Cerebral Palsy
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Diplegia- 21 month old.

MaddiesMummyMaddiesMummy Member Posts: 4
edited June 2014 in Cerebral Palsy
Hi,
My Daughter has been recently diagnosed with Diplegia. We noticed when she was about 12 months old she wasnt sitting up as well as she should be and had to be supported all the time. Once the Health Visitors finally came round to my daughter 12 month check, she was almost 14months.. they then referred my daughter to the physio (Dec). Shes been cruising around the furniture since christmas, and she still is just cruising. Shes still very un steady when shes moving around. My daughter is finding it very difficult to sit up from laying down, although shes trying so hard. Shes so frustrated and is often crying :( is their anyone else that give me a bigger picture? theres so many questions i would like to ask.
Thank you
Abby

Replies

  • TPTP Member Posts: 8
    Hi Abby,

    My son has spastic diplegia. Diagnosed when he was 15-16 months. He is now 17 years old. The future can be very bright! You'll need to get started immediately. Organise physio and make sure you have a physio and a consultant you can talk to so that you can evaluate reasonably the information they give you. They will not be 100% right on anything because you will ultimately know your child best, but they should have seen many children like her and can give you a reasoned prognosis. Your daughter's character and your support will really dictate much of what happens next. Over the years we did the following things: Ingfield Manor which was invaluable. NHS physio. Private Physio because we wanted to do as much as possible and we convinced our insurance company to pay for it - they resisted fiercely and eventually withdrew completely. Botox. Multi level surgery. Fundamentally,however, we did not succumb to the various pressures from some health professionals and educators to limit the horizon of our son. It's very hard to turn frustration into something positive but it can be done! I promise. And the resolve that your daughter will have as she gets older will be a wonder to behold! the best advice I can give you is to get started today. Work every day. Try to stay as normal as possible. Don't let your daughter become a victim. Don't let yourself become a victim. Take charge of everything and remember always that you will be the best judge of what is right for your daughter because you will know her best! Good luck. It's a different road. It can be bumpy but the rewards are exceptional!
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hello Abby

    Welcome to the Scope forum.

    Please contact us on freephone 0808 800 3333 and we will be happy to answer any questions you may have. As your daughter has recently been diagnosed we could also offer you a referral to one of our regional workers.

    We look forward to hearing from you.

    Kind regards

    Response Helpline Team
  • MaddiesMummyMaddiesMummy Member Posts: 4
    Thank you,
    We've had a nice man from Scope been to see us recently.
    Thank you again for all your help and advice
    Abby
  • MaddiesMummyMaddiesMummy Member Posts: 4
    Thank you so much for your comment. My daughter is currently having physio every week, and we have an appointment with our daughters consultant this thursday. The only thing i find difficult is to talk about it. Shes so bright and clever and im so proud of her as shes progressing everyday. No one has explained to me about her future but im not too worried as shes doing something new everyday and suprising us. All I know is that she will always need physio and when she takes her first steps the physio and OT will sort some pedro boots for her. I feel like i have to fight for appointments and answers all the time.
    Thank you again
  • rachaelneallrachaelneall Member Posts: 6
    Hi,

    My daughter has diplegia too. She is starting secondary school in september. Listen to everything you are told, choose your steps carefully, let her lead the way! They told me my daughter would not walk til she was 8, she was 3. They told me she probably wouldnt walk without support until adulthood if at all...she has been able to make it to our local shop and back and around at school for the last two years. I totally agree with the previous comment, you know your child best! Enjoy her and give her as many different experiences as shes capable of, she will blossom.
    Best of luck.
    Rachael
  • edoveyedovey Member Posts: 10 Listener
    Hi,
    I feel for you; my son was diagnosed with spastic diplegia in November last year. I don'tknow how long you have known about your daughters diagnosis, but I think it gets easier in time to deal with. I had a few weeks of moping and tears, but then I thought this helping my son and how lucky I was to have such a gorgeous child. His diplegia has not stopped him from doing anything and I refuse to treat him any different than I do my daughter. He was diagnosed at 3 yrs old and he is now 3 1/2. We knew something wasn't quite right when his peers began rolling/sitting up/crawling and my son just lay on his back gazing at the ceiling. I can't tell you how many times I was told 'he's so laid back' and 'he'll do it in his own time'. He eventually walked at 22 months, and he walks independently. He has AFO's and gaiters, and before he got those he used to wear piedro boots and insoles. Am not convinced by AFO's, they apparently correct the position of his ankles (he is a toe walker) but he bends his knee so his heel still doesn't hit the floor, and he also rotates his whole leg inwards. However, I am sure that we will eventually correct this. I feel very possitive about the future for my son; he's bright and funny and I love him to pieces! He has physio once a week and we take him yogabugs, tumbletots and swimming lessons. I have been told that physical exercise is very important hence all the classes, and we also stretch ankles after his bath.
    So, I think try and stay positive and do as much as you can to help your child. Don't be afraid to ask questions from physio and doctors; they are being paid to be there to help you and your family.
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