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Can any help im at my wits end

bopadaviesbopadavies Member Posts: 5 Listener
edited March 2017 in Disabled people
A very long story short. My 7yr old has ASD ADHD and globel delay. He has also been diagnosed as hyper mobile and hypertrophy (not strong muscles). I am really worried as he is constantly complaining of pain in both legs from hips down and his one foot is now turning in. He has been cleared of CP and Musclar dystrophy and his physio has no idea why he is in pain. Itvhas got so bad this week he is in a chair as apart from around the house any more walking and he is sobbing even with pain killers. Any ideas anyone 

Replies

  • WheelyRachelWheelyRachel Member Posts: 67 Courageous
    edited March 2017
    With hyper mobility comes inflammation to the cartilage and ligerments and a tight cramp like sensation. Maybe some hydrotherapy would help him. Also get a blood test for build up of lactic acid as this also causes muscle pain.
    Hot towel wraps may also elevate some of the tightness.

    i also use a tense machine before going to sleep for 30imns it really helps me.

    I hope I've been of some help others may know even more.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @bopadavies welcome the the community, this sounds really tough.  I hope there will be some members along soon to offer their experiences.
    Scope
    Senior online community officer
  • bopadaviesbopadavies Member Posts: 5 Listener
    Thank u for u responces. I will try the hot towles. Due to his sensory issues we cant try a tens. But waiting for bloods to come back as they keep sayibg arthritis but they not listening its not his joints its his thigh muscles and calves and ankles that he said he has pain in. Just glad someone here had a idea of what it could be as nobody said it could be linked to his hyper mobility
  • [Deleted User][Deleted User] Posts: 211 Pioneering
    The user and all related content has been deleted.
  • bopadaviesbopadavies Member Posts: 5 Listener
    We do the massage and he has a heated weighted blanket he not fussed on it but will be easier for him than the hot water bottle. He only been in school 50 mins and they phoning already.
  • [Deleted User][Deleted User] Posts: 211 Pioneering
    The user and all related content has been deleted.
  • anaqianaqi Member Posts: 54 Courageous
    Has he been assessed for Ehlers Danlos Syndrome?  

    I have Ehlers Danlos Syndrome Hypermobile type.  It's a genetic connective tissue disorder.  The collagen in the ligaments is faulty which makes the joints hyeprmobile.  It can cause a lot of pain as the joints can partially dislocate and cause soft tissue injuries (tendonitis, bursitis, etc.) plus the muscles have to work hard to keep the joints in place so you end up with knots and muscle spasms which also cause pain.

    It's not well recognised, it took me 23 years to get a diagnosis.  The treatment is pain relief and physio to strengthen the muscles to help support the lax ligaments.

    I hope you find some answers soon.  
  • SerapheniaSeraphenia Member Posts: 6 Listener
    I do suggest your first step is to get back in touch with your Doctors and ask for them to put him in touch with  Pain Management Team at your local hospital. Whilst waiting for a diagnosis since it is unfair for your son to have to wait for help with the pain he is having. This is something that needs long term care and both areas his Physiotherapist and the Pain Management team working together may be able to give you the support needed to help him with those issues. Are you claiming for both Disability and Carers allowance for your son and yourself? Being financial taken care of can help with having to get to the appointments required to help with his pain and movement.
       I really do hope you get the help you require until then my thoughts are with you, it is so difficult seeing a child in pain. One thing that did help me with the pain in my hips was a warm bath with Radox Muscle Soak I am not sure what is in it but after spending an hour with a support for my back made the pain somewhat bearable.

    Take care and Blessing to you and your family.
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