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 EDS type 3 ( benign) hyper-mobility that was diagnosed finally in my 40's, and explained SO much for my medical history.

I am resisitant to anaesthetic , and have weird pain receptors, bruise easily and have poor balance. I am hyper mobile in my hips, sacrum, shoulders , wrists, fingers, ankles, knees plus I have multiple bursas , arthritis and flat feet. Until recently my hips would regularly sublex, as would my shoulders often trapping nerves in the process.

There is a difference between having a couple of hyper mobile joints and the systemic variety of hypermobility. You may need clarity as to what category your daughter falls into.

It's not about flexibility though , it's about joint stability, and I'm not sure if different terrains are a good idea - it certainly isn't for me, the potential to roll an ankle or a hip to go rogue, for me is far too risky.
Standing on tiptoes and slowly lowering your feet to flat , rinse and repeat is great. I do this in any kind of queue I find myself in.

Things that might be useful for you to know for her in the future-

• high impact exercise is the devil - worse as you are older but a lot of the damage is done when you are younger.
• yoga is also the devil unless your instructor is incredibly well trained and used to dealing with hypermobile clients.
• only ever use exercise physiologists in the gym, never just personal trainers
• try to avoid putting on excess weight - it makes it harder for your joints
• pilates and constant physio to strengthen muscles around the joints and take stress off ligaments helps enormously. There's a wee girl of 8 at my Pilates studio who is hypermobile and it has helped her a lot according to her mama.
• never go barefoot when it can be avoided, don't wear flip flops or sandals without arch support.
• tumeric is fantastic as a non-chemical anti-inflammatory to reduce pain
• avoiding nightshades ( tomato, capsicum, eggplant and chilli) helps reduce the joint inflammations as does avoiding sugar.

Good luck, but if you can build her surrounding muscles up now and continue - she won't be in the situation I am in now later in life.

I don't think either of my children have HMS, though mine was only diagnosed in my late 30s because of confounding factors - my muscles are mostly over-tight so it looks like I score 0 on the Brighton scale, until someone looks carefully at what the joints are doing. And I have no sense of balance, so the rising to tiptoes recommended upthread led to me rupturing an Achilles tendon and no end of problems.

Ds does have ASD and poor proprioception, but seems to be no more than usually bendy. Dd may have ASD though equally could be just copying her whole family...

My granddaughter aged 9
She’s like a little squirrel monkey hanging about, climbing etc but tires really quickly

I’m hyper mobile. I’ve got a double jointed spine and hyper mobile joints. I’m penn toed and I have had chronic sciatica. My physio also linked things like deep stretch marks as a teenager to my hyper mobility because my collagen is weaker.

I do get fatigued easily but I’m generally fine. My immune system is crap though. Never realised there was a link before.

I was hypermobile but arthritis and age has out paid to that. My sis was also HM when younger, again age and arthritis got in the way. Now it's very apparent my dd is also HM and has a lot of issues to do with it including digestive issues.

Interesting thread. Ive had 2 hernias under the age of 10 & my ankles do tend to roll if I don’t wear supportive shoes. Presumed this was because I did a lot of dancing in my youth. I found dancing very easy & am very well coordinated.

Just thinking about the hereditary aspects how do you spot it in a toddler? My dc2 is incredibly clumsy, very bendy & quite floppy when I think about it.

All children are hyper mobile - it's normal. It's only when there is pain, specific muscle weakness or motor control issues that it can sometimes become a problem. Treatment is strengthening through activity like swimming / resistance work ideally eg plahdoh/ putty, and gross motor play eg climbing frames, scramble nets, running etc etc.
Physio and OT should have handouts to give you on paed hypermobility which explains all this?

I was diagnosed with EDS (hypermobility type) (aged 56) by a rheumatologist at the London Orthopaedic Hospital, who suspected DD had it. We were both diagnosed with it at the same appointment in a sort or medical Bogof deal).

As a child I was always exhausted and remember DM begging me not to go to bed so early. I walked late, bum shuffled instead of crawled and had lots of wrist, ankle and neck pain and tendinitis. I’m always covered in bruises and local anaesthetic and oral painkillers have very little effect. My muscles always feel ‘tired’ and sore, like I’ve done too much exercise. DD had less problems as a child than I did but actually has far more bendiness and hand and back problems as an adult than me. It was a relief to finally get a diagnosis as no one had ever been able to link all the weird and wonderful things I have. Both our heart checks came back normal thankfully but both of us get a lot of pain in various joints/muscles. I’d say physio and orthotics and learning how to look after your joints from as young an age as possible would be very helpful. Also making sure the muscles around joints are as strong as possible. No gymnastics, yoga or anything that encourages stretching as hypermobile joints have an unnatural range of movement and can easily over extend. Mention to anyone giving dental or other anaesthesia/painkillers that she has it (if she gets a formal diagnosis) as they may need use different drugs or more local anaesthetic than usual. I need an elephant size LA before anything goes numb.

Both DD and I are diagnosed HMS

DD struggled in early teens with frequent dislocations, especially her knees. Many physio appointments etc. She also dislocated a shoulder which unfortunately trapped a nerve on its return resulting in a paralysis of her arm which was an utter nightmare for almost a year.

She's early twenties now and has stabilised a lot. She still gets joint pain but dislocations are less frequent.

