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daughter hypermobility worries

Posted , 6 users are following.

louise45804
louise45804

Hi my ten year old daughter has recently been diagnosed with joint hypermobility. While there the consultant checked her over and said she does not have the syndrome. Can somebody pleaselet mme know if they think she has it as I feel I am being paranoid. My daughter has alwaysbeen very clumsy aalways misjudging spaces and bumpinalan totthings, her heart always seems to beat fast although the Consultant checked her heartbeat and ssaid it's fine. She is alwayscomplaining about her clicking joints including her back. When she gets a cold or infection which is quite often it takes her weeks to recover l.More recently she says she chantsto just be normal like eeveryone else. This breaks my heart even hurt when I brush her hair. Her so ssensitive. She is quit thin compared to her peers and she hates this. I feel helpless. The doctor doesn't seem to take this seriously.

2 likes, 9 replies

9 Replies

  • louise45804
    louise45804

    Posted

    Apologies for the typos my phone is going a bit crazy.
  • hinny
    hinny louise45804

    Posted

    Hi Louise. My daughter is 8, and I myself suffer from Joint Hypermobility Syndrome, and she also has been confirmed as having Hypermobility although she doesn't "suffer" from it yet, as I do.

    Let me explain:

    Just like us adults, you will find that hypermobility is as yet incredibily misunderstood. Hypermobility dot org is a good reference website, which my own GP recommended: when we look at my rheumatologist's diagnosis, she looked stuff up there, as she too was unfamiliar with it.

    I was mis-treated, foot therapy clinics who had no idea what was happening to my bones, physiotherapists that had no idea what was happening and therefore prescribed exercises that did more harm than good. This is just to say there is a lot of ignorance and misinformation about it.

    For your daughter: my daughter shares all those complaints your daughter pointed out. What I believe is very important is to realise that hypermobility is just a sate of being: it can BECOME a problem if you ignore it and force your body to do things it will later regret.

    So, she must avoid all contact sports, working out in a gym under too much strain. Yoga is really bad for us! even though it is good for so many others. She should refrain from wearing heels. She should refrain from any sports that put her joints under too much strain. If she does all this, the actual pain that can accompany this condition will take much, much longer to appear. Maybe not even bother her at all!

    Being thin is a blessing: as an adult, obviously the more weight I carry the more strain I put my joints under: I want to lose weight, but to do so I should really run or do some very calory-burning exercise, and I can't, because it makes my joints hurt! See the vicious circle? That's why I, too, stopped worrying about my daughter being tiny: she etas little to protect her intestine, I think (she had a gastroschisis operation when a baby) and if she stays thin there will be less weight for her to put on her sensitive joints.

    Do you see what I mean?

    My daughter is very aware of her condition, and just naturally seems to avoid straining, but otherwise she is perfectly happy and healthy.

    Swimming is a very good strenghtening exercise without putting excessive strain (gentle, not agonistic), and so would be soft martial arts, which unfortunately she doesn't like.

    What I'm trying to say is yes the condition is complex, and your doctor is both right and wrong in saying she is fine: your daughter is probably absolutely fine now, but she should live physical life more "gently", so that her joints don't start tormenting her when she gets older.

    Don't despair, just tell her to avoid rugby and football, watch her ankles, ensure she always has well fitting and supportive shoes (I invest in Clarks shoes for her rather than the cheap supermarket shoes I used to happily get for my sons). Don't give up trying to find someone who KNOWS about it: for me, it took two and a half years of pain, until one GP mentioned the word hypermobility and sent me to a rheumatologist.

    I am guessing that because she doesn't understand what is happening, she feels left out or "different". The sooner she becomes aware of what is actually the case, the sooner she'll see that she is just lucky to know so young to be careful with some things, and that will save her a lot of trouble later.

     

    • louise45804
      louise45804 hinny

      Posted

      Hi hinny

      Thank you SO much for taking the time to respond to my concerns. Neither myself or her father have hypermobility issues so you're input is greatly appreciated.

