Cerebral Palsy
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Loss of use in legs.

gazzhowardgazzhoward Member Posts: 5 Listener

i have a 19 year old son with minor CP. He competes at athletics and is a very strong athlete.
He is currently in hospital for the second time in three months suffering from a total loss of use to both legs.the first time this happened it continued for a period of 10 days with mobility/movement coming back to full use over that period. during his stay he had an MRI scan, Lumber punch and a nerve check through his body all these tests came back clear. a Neurologist came to see him and basically said that there is nothing to worry about his movement will return and put it down to his CP.
now after three months it has happened again and he is in hospital going through the same tests.

my initial question is, has anyone within this forum experienced the same or knows of any friend, dependant or relative that suffers from CP and has had the same experiences.

we did not get an outpatients appointment from the hospital to see a neurologist we went to the GP who sorted this for us but that is not for anther four weeks.

i would be grateful for any advice or a direction to take in order to ascertain what the cause could be or is it something that my son will have to put up with for the rest of his life.

thanx in advance

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @gazzhoward
    Thanks for your post and it's good to meet you.
    I have heard of this anecdotally but I must add that the people who were affected had other impairments alongside their CP. When this happens to your son, does he lose feeling in the legs as well as the ability to move them?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Jean_OTJean_OT Member Posts: 532 Pioneering
    Hi @gazzhoward

    Sorry to hear of the difficult time that your son is having, it must be worrying for you as a parent.

    Over a three decade career of providing advice to people with cp and their families I think I have only heard of people describing temporary paralysis about half a dozen times. So, although I'm unabled to give any qualified medical opinion I certainly have formed a personal opinion that this is fairly rare. Temporary paralysis isn't something that I would personally typically associate with cp so further investigations to try to identify if there is another condition acting in parallel seems very wise. 

    For most people I didn't get to learn the the final diagnosis/outcome but I do remember that in one case it seemed that exam stress was the trigger and it stopped when the stress was removed. For someone else I vaguely recall that it was a genetic condition that effected the salt balance in the body, googling it again now I think that must have been Gamstorp Disease.  

    I suppose the bottom line is that there are many complex and interacting factors that can impact on a person's functioning and sometimes it seems that professionals can make an assumption that something is associated with a person's cp if there isn't some other readily identifiable cause. It does sound that the doctors working with your son have made a good attempt to investigate what is happening for him and the fact that he is going to have further contact with a consultant seems positive.

    Just a thought......Perhaps it would be possible to view the wait to see the consultant as an opportunity to gather some information which might be informative later, if only to dismiss some lines of thought. I'm wondering if there would be any value in your son to keeping a daily diary of his activities, food & fluid intake, mood, pain levels, etc (anything else he thinks relevant) and his assessment of how his leg function is......maybe over a period of time it would be possible to spot a pattern or trigger to the difficulties he is experiencing......  

    Best Wishes
    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • gazzhowardgazzhoward Member Posts: 5 Listener
    Thanx Jean for taking the time to reply. 
    we spoke to the consultant last night and after doing all of the tests that the hospital can do and the results remain the same, all clear, then he mentioned that it could indeed be stress related which would make sense due to the amount of stress he puts himself under with his athletics. 
    Again many thanks and will keep you updated 

    gary. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @gazzhoward
    I hope things improve very soon. Please do stay in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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