I was diagnosed at the same time as DD having always had joint issues. My 20's through to my 40's were pretty uneventful and aside from occasional pain It was nothing major. Early 40's I began to notice weaknesses and dull throbbing pains in different joints. I was also knackered constantly. This has steadily gotten worse in cold weather and all joints can be an issue with aches and pains, though fortunately I only really dislocate my fingers which are easy enough to pop back in.

Its a funny condition. Tends to affect in stages from my experience then go away for a few years, though I suspect it's staying with me now.

CommanderDaisy I agree with everything you say. It’s definitely thnot instability that causes me more problems than flexibility. I have to wear shoes that support my ankles or I go over on them. Every joint feels sort of loose like they haven’t been properly put together. I have no confidence that things I’ll stay where they are supposed to. A diagnosis in childhood would have hopefully addressed many of these things though. It’s just carrying on as if everything is standard that I think does a lot of damage.

Also - all children are not hyper mobile. That's simply natural youth based flexibility. Hypermobility is a different beastie completely.
TheHamsters

Frozenteatowel - get yourself to a reformer based Pilates studio with a very experienced rehab based instructor. Age is no object in that space. It's given me back the ability to walk properly without being dumped on the ground by a hip sublexing or an ankle rolling. I feel secure walking down stairs now - whereas before I was known for sitting down an sliding down on my arse if it was a bad day.
I have my mutant levels of flexibility back, but it's controlled and while I will never not be in pain, and have times when only massive amounts of pain killers can help - my life is a million times better than when I started 18 months ago.

Hi OP

It’s good that you’re looking into things early with your DD ❤️❤️

My daughter was diagnosed with Ehlers Danlos Syndrome type III and PoTs three years ago.

17 now, but was a high level gymnast till 14, when the fatigue, palpitations, dislocations & skin tears really kicked in.

I’m currently in the lounge with her - she’s on the floor having taken codeine and waiting for it to work so she can get her hip back in.

We had useless brush offs from medics for years until we finally found the right specialists.

Do message me if you’d like more info x

CommanderDaisy - very good to hear that you have improvement.

We have just found DD an EDS Physio - hoping that she can help with strengthening to limit subluxes

I’m hyper mobile as are both my dds.

I was an amazing at figure skating though but only ever had two bowl movements a month, could skew for 12hours but still be tired. All my joints click and pop around the place, if I stand for too long my back throbs once I lay down like a painful pulse. My eating is very disorganised I either eat it all and binge or I’m just not hungry and could go without for a whole day.

My oldest dd was/is very clumsy, she gets sore joints, hospital at one point where prepping her for surgery but decided to see how she goes. She’s an amazing swimming but again could skew for days and still be meh.

My youngest dd is too young to work out what’s symptoms and what’s her being a little child.

Funnily enough my ankles roll a lot and I resort to tip toe walking a lot without even reading. My father mentioned how me and both dds have one foot that turns in like club foot but not continuously or at a set angle it’s like it just doesn’t know what to do.

Oh god yes the shiteness of painkillers having sod all effect!

Add to that people not believing - kids in particular can be really cruel, dd had many years of kids at school accusing her of "faking" because you can't "see" pain (I could see it in her face and how she was walking etc) not just kids either - took several years and me showing a photo of my dds knee severely swollen and bruised following PE teacher telling her to "push through" despite my giving the school a copy of a consultants letter stating she was to stop physical activity if experiencing pain!

I basically - very calmly, quietly - lost my shit with said pe teacher - "look what your actions have done to my dd!"

She was very apologetic & from that point did actually take on board how dd was, but I think she sensed I was about to lose it big style with them.

One of dds close friends once sprained an ankle and complained a lot - dd lost patience eventually and said "try living with that every couple of weeks!" This friend has since become one of dds "great defenders" dd is used to people not understanding and being dismissive - friend is the one that says to arseholes - "do you know this girl is in some level of pain every single day yet rarely complains, has had to give up dancing and gymnastics, can't ice skate, can't wear certain shoes and clothes, has been hospitalised 4 times because of her disability and yet she cracks on and helps others, goes to work, doesn't moan about the stuff she missed out on - and you dare to take the piss?! You try living her life you wouldn't last 5 mins!"

My ds has hypermobility and was diagnosed with mitochondrial disease at 10. He has lots of other symptoms. Take a look at these websites www.mitoaction.org/ and www.umdf.org/ to keep an eye out for other symptoms that your dd may have...the excessive tiredness is a big red flag...my ds would fall asleep eating at that age and slept 12-14 hours a day. He is now 18 and has a variety of issues at various stages of treatment. He is living a fairly normal life, but definitely needs accommodations (like he is in college part time) and needs several weeks recovery time for any sort of cold or illness.

The upside of hypermobility is that ds never broke anything (despite a really good try at it...constantly falling down stairs and tripping over things and falling off his skateboard, etc.)

P.S. Other issues that go with it are weak eye muscles, so keep an eye out for late reading skills (not from an intellectual point of view, but just sheer exhaustion keeping eyes focused); and dysgraphia (ds still has chicken scratch handwriting and has been typing his schoolwork since he was 6).

All children are hyper mobile - it's normal. No they're not and no it isn't.

DD has EDS. Like many other eds children, she loved ballet and gymnastics when younger but constant dislocations put a stop to that. She has occasions when the pain in too much and she needs to use a wheelchair. She, like so many others, is a frequent flyer in A&E and knows most of the staff by first name. The joint she has most pain with is her jaw, she has had hundreds of dislocations there and recently had her 4th jaw surgery.