my daughter has joint hypermobility can you help

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Hi can anyone help please my daughter is 7 years old and has joint hypermobility,it has always mainly been in the tops of her legs but lately she has been complaining of her knees,foot,arms and jaw we have always combated the pain with a hot water bottle and sometime ibuprofen,these dont seem to be working anymore,i hate seeing her going to bed in so much pain and asking to go back to the doctors i was wondering is this normal,does it get any better and should we take her back to the doctors,we have seen consultant twice and they dont really tell you much and what you should expect it awful watching her suffer. Many thanks for any advice.

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  • Posted

    Hi I am hypermobile, I am 42 now but I can remember growing up being in pain. This wasn't picked up when I was younger and due to this my pain has escalated.

    This has however made me very aware of the early treatment of my son.

    He had very bad laxity in his ankles. He has specialist orthotics in his shoes. This ensures correct alignment.

    I also made sure he only wears trainer boots the best ones are British Knights from sports world. The sole is flexible so he doesn't have to use a lot of effort to walk. They support his ankles and accommodate his orthotic insoles.

    If you start at the feet this effect the way you walk so it doesn't impact on the rest of your joints.

    I used to get very tired writing so did my son.

    I discovered that the fatter the pencil the less effort is needed to grip it. Forget triangular pencil grips, the best thing to do is wrap lots of elastic bands round a pencil so it is really fat.

    Anything repetitive will cause pain and exhaustion. Try not to sit in one position for too long or stand still, run etc.

    Since doing all of these things for my child at a young age it has definitely made a difference. Also karate made a huge difference for balance and stamina. Hes 15 now and has never suffered like I did because of the help I have given him.

    Also talk to your child's school make sure they can take a break during PE and avoid cross country running or anything that would be too much.

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  • Posted

    Oh and with regards to her jaw, make sure when she yawns she holds a flat hand under her jaw to stop it hyperextending. Mine used to lock but now I know what to do I no longer have the problem with my jaw.
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  • Posted

    Hi, I'm 17 years old and suffer with Hypermobility syndrome. I had no problems until I was 11 years old when suddenly my knee dislocated. My brother & dad also suffer with it, please don't worry about your daughter, I know you will but please take note that IT DOES get better. From age 11-15 was when it was at its worse, doctors told me it was due to hormones flying all over the place because of puberty. So be prepared for the worst of it to be during puberty, I tried physiotherapy but to be honest I was lazy and couldn't be bothered. For 5 years I had pain all day everyday in my hips, knees and ankles. 6 years after my diagnosis I rarely have pain, maybe once every 2 weeks. I treat my pain with anti-inflammatory tablets, HOT baths are a miracle for Hypermobility pain, and hot water bottles. There really is no other way of dealing with it but to a certain extent people tend to 'grow out of it' which I think I'm doing since it hardly bothers me anymore. The trick that I've found is as soon as pain starts, take 2 ibeprofen, use ibeprofen gel, nip it in the bud because I've found if I leave it too long, the pain can't be taken away from medication. Good luck to you I hope this helped in some way & I'll be praying for your daughter X bless you x
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    • Posted

      Thank you stefanie im glad there is a positive side, I think she must be having a growth spurt as it's really bad for a couple of weeks then dyes down. I was told that most kids are flexible until the age of 10 and then they grow out of it but in my daughters case I not so sure as she sored very high on some test they did. I was just worried it would turn into something else as she got older. I wish you all the best and will stick to hot water botter and pain relief when nessasery. Thank you for your support.

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    • Posted

      I scored a nine on the Beighton score chart which is the most severe. Boys usually tighten up with age due to hormones but girls are generally worse during certain times of the month. The weeks either side of your period ligaments are more lax because of hormones. This is not something that you generally grow out of its more about early management. If you don't support the arches in your feet this causes your knees to roll inwards which in turn effects hips then your back etc. I think your feet are the most important thing to look after for a hypermobile child. Ehlers danlos is what I was diagnosed with after hypermobility syndrome. Some Dr's say it's the same thing. There is a lot of information online which might be worth looking into.

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    • Posted

      This is very interesting my daughter scored 9.5, would you know the best place to go to get the best fitting shoes for her condition or is it just an iner sole. I am loving the forum have learnt so much more from here than I have from the consultant, cheers everyone for your input.
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    • Posted

      Hi it's better to get a referral from your GP to a podiatrist for orthotics as they take moulds of your feet. They are custom made so they fit your feet perfectly. My son gets a new pair every time his feet grow too much.

      When I had mine made I had the moulds and they also filmed me walking on a tread Mil, the video was played back in slow motion and my feet looked like pieces of ham. They told me that they had never seen feet as wobbly as mine. When my son lost one of his orthotics I asked the podiatrist if he could use my old ones and I was told that it would be the equivalent of wearing someone else's dentures. Each pair are individual to the person who wears them.

      They are made from hard plastic and seem really uncomfortable to start with but after a while you feel so lost and wobbly without them.

      Im pleased this information is useful to you.

      Good luck and make sure you insist on a referral.

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    • Posted

      Hi another thing that would help your daughter is to make sure that she doesn't carry her school bag on one side. It probably isn't relevant at her age but when she gets older and needs to take more books to school it would be better to give her a ruck sack, this is so the weight is evenly distributed. When your ligaments are lax it's easy to end up wonky by having your bag on the same shoulder.

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    • Posted

      Hi my daughter is 17 and has hyper mobility syndrome. It got worst last year when she had subluxation of the shoulders, as well as her knees , wrists, & elbows. If you can find a good physio it really helps. We now have a good physio who is helping my daughter to get stronger , it won't go away completely but you can learn to manage it. Deep heat and pain killers when the pain is bad.Your daughter needs to make the muscles around the ligaments stronger. Exercise plays an important role, but not high impact such as running. It is hard to exercise when your in pain but when it subsides swimming is good when your daughter gets older .a computer at school for lessons is good because there is less strain on the wrists. The HMS society is very helpful they have a website with lots of facts. it's all about exercise, keeping your body strong, but knowing your limitations at the same time and learning how to manage & cope with the condition .

      Hope this helps and good luck , it's not easy I know .

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    • Posted

      Thank you susan for your input some of the reply were a little bit scary, it hard to know what she should and shouldn't do as the doctor said dont retrict her from doing anything but sometimes if shes been raning around all day or we've walked to and from school she complains about her knee and feet/ankles hurting I know its about managing the pain but its heart breaking listening sob themselves to sleep.

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  • Posted

    Hello Alimate40,the best advice I can give you from a mum with a daughter with Hypermobility syndrome (EDS-one and the same) is go to your Dr and ask him to refer you to the Hypermobility /Rheumatology dept at Great Ormond Street Hospital ,once you are there you will be seen by Sue Malliard head of physio,it's amazing who sits up and listens to you when you have letter headed appointments with GOSHospital written across it.....also any paperwork from any Dr's,Consultants,Physios etc Keep.....I once had a consultant copy all my paperwork to get my daughters medical history as her file disappeared!!!!. And READ everything you can on HMS/EDS because sometimes your telling the experts and sometimes their trying to pull the wool over your eyes....be prepared. Its not just a case of bendy joints and stretchy ligaments its a connective tissue disorder, our bodies are made of tissue so therefore it affects everything to varying degrees inc,bones,blood,skin,tendons,ligaments internal organs muscle.......I hope you get the right treatment for your daughter and if there is anything you want to know,please please contact me.......good luck. Twigglet.

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