      My daughter loves her gymnastics spends 5 hours a week doing it along with the conditioning. The consultant said there is a chance she could get early onset osteo arthritis and that he was referring her to see a physio who can advise on what exercises she must avoid so once I've spoken to the physio I am hoping she will be able to continue with this as it's her passion.

      She suffered with bad reflux as a baby and would quote often refuse to feed even now she sometimes complains her tummy is sore but this usually passes after a day.

      It's reassuring to know that she's not the only one going through this and ill be sure to check out the site you mentioned x

    • hinny
      hinny louise45804

      Posted

      Good luck smile Gymnastics is one of the things our knowledgeable physio recommended for my daughter. I guess the main difference to remember is whereas for most people it's ok to get to pain from too much exercise, with hypermobility, don't. As my doctor said: if you strain for an hour, rest for two. That is the main thing, just tell her not to strain  but by all means do everything she feels she can do.

      As for her tummy yes, I have learnt that with my daughter as long as her "pickiness" concerns healthy food (she hates sauces and complicated food, she likes her food simple and basic, hates tomatoes unless raw and then I found out that the more you cook tomato the more difficult to digest it is), I let her tummy decide what and how much, and help her avoid excessive irritants such as chocolate. She herself chooses only water, to drink!

      Take care smile xxx

    • louise45804
      louise45804 hinny

      Posted

      Also just wanted to add thanks for making it a lot clearer about how it can develop into the syndrome... it makes more sense to me now.
    • beth87561
      beth87561 louise45804

      Posted

      That makes me wonder...I have had reflux problems (for at least all of my adult life). And it's continued to worsen.

      Does anyone know if this is common amongst Hypermobility issues?

  • emilia12163
    emilia12163 louise45804

    Posted

    hi Louise, I'm 16 and have recently been diagnosed with hypermobility. If you're worried and confused about whether or not your daughter has the syndrome- I would definately reccommend seeing a rheumotlogist. And better now than later. Thinking back to when I was a kid, bot my mum and I can point out signs and common traits of hyper mobility in my childhood even though i only really started 'suffering' from it (e.g. joint pain) in the past few years and being mistaken for an injury it started to spread through numerous joints in my body in the short time of a month. So I think you should be seeking as much help as possible for your daughter, and get her on a certain fitness plan in which 'trains' her muscles to help live with hypermobility. If not, she can be victim to more pain and may have to take medications such as steroids in middle age. 
  • rosey23214
    rosey23214 louise45804

    Posted

    Hi Louis

    Please hold on and keep fighting for your daughter I had to fight for about 15 year to get my daughter diagnosed had several second and third opinions one cardiologist in in Grate Orsmond Street Hospital told my daughter tell your mum to feed you and you will feel better ( you don't want to know how far my complaint went to). Another Cardologist at the heart hospital reluctantly at my request gave my daughter a heart monitor and when we return for the result she had areas where her heart was beating 173 beats per minute he said she must have been having a nightmare .He put her on heart medication after I told him that if anything happens to my daughter he will pay personally. When my daughter was younger the doctor's said i was A over protective mother one doctor even said to my nine years old daughter that it might be in her head she and her consultant was told not treat my daughter and to assign another consultant for my daughter . I diagnosed my daughter myself. My daughter is now 24 and was at last diagnosed after I took a letter by hand to Professor Graham who has now retired Dr Kazkaz has taken over from him bases at UCH . MUST go now but keep fighting for your daughter. Get referred to Dr Kazkaz

    Go luck

  • beth87561
    beth87561 louise45804

    Posted

    Watch close for the signs. Is she flat footed, does she hyperextended her knees, elbows, is she able to do things like touch her thumb to her wrist in a backward motion, splits, touch her hands flat on the ground without bending her knees....there are so many signs that were missed when I was a kid. Now, at 45, I've had one knee replaced and need the other done ASAP. The pain is everywhere and has caused many other issues.

    These things do not mean she has it but a good place to start.

    Any of these symptoms I would say is cause for concern and would search for a doctor who is really knowledgable on the subject. There doesn't seem to be many out there. I have yet to find one. Which is part of the reason I joined here a few weeks ago. Good luck to you both. Hopefully this isn't the case and it is only her natural growth process.

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