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different types of CP

Belinda Community member Posts: 1 Listener
edited May 2014 in Cerebral palsy
I'm really confused about the different types of CP, my daughter has not officially been diagnosed. When I mention it to her Physio she just gives me a sympathetic smile & says "she's so young yet & had a traumatic start to life", but I know it's more than that. She has calcification to her basal Ganglia caused by a congenital viral infection called CMV..(Cytomeglio virus or similar spelling!!!!) All 4 limbs are stiff ( have loosened with physio) she is fed by N.G tube, her head will always go to same side & cannot yet hold her head at nearly 6 months. Limbs are very relaxed when in a deep sleep, she does'nt suffer from involuntary movements but does dribble a little bit, but she also suffers from reflux & dribbles most when refluxing. I know she is young for a diagnoses but feel frustrated that can't get a straight answer from anyone, I need to get my head around it & know a little about what to expect in the future. What type of CP is worse?? What type do you think Lucy has?? Is there anyway of knowing now if she'll be a wheelchair user?? The most upsetting thing for me would be if she cannot speak is there a warning sign for that?? I know by now I should have come to terms with it all but I can't seem to pull myself togther, I'm sad all of the time. I feel angry at the world & ashamed to say feel very little love for her, I'm sure it will come but at the moment i'm struggling. Been invited to take her too a special needs nursery it's brand new & lovely I'm sure but I don't think I can handle seeing the children there, it's like a glimpse into my future which scares me, so sick of putting on a brave face only to fall apart when I'm on my own. I'm sorry I sound so pathetic, she's lucky compared to some kids. What sort of age did your children start to achieve things like rolling over, sitting up etc??


  • stephgreen
    stephgreen Community member Posts: 28 Listener
    Hi there i think most people going through the same feel the same way at times. Its very hard but take up the nursery and anything else you are offered. You can make a difference the more you do with your little one. They need all the stimulation they can get especially at that young age as there brain can make new connections and need you to help this. My little boy is stiff in all 4 limbs and when he was younger used to stare right through you as if he wasnt on this planet. But with all the stimulation he has had he is laughing babbling and really takes everything in. It is scary seeing older children but try not to worry and i know its very hard. But the more you put in the more you can help. Jack is 11 months and still doesnt do alot he has good head control and looks around alot sits if i just support the bottom of his back but not rolling reaching or anything like that. Hoping this will come but keep doing the physio all the time. I think we feel like life isnt worth it sometimes but you will get those days just keep strong take care steph x
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hey babe

    Oh my goodness yes, we've been where you are - the stress and worry, fear for the future, despair over all the unknowns - sending you a big hug xxx I don't have the answers for you I'm afraid - there is no-one that can tell you how things are going to be - you just need to hope, give her all the help you can and be prepared for her to surprise you.

    My little boy Tom has quadriplegic spastic cp - that means he's affected in all 4 limbs which I guess is on the more severe side of things. When we got the diagnosis I was told that he propbably wouldn't walk, that he might develop epilepsy, that his cognitive ability might be affected, that he might not speak, that his vision and hearing might be affected - I just hit rock bottom. But, then I thought, right - Tom will show me what he can do, not the doctors and I will help him accept what he can't do and will support him to achieve everything he can manage. He's 18 months now and has very recently started rolling, walking with a lot of support, sitting unsupported for very short periods of time, talking a bit, laughing and is a happy little boy. He's all there too - a bright little spark! He's blown us away with what he has achieved. At 9 months he wasn't smiling, giving eye contact or giggling. He slumped in half when we sat him on our lap and couldn't push himself back up and he had TERRIBLE colic/reflux. He spent the first 9 months of his life screaming and puking. I loved him right from the start but his distress made me feel so inadequate that I definately felt frustrated by him. If someone told me then how he was going to be a year later I wouldn't have believed them.

    You need to give yourself time to grieve - you can't help but think about what it might have been like if she didn't have a disability. You have to feel those things and wait to come out the other side. I felt it strongly too - Tom has a twin sister so I had a daily reminder of what it could have been like for him if he didn't have cp. Don't force yourself to confront glimpses of the future if you aren't ready - I wasn't for a long time. Speak to Scope response - they are great. Get on the internet and see what support is available locally. See if there are any Conductive Education places near you (a great place to meet other mums in the same situ) and keep talking to us lot.

    It gets easier - I promise.

    Maria xxxx

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