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?

The doctor was the first to mention this to us, it's not a thought I'd previously had. She said it could pay for extra physio or save up even over her lifetime and pay for joint replacements in the future so she doesn't have to face NHS wait times. Or pay for everything people has suggested such as yoga classes, weights etc etc. We couldn't afford all of this extra stuff and why should we when we may have another option available. I wouldn't just claim anything for the sake of claiming it.

This is my 8 year old!

Sorry to jump on someone else’s thread - could this be the cause of reflux in a child?

My child has an umbilical hernia which is related. But no reflux.

Yes definitely. Dd has reflux and a hiatus hernia.

I know for pip you have to be quite bad, ie need assistance with daily stuff such as washing, dressing, food prep. No idea if dla claims are as stringent or less so. But for pip you wouldn’t get it just to pay for physio or to save up for joint replacements in the future.

I’ve actually no idea if joint replacements are more likely? The joint isn’t the problem and I don’t think me having an ankle replacement would help my ankle pain as I’d still have the same tendons and ligaments and it’s them which are causing the pain

And to be honest I don’t think spending money on a physio, etc long term is worth it though I’m sure they’d happily take your money. I wasted money on a private physio for months going most weeks. They’ll do a bit of ultrasound or maybe some hands on tissue massage but it’s the at home regular exercises which will help. Physios, etc have done bugger all. though a good one should be able to recommend and demonstrate good exercises. But once you have them you can just do them.

swimming at the local leisure centre is effective. I spend a lot of time doing body weight exercise videos on YouTube for free

I am hypermobile as part of having Ehlers Danlos syndrome (Classical type)

many people without EDS are hyper-mobile and often it doesn’t really impact them. Some have issues with many joints . There is no cure for either EDS or hypermobility alone. The main thing is to get the muscles around joints as strong as possible to help support them.

My problem is I wasn’t diagnosed till my 40s and ended up with osteoarthritis , tendonosis and other joint damage. The best thing for your DD is for her to get a proper diagnosis of hypermobility and checking to make sure she doesn’t have EDS (look up the diagnostic criteria for hypermobility type and classical type which are the two commonest forms. If you suspect she might have EDS, then it’s a rheumatologist that is able to diagnose it. The most recent diagnostic criteria are very precise in order for an EDS diagnosis. Hypermobility spectrum disorder is much more common.

Either way I’d get a referral for a diagnosis and depending on the results, she will have access to physio, occupational therapy to advise on injury prevention, muscle strength and what sports and activities are of benefit and which are best avoided. Prevention and protection of injury to the joints from a young an age as possible is really important and will really make a difference in the future.

Best thing I’ve found is weightlifting as the stronger I can keep my muscles it takes strain off my ligaments and tendons

Same here. Wish I'd started earlier.

I also do the Tom Morrison mobility training. It's the business for keeping you strong in all the right places and niggle free as long as you keep it up.

There are also full body straps that support your whole body I've seen advertised. They do look comfortable in a weird way.

I wouldn't have jumped to DLA though but it's worth a shot. Exercise doesn't have to cost a lot, but exercise is essential for EDS, despite all the take it easy or go swimming crap HCPs come out with. Rest as much as possible is crap advice

To clear up the DLA thing... you claim DLA for a child (or PIP for an Adult / AA for a pensioner) if they cannot so the things that other people their age can do and therefore need assistance.

For a child these are care such as washing/dressing/toileting/self care, feeding, supervision, and Mobility - walking but also navigating the world around them.

A hypermobile child might get DLA if for example they are incontinent because the stomach/bowel area muscles are affected, can't walk because their hips/knees/feet are affected. But it is all compared to a normal child their age. So you wouldn't get DLA because a 1yr old can't feed themselves using a knife and fork - but you would if it was a 10yr old who can't lift the spoon - or a 1yr old who needed peg feeding. It is (dis)ability based not diagnosis based.

Thank you that makes sense, as it stands she is temporarily limited but hopefully not long term. But the doctor says her knees are severe and need urgent attention.