Cerebral Palsy
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Pain when standing

mummynicmummynic Member Posts: 4
edited June 2014 in Cerebral Palsy
Hi,
My little boy (almost 16 months old) has recently been diagnosed with spastic diplegia. In the last couple of days he has started standing up but i am concerned that he seems to be in pain and is crying once he has been standing for more than a few seconds. Today I have contacted the CDC that he is under about it and i am hoping that his consultant will get back to me tomorrow as i am worried about the discomfort he seems to be experiencing. His physio has referred him for some special boots but we haven't got an appointment for the fitting yet so he is standing up with bare feet.
Is it common for children with cp to be in pain when standing? Sorry if this is a silly question but i'm new to this so don't really know what to expect.
x

Replies

  • b8sb8s Member Posts: 33
    Congratulations on your child's achievement.
    My daughter is not standing yet, but she does experience discomfort/ pain when in new positions. You are right to mention it to your consultant and physio, as pain can always be an indication of a problem. This is one of the things I find hardest with my daughter, trying to determine discomfort pain from pain which should be investigated.
  • kingboy25kingboy25 Member Posts: 139 Listener
    Hi
    My son has distonia and I don't have much first hand esperience with spacisity but here goes. First of all this is a new experience for him and he will take some time to get used to it so he will cry. Keep the sessions very short for now and make sure he associates the experience with pleasure. maybe playing with a favourite toy, DVD even a taste of a favourite food.
    Secondly- Do you stretch him to warm up and relax the leg muscles before putting him in a standing position? If not, try it. It's like an athelete warming up before a race.
    Thirdly. He does need to wear shoes. Take him to a good shoe shop and buy a good supportive pair to use until you get prescribed boots, if that is what the experts think he needs.
    best wishes
    rosie
  • mummynicmummynic Member Posts: 4
    Thank You for your replies.

    I am not a happy bunny at the moment. The consultant didn't get back to me so i chased it up and tried to bring forward my sons appointment but was told that this might not be possible as they are so busy so he wont be seen till December!

    I think i'm going to have to go through the physio (who is lovely) but she is on annual leave for 2 weeks. I have had ds checked out by the GP who did a basic check and said they're are no major problems so i feel this definitely needs to be looked into by the dr's at the CDC.

    I feel fed up. I appreciate how busy they are but am finding the lack of help frustrating.

    My ds has been fitted for some Clarks shoes (he's a dinky size 2 1/2 f!) so he has something supportive until he gets his special boots.

    Sorry for the moan and thanks for listening!
  • b8sb8s Member Posts: 33
    You are able to change CDC if you are not happy. We had real problems with waiting times for appt. seeing different doctors etc. Eventually got so fed up with it that I spoke to the health visitor, who made a few calls for me, and we are now under a brilliant paediatrician at a new CDC. It's important you have confidence in them.
  • mummynicmummynic Member Posts: 4
    Hi,

    Just a quick update.
    I got a call from the secretary from the CDC today to say that she has spoken to my sons consultant about my concerns and he wants a hip x-ray to be done. She has faxed off the request so we should get an appointment soon. I'm pleased that we are being listened to.
    Just a quick question,are children sedated for hip scans? I don't think ds will stay still long enough to have it done!

    Thanks again x
  • ElibarebumElibarebum Member Posts: 11
    They are not generally sedated for hip x rays, I've seen one done on a child with CP when I was in training, and the joint consultant just donned a lead apron and held the child in the right posision, it was over in seconds.
  • mummynicmummynic Member Posts: 4
    Thanks for the reply. It's such a relief that he wont have to be sedated and the x ray itself is over quickly. Got the appointment through today and it's booked in for next Friday so hopefully it will all go smoothly.
    Thanks again x
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