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Where to look for help for my 4 year old?

Posted , 3 users are following.

RN4KU
RN4KU

I have an almost 4 year old boy, he did not walk until 22 months, still very clumsy and falls.  He did wear SMO's as a toddler, his knees appear very hypermobile.  His right knee hyperextends more than the left.  He seems to have lowish muscle tone in legs and seems to get tired quickly.  no one has mentioned anything about JHS, but I am very worried now.  He does not seem to be getting any better, he is in PT 2x per week.  My husband just thinks he needs to strengthen his leg muscles with weights.  I have some flexible joints, but not sure as a child if I had more.  

What type of specialist do i go to for an evaluation?  The pediatric Podiatrist says nothing is wrong.  No one seems to think there is a problem, but he has very low muscle tone. 

Any information is appreciated. 

0 likes, 3 replies

3 Replies

  • sally00350
    sally00350 RN4KU

    Posted

    HI 

    I got diagnosed at the hypermobility unit at St Johns and St Elizabeth hostpital. It wasn't picked up in me unitl I was in my 20's and I am off back to have another evaluation soon as I am not sure if mine has changed. Anyway they are the specialist to ask and I am sure they could help. I am not sure if you can go on the NHS as I am going privately. 

    Here is the link

    http://www.thehypermobilityunit.org.uk/

    There is also the hypsermobility syndromes association which has got a help line so they might be able to help too.

    http://hypermobility.org/

    Also you can be hypermobile and not have the syndrome/s so you soon might be fine.

    hope one of the above helps. Best of luck

    Sally

  • Vane78
    Vane78 RN4KU

    Posted

    HI, my daughter (3) has just been diagnosed with hypermobility after a year wasting our time with the NHS visiting 3 different hospitals and different GPs, I was even told that I was a paranoid mother, also that what she might have is psychological and I should ignore her.. I was really upset. I took her private, to an osteopathic who told me straight away that what she has is hypermobility, and told me What to and what not to do.

    What a relief to hear that I can do something for her.

    All the best. Hope your son finds the support he needs.

    • RN4KU
      RN4KU Vane78

      Posted

      Thank you for your help, your an amazing mom and an advocate for her health.  
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