Cerebral Palsy
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do CP babies tend to cry more than others?

Sam_ToucanSam_Toucan Member Posts: 25 Connected
edited November 2016 in Cerebral Palsy
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Our son is only 3 months old, but already showing signs of CP (and confirmed by scans). He cries pretty much all the time apart from when he is feeding or sleeping, though there are brief periods of calm. The only way to console him is to pick him up and slowly walk around the house, which makes it pretty hard to look after his sister or get anything done.

I realise this may be just normal baby crying, however I was wondering, do CP babies tend to cry more than others? Are there ways to help them cry less?

Replies

  • forgoodnesssakeforgoodnesssake Member Posts: 323 Pioneering
    My son has athetoid CP (we knew from very soon after birth) and I have to say that he cried almost non stop for months...it was awful AND he slept very badly too. Looking back I think he was probably pretty uncomfortable a lot of the time. What worked best for him was not slow walking but holding him upright (front sling was good) and then jogging on the spot! I kid you not, as long as we made sure his head could not flop about he would actually fall asleep better whilst being fairly vigorously moved about...we often had to sort of woggle his thigh through the bars of his cot and that helped too. Again with knoweldge and hindsight almost certainly the vigorous movement was helping break lots of involuntary muscle spasms (esp in hips) ans do helped him to relax. But you have my sympathy!
  • stephgreenstephgreen Member Posts: 28
    YES is the answer. That's all jack did he has dystonic cp and he screamed all the time. Those early days are extemely hard but it does get better. I think jack was just in pain all the time. I could never get him in a routine cos he never fed or slept propery. Jack is 2now and things are a lot better, although he does still cry when left but nothing like he used to be. I think it's the hardest thing when you can't make them happy it's very draining. I look back and wonder how we got through those days and never could leave the house apart from to go to the hospital. I really feel for you, I hope you have a supportive family. Do u know what type of cp he has yet. We used to find holding him over your shoulder and walking round slightly bent backwards. May be reflux too.
  • Sam_ToucanSam_Toucan Member Posts: 25 Connected
    Thanks for the responses and advice. We've discovered that generally the best way to hold him is upright with his feet hanging free. I'll have to try rocking him when the muscle spasms occur to see if that helps.

    He did have reflux issues, but we've addressed those with medication and elevating him after feeding and I don't think that's the problem now.

    In regards to the type of CP he has - we don't know yet, how early can you get that diagnosed? So far I've observed stiffness in his legs and feet, in addition to the muscle spasms.

    It's sad to think that his CP could already be causing him distress - as I know he's in for some tough times ahead and I was hoping to at least make these days as happy as possible!
  • forgoodnesssakeforgoodnesssake Member Posts: 323 Pioneering
    Hi, if it is any consolation myson became a much happier person as he got older...and whilst he has no speech (uses a communication aid) cannot walk unaided and cannot do his own feeding or self care he seems pretty satisfied with is life...he knows lots of other disabled poeple and sees them have lives, jobs, hobbies etc and this has helped with his slef image I think. Long may it continue as the teenage years can be tough on any kid (he is just 15)
  • stephgreenstephgreen Member Posts: 28
    That's so lovely to hear, I worry that jack won't be happy with the situation. As long as he's happy I'll be happy. I worry that one day he may tell me he hates his life or ask why it happened to him, I really dread it. I really hope he has a happy future. I wanna make sure he has lots of friends in his situation too, I can't bare him being lonely.
  • stephgreenstephgreen Member Posts: 28
    We had feeding problems from about 3 months my instinct told me there was something more wrong. It takes a while to get a diagnosisasthe docs never like to say until they are older jaut because the picture comes clearer as they grow,
    but just keep doing lots of physio, baby massage (I do this with jack now he loves it) baby yoga, singing, reading just loads and loads of stimulation, its all good for the development of the brain. The more you do the better, one doctor said to us take jack everywhere and I don't mean just carrying him over your shoulder, take him to the zoo, the supermarket, baby groups. This has stuck in my head and now I realise why it's so important.
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Oh gosh yes - my son Tom screamed his way through his entire first year. He would cry so much that he would be wet through with sweat and his back would arch so much that just the back of his head and the heels of his feet were touching the ground. He particularly hated being in the car seat so travelling anywhere was just SO traumatic. We didn't know why until he was diagnosed at just over a year old - he was initially diagnosed with colic, although this did not explain why he was so stiff that we couldn't bend him nor why his physical development was so far behind his twin sister.

    Once we knew Tom had CP it became easier to deal with because we could start to learn ways in which we could help him break his tone - bending his knees or his ankles used to help stop the pattern of high tone going all the way through his body and causing pain.

    Tom had terrible problems with trapped wind back then - we used to hear great bubbles of air in him and we hear him gulping air when he fed but his muscles inside are so tight he could never burp it out again. We used to hold him under the arms with his legs dangling free to try to give the air an exit route straight up and used to spend hours rubbing and patting to try to help him get his wind out. When we realised he had CP and his co-ordination of sucking & swallowing was affected we started using a thickener in his milk to slow the flow down he could better manage swallowing his fluids without chugging lots of air that was the point things suddenly turned around. At about 16 months he suddenly became a different boy - he just changed almost overnight and at almost 3 he is almost always a jolly little bloke with a real zest for life.

    We have also got other children - Tom has a twin sister and we have a 5 year old too. I used to worry so much at how little attention I could give the girls when Tom was in such distress but I can see now that it has done no long-term harm and I have a wonderful relationship with all 3 of my kids and they love their brother very much.

    I shall be thinking of you and hoping that you find the magic key to helping your little one get through this. I used to wear Tom in a front sling at try to get things done while I was wearing him (it never stopped him screamin though!) I remember trying to load the dishwasher while trying not to bend down so far that he fell out of the sling - it was not an easy time but I can look back on it now with great pride that I survived it and that I am raising three happy, bright and gorgeous children.

    Maria xxx

  • Sam_ToucanSam_Toucan Member Posts: 25 Connected
    Thanks for the encouragement and support. It sounds like we don't have it as bad as it could be - perhaps 5-10 minutes of hysteria a day, when he is completely non-responsive, apart from that we can usually stop him crying by picking him up and talking to him.

    We got some advice from a physio a week or two ago, in how to hold and position him while sleeping. A few simple things have definitely helped improve his mood!

    Sam
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