Hypermobile

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.

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

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.

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 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

Yes definitely. Dd has reflux and a hiatus hernia.

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

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

This is my 8 year old!

My daughter has this and was a few years before we received a diagnosis, by this time was in a wheelchair, I was so worried. She also has flat feet and clumsy, she had to wear specially made inserts in her shoes although as she's now an adult she can wear normal shoes. She was diagnosed at Great Ormond Street and was an in patient on the rheumatology ward. She is so much better when she does exercise and feels so much stronger. It can be variable as she can overdo it but seems to now know her limits. She does have a weakness with her back though. It has definitely improved as she's aged. Good luck. By the way I did apply for some benefit when she was younger and Great Ormond Street suggested it, as I am a non driver and was having to taxi everywhere. I also went part time at work to help her. She had counselling with pain management.

I’m hypermobile, diagnosed hypermobility syndrome, and live in constant pain. I need a lot of physio but the NHS service near me is pretty useless.

What you have to know is that only a percentage of people who are hypermobile will develop hypermobility syndrome, and only a percentage of them will develop extreme pain/fatigue.

My advice is to get her stabilising her joints now - weight training with guided weights in a gym, yoga, and swimming are the best in my opinion. Also a low inflammation diet.

Yes I'm hyper mobile just turned 50 and recently been diagnosed with with osteoarthritis in my knees the right being the worst. This is the one that dislocates the most.
I only got diagnosed mid 30's but obvious from a very young age I was hype mobile . My eldest ds has it bit my youngest has bypassed it luckily

This is what I cannot understand ever..Oh I have x condition, what can I claim and how much is it worth to me? It blows my mind. Who exactly do you expect to pay , and why should they? I cannot cope with this level of thinking I really can't..

Have to say I agree with @itsjustbiology . I think DLA and similar benefits should be for people with a real need. I know someone with EDS who somehow has managed to get PIP which she says she uses for physio and a cleaner. She earns 60k a year, has plenty of money for a nice new car, holidays, etc. She does not need this money, the taxpayer is paying her £700 a month and most of those taxpayers will be earning less than what she does.

If your dd needs physio, etc it should be available on the nhs. Sorry if that sounds harsh and I accept some people will feel very differently.

The PIP person I know told me to claim for it as well. I haven't looked into it.

Sorry if it sounded harsh. The reason I wouldn't do that is purely its my child,with a relatively common condition that although annoying and painful at times and very inconvenient at times it doesn;t stop her more than temporarily living a full life. She goes to school and has a fantastic social life and although I am very greatful for the support of physio's and school (especially the PE dept) I do not consider it to be anyone's problem but ours. I know I sound a right cow but I feel really stongly on this that DLA and the taxes people have to pay to enable this benefit to exist, should be saved and spent for people who have severe constraints on their lives with life limiting conditions or people who really need constant support. Swimming will do the same as hydrotherapy I am sure if you ask the physio's. Our local hospital has a hydrotherapy suite and its available to anyone who the dept thinks would benefit from it as part of their treatment programme for free. This condition can be managed,yes it will be different for every patient and its tough going but that doesn;t mean there should be a financial element to handle it. My daughter has Severe hypermobility,Severs disease and Osgoods schlaters disease all bundled together! Shes off to school on monday and will pop her knees back in when they fall out!!! Sorry if I sound a preachy cow , if she has to have an op when she is older she will and she will just have to carry on ! Apparently 1 in 10 people suffer from some of this so it really is common.

My daughter is hyper mobile with Eds she benefitted from hydrotherapy and exercise at home to build her muscles and strength up. It's made a huge amount of difference in her ability to not be I. Pain after an hour walking. Her joints are either too loose in the summer or lock up when it's cold and pain killers don't help.

Absolutely not. I wouldn;t dream of it.

YANBU to be concerned. Find out as much as possible about your child's diagnosis- eg are other joints impacted?

My daughter has this. A number of different joints. So we have had to find work arounds. I would advise that if it impacts her fingers / hands that you get a formal diagnosis in case she needs to use a laptop at school.

I think you can self refer https://www.nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme

He would benefit from referral and targeted physio. Same as dc
For adult Call local nhs musculoskeletal physio service. In our area there is funded 12 week Nuffield joint pain management programme and individual and small group physio led gym sessions . Myself and dc hypermobile. Now I am facing total knee replacements.