12 Year old with hypermobility and lots of pain

My child started is 12 and in great pain when she stands, walks or uses a pen. It's very debilitating. we've been through all sorts of diagnoses, the latest being hypermobility. She started struggling with pain at age 8, and it got debilitating about 2 years ago.

I've been advised to try to find a private hand therapist to show her exercises. We're in East Midlands - does anyone have any recommendations? I don't find the GP is interested - so I just want to find a private hand therapist and/or physio who knows about hypermobility in children.

Comments

  • Anna
    Anna Moderator Posts: 925

    Hello @Fran33 and welcome to the online community,

    I understand your daughter of 12 is struggling with the pain of Hypermobility and you’d like some recommendations for a private hand therapist in the East Midlands to help with some exercises for her. There may be some suggestions from our helpful members, some of whom live with the condition, but you might also find more information on the Hypermobility Association website. Here’s the link if you haven’t already found it:

    I also found this leaflet online published by Alder Hey Children’s hospital. It has some helpful suggestions for how to help your daughter manage her pain. It recommends gentle exercises such as swimming and walking. https://alderhey.nhs.uk/application/files/9116/2307/8403/Hypermobility_Leaflet_PIAG_085.pdf

    Please do let us know how you and you’re daughter are getting on.

    Anna ( Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Fran33
    Fran33 Member Posts: 3

    Thank you. We do already do some gentle exercise but it does not help with the very specific pain she has in her hands and feet.

    The pamphlet also says that we need to get some medical support -and I think we do as well. My daughter has been shuffled from pillar to post, and told it's all in her head, and this is affecting her mentally terribly. I need to get her a private practitioner who can help particularly with her hands. I need someone with a good bedside manner and who won't dismiss her but gently show her some exercises for her hands.

    On the psychological side, I do pay privately for therapy for her as it took about a year to get a referral to CAMHS and now we are on their waiting list - but it is hard to undo the damage of being told that she must just do exercise to help herself without any support on what exactly to do for her hands particularly - the insinuation is that somehow she is doing something wrong, and this is really taking its toll. The pain is very bad, but it's only in her hands and feet, so i think she needs quite specialized guidance.

    I'm particular looking for a hand therapist, but if there is any other support out there, please let me know.

  • frogmorton
    frogmorton Member Posts: 29,208

    @Fran33

    You have my sympathy there isn't much worse than seeing your child suffering. I ahve been there with mine (leukaemia then avascular necrosis)

    Have you seen this:

    and this:

    I hope your daughter has seen a Rheumatologist not just got stuck at the GP level?

    My very best of luck and these are for you💐

    Toni x