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Right arm?

TripletmomTripletmom Member Posts: 37
edited May 2014 in Parents and carers
Hi, my son is 21 months old with quad cp. I just wanted advice on his right arm since born it goes above his head 99% of the day and while sleeping?
i do his physio with him every day to try and relax the muscles and spend extra time on his arm. It still does back above the head???

Even when in his car seat, new buggy and standing frame the arm is either above his head or on the frame right back, it wont stay in front of his body?.

kelly x

Replies

  • renacahillrenacahill Member Posts: 145
    Hi
    My grandson also has problems with his right arm in that he does not use it, although it is not spastic or paralysed. If he is relaxed the arm is down and the hand open. On movement the right will fist every time. You firstly need to find out from the experts what is happening with this right arm. The physio should be able to advise.

    In elli's case the arm is usable though because the left works better he has concentrated all his efforts on that. He has fluctuating tone and whenever he makes an effort to move his left, the right one will fly up and get rigid. If he is excited in his buggy his right will fly out but he has learned how to grab it and hold it down with the left. He will also hold one or both arms back like flippers! It was explained to us he cannot isolate the movements in his limbs yet (though the legs are starting to isolate when sitting x legged) so if the left wants to do something the right will automatically fly out and go rigid. Also he uses his arms as counter weights when trying to stand and balance, or move. He is very wobbly and has poor balance.
  • TripletmomTripletmom Member Posts: 37
    Hi,
    Ive asked the physio, she doesnt explain much about it? Thanks, i understand it more now. Ive read alot of your posts and your grandson sounds so much like my son. Even thou cp is different in all, but elliot sound just like him? My son is 2 in jan but still doesnt roll as yet? Head control is getting there. When he is teething or poorly its like he takes lots of steps back to like a new born?

    Thanks again for replying x
  • renacahillrenacahill Member Posts: 145
    Hi Kelly
    The lovely people at Brainwave (google this, its a centre for brain injured children) are very good at explaining what is happening with each individual child. We attend there with Elli every 6 months (been twice so far). They may be able to give you some pointers because if you can understand what the brain is doing and what the jumbled up signals to the muscles are doing in response, you can find ways to counteract them. It does cost do go, but last time he was sponsored so only had to pay a little!

    Elli rolled at about 11 months first, then stopped and started again about a year later!!? He rolls best to the right as he has figured out that grabbing his right arm and rocking his legs he can roll himself over. Brainwave were impressed as it overcomes his extension pattern (head and back arching backwards) by pulling him into a flexed pattern.

    Elli has fluctuating muscle tone and difficulty isolating his movements, so the right arm flying up, unbalances him, making sitting and doing stuff difficult for him. tbh it is really concerning to me that the right arm isn't used at all despite him having the ability to use it. I have ordered a CD from Hemihelp to see if any of their exercises can help. We do hand over hand with his right arm but not much luck so far.

    Elliots CP is much more athetoid than spastic (his diagnosis) now that he is 3, but the picture has emerged slowly over the 3 years. Until he learns to control the right arm more his balance issues will be more difficult than if he didn't have this problem.

    kate x
  • TripletmomTripletmom Member Posts: 37
    Hi Kate,

    I will look into Brainwave, i have a day with bobath next month looking forward to it. Brody has started half a day nursery today with his brother and sister so i'm hoping this will also bring him on. He already does conductive education which has helped him lots already. He can babble for england:) its so hard just waiting to see will they walk are the doctors right?? Elliot is very lucky you seem as thou you are trying everything possible.

    Kelly xx
  • renacahillrenacahill Member Posts: 145
    Hi Kelly
    No we are not looking at SDR for Elli as he hasnt any significant spasticity in his legs (or anywhere!). Its really for spastic diplegia children to cut the nerves in the spine and reduce the tightness in the legs. A friend of ours though is having this operation in england soon, having moved heaven and earth to get there. So sorry to hear your little one had broken leg, bet dad felt dreadful, they always wriggle when you least think they will, even normally developing babies will roll off the changing mat onto the floor!
    Is your son going through a stage of going floppier and the neck control going? Elli did this, held his head up almost immediately after discharge, then went gradually looser all over, and still now at over 3 his head can wobble when he is tired. His trunk and neck though are usually not bad (we have done lots of Brainwave exercises focusing on these). Recently we have been doing Anat Baniel therapy and suddenly he is doing much more with his right arm. Not a lot but very early days, but he was not doing anything for 3 years so it is progress! Elli rolled back to front a few times at 11 months then didnt bother again for about a year! Think he couldnt see the point as he hates it on his tummy! He can sit if we put him cross legged but falls as soon as he tries to play. His big issue is balance and the extension pattern which throws him off balance all the time. It is painfully slow but they get there in the end.
    Actually we are relieved SDR is out of the equation as its a scarily big operation, and if done in usa costs a fortune. Hope your little boys leg has healed.
    kate x
  • TripletmomTripletmom Member Posts: 37
    Hi Kate,

    Correct me if i'm wrong, have you looked into the sdr treatment for elli? If so what's your thoughts? Its just i don't think my son will be able to have it? He broke his thigh bone after his dad putting him on the sofa. He decided to then roll? His neck control is even worse at the moment? Still no rolling,crawling or sitting. He now does swimming, conductive education and i am in touch with Brainwave.


    Kelly x
  • TripletmomTripletmom Member Posts: 37
    Hi Kate,

    Not sure if my son can have sdr? Who's the best person to ask? Yeah dad still feels guilty:( Elli sounds like he is doing well, Hope my little man improves. Cant wait to go down to Brainwave hopefully making the journey in the summer thou as moving house soon. Never heard of Anat Baniel?? Trying to get get a second hand standing frame to have at his nursery. Oh and he had his last xray tuesday all heeled thanks xx
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