Hypermobile

[Hypermedi]

My daughter has been to the walk in today as she hurt her knee yesterday

They said she has hypermobile knees and the tendons/ligaments (I'm not sure what she said as I wasn't there) behind the knee are not supporting them and she needs lots of physio. They've referred her to physio anyway but she already has a physio appointment on 8th Nov anyway as I'd been through the GP a while ago about her knees occasionally 'giving out' but no pain.

The doctor said she has a long road ahead and needs lots of physio and possibly other intervention? The doctor was able to completely move and dislocate her knees without my child even flinching apparently. I was looking after our other child so she was with her dad for the appointment so I feel a bit under informed. Does anyone have any experience of hypermobility to this degree and what we can expect? She's 7.

If you were to push me for an AIBU I'd say her dad is quite chilled about it all but I'm really concerned - she's not allowed to do anything but very small amounts of walking (no sports/park/soft play etc) for at least 6 weeks. AIBU to be concerned?

@Hypermedi If it helps, i'm hypermobile, so is my mum (9/10 on the scale) and neither of us have ever had the physio that everyone always says you need.

They're saying her tendons/ligaments (I don't know which and actually don't know the difference) are not supporting her knees at all or something like that and as she's now pulled one and its giving her pain it could be a long road of recovery. Its worrying she was able to completely dislocate both her knees without pain. She was able to move her kneecaps all the way to the sides of her legs 😔 no idea what that actually means but it seems awful for a growing child.

My dd is hypermoblie 9/9 on that scale. I'm presuming you mean she hyperextends both knees, so they flick back? Basically, from what I understand, in hypermoblie people the collagen, which is like elastic around the ligaments is too loose and therefore muscles and joints are not well supported. Does she also have flat feet, handwriting difficulties, a bit clumsy eg falling over a lot, dropping things, problems cutting up food nicely?

I'm hypermobile although not too badly. Physio, pilates and ballet make an amazing difference. They reduce the number of times I injure myself by making me stronger and more stable so I spend less time in pain. I wouldn't need it if I didn't like sports and outdoor activities though, because I'm not bad enough to break myself just from normal life, only if I try to run marathons or climb mountains. I wasn't diagnosed until I was in my 30s though and just assumed it was normal to hurt all the time when I was younger.

Have you scored her yourself?
https://www.ehlers-danlos.com/assessing-joint-hypermobility/

I too would be very concerned due to the association with other conditions, potential for future joint pain/issues etc. Maybe your DH didn't realise the impact it can really cause?

I’m hypermobile, I’ve been diagnosed with Ehler Danlos syndrome. As a teenager my kneecaps used to pop round the side of my legs frequently, I used to try and tape them in place every day as shown to by a physio. In the end I had keyhole surgery to cut a little groove into them so they stayed in place better. I have major issues with ligaments and tendons, constantly rupturing tendons. Have had to have surgery to have them stitched back together. Never found any help on the nhs, no doctor or physio is interested in trying to help me stay in one piece. I have spent a lot on private physios and osteopathy but not had great help from them either to be honest. Best thing I’ve found is weightlifting as the stronger I can keep my muscles it takes strain off my ligaments and tendons. It does sound like your Dd has found someone who is interested in being proactive about helping.

She doesn't appear to have flat feet, her handwriting is excellent, she is clumsy yes and does drop things a lot. She doesn't cut up her food really I tend to still do it for her when needed as I'm doing it for the younger child anyway.

My DD is very hypermobile and has this with her knees. Essentially she will be helper greatly by starting to do exercises that concentrate on stability around her major joints. It does work.

Unfortunately this was just a random doctor at the walk in centre who we'll never see again but at least she's put a referral in place. I'm also a great believer in weight lifting so I'll consider this for her in an age appropriate way. Thanks.

Yes, even just body weight type exercises stuff would help. With good technique! She will need to be careful with anything like Pilates or yoga as it’s possible to over extend, etc without realising. My osteopath said be careful as my lower back is already too hypermobile and he said the last thing I want to do is stretch more, make myself more mobile!

The main thing about hypermobility is preventing an injury. Once an ankle or other part is repeatedly and permanently injured then it's set for osteoarthritis and other problems in the future.
Good shoes mainly and plenty of exercise such as cycling, running is obviously not a good idea.
Physio can certainly help.
You don't have to wrap them in cotton wool but just be careful.
Hypermobility affects the whole body, or can affect the whole body and this can include the stomach so you often find stomach pain and difficulty digesting is a problem too.

And simple stuff like standing on one leg when brushing my teeth helps build up ankle strength.

I have hyper mobile knees - it's so good that it's been picked up now because with careful physio it will make a big difference. Mine was only picked up as an adult and I had already done a lot of damage. I have to wear orthotics in my shoes and be careful but the muscle strengthening exercises the physio gave me work really well.

Btw I'm not hyper mobile everywhere so it is possible that it's not every joint. The physio can do an assessment and let you know. My dislocating joints are my knees and my fingers. Fingers crossed she gets seen soon!

