, hormones etc. I think the progesterone rise is responsible for elastin which for a hyper mobile person makes it so much worse. I had juvenile arthritis in my ankles at 13.

I’d recommend seeing a private podiatrist. I’m hyper mobile and developed extreme heel pain and ankle soreness a couple of years ago. Wearing insoles has made a massive difference plus endless stretching.

Getting a gait analysis could be really helpful.

Look at the 2017 criteria for Elhers Danlos Syndrome.

I've just been diagnosed at age 30. Suffered horrendously as a child.