When younger my dd did ballet and gymnastics, although I ended up removing her from gymnastics as i didn't feel they were understating of her hypermoblity and were letting her over stretch. Ballet can be good, but again, make sure the ballet teacher knows what they are doing. My dd has found horse riding for core strength useful and swimming for overall strength. She is prone to injury with the swimming mind, especially shoulders but overall the benefits outweigh the risks I think.

The fact you don't think she has flat feet and she had nice handwriting is a positive. Perhaps her hypermobility is just affecting her knees? My dd did get diagnosed via the nhs as having EDS. All I can say is do not google too much or join any fb 'support groups'. It did me no good at all! She's 14 now and doing great, self managed pain via paracetamol, wears insoles and as clumsy as anything, otherwise you wouldn't really know. Plus she can do some great 'party tricks'!

My Daughter who is now university aged has hyper mobility in her joints. It first showed up aged 13 months and she was warned that any of her joints, including her spine could dislocate easily. It was a bit of a worry for me, as she was a very active tomboy. She had problems with her knees growing up, as the kneecap wouldn't track properly. It was a balancing act of resting enough when injured but also build up strength when she wasn't. She saw the physio who gave her exercises to do throughout the day. We had to liaise with school and college to allow her to do some of them whilst being seated in class.

She also regularly has issues with her shoulders subluxation or complete dislocation. She doesn't have the sensation of pain, that would usually stop from moving joints past their normal range of movement. By the time it's hurting, the joint is out of place. The physio is working on her ability to quickly engage her muscles to be protective. They are also trying to strengthen them as every time a joint is dislocated, it's damaging it and weakened the muscles. This makes it more likely to dislocate in the future.

It's definitely something you want to get good understanding about, so you know how to manage it. You need to know when it's appropriate to encourage her to do the correct exercises and know when she should be resting. It's likely to be something she's going to have to manage to live with, although there are cases where young children can develop/"grow out of it" but the tendency for lax joints will always be there. How much it's going to affect her while life is difficult to say, as it's variable from person to person. One thing we found was once she started periods, hormones affect how lax her joints are in her pelvis and legs.

Thanks for all the helpful info so far, its so detailed I really appreciate it. Does anyone claim DLA? The doc suggested this is something some people claim for their kids to pay for stuff that might not be able to do on the NHS with ease such as hydrotherapy.

both my DD's have hypermobility.. double jointed for those who are not sure.. they are both at 8 on the scale. Thye have both had physio throughout their lives, it doesn't do much, it just strengthens the muscles.

they know what they can and can't do.. its not something that gets better or goes away. its annoying and we have regular dislocations.. in later life they will probably suffer with OA but cest la vie

I suggest that when you speak to physios she is working with find out what you can do to strengthen the muscles around her knees at home. I'm hypermobile and when my body was strong I had far fewer issues. So I would find out what exercises they can suggest to build muscle knee strength to compensate for the hypermobility. And then work continuously at home with her to keep building that strength. Also, if you don't feel like the physio you get is good, switch because not all are well versed in hypermobility so make sure you request one who knows what they are talking about.

Hypermobility is usually to do with connective tissue disease like ehlers danlos. Worth joining some eds uk facebook pages

I’m hyper mobile and also dyspraxic. There’s often this comorbidity.

All my connective tissues are affected and I have had issues with pretty much all my joints now! It does mean I look much younger than I am though (stretchy skin) so it’s not all bad.

At the moment my main issues are hips and gums. I was in a wheelchair for about a year in my late thirties.

Lots of info online. Good luck.

I'm on the waiting list for ADHD and I suspect my daughter may also have it. I've just been reading about the links between adhd and hypermobility. I have checked though and I definitely don't have hypermobility.

I'm shamelessly commenting to placemark as DD1 (nearly 3.5yrs) is waiting on a physio referral for suspected hypermobility. She has been very flexible from the day she was born, clicky hips which had to have a scan to rule out any dysplasia, so clumsy, late to walk and her running is all over the shop. The HV came to see DD2 and DD1 was sat on the sofa with a big toe in each ear 🙈 So she did the referral there and then for me. Interesting to read some of the comments on this thread - she already does swimming and i was considering ballet as well, so sounds like that could be a good option for her.

I’m hypermobile. 9/9 on Beighton scale.

Apart from dislocating my knees twice in my life (which was no big deal), I’ve never had any issues. I find it helps to have good leg strength, as that seems to help stabilise my knees. So I run and do several spin classes a week.

As a child, I did gymnastics, ballet and all school sports with no problems. I used to ski every year too.

I do yoga now. Not surprisingly, I’m very good at it 😂

I wonder why the doc has told her not to run, jump, swim, do gymnastics etc for at least 6 weeks. Maybe because this time she's actually hurt a knee and they want to investigate it first? She's been referred through the fracture clinic apparently so we'll hear from them in the next couple of days so I'm told - likely straight to physio. I wonder if she needs a scan or xray just in case. I feel bad stopping her doing any exercise just now because I feel like this can't be doing her much good overall.