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New diagnosis, so many questions??????

ZeezeeZeezee Posts: 80Member Pioneering
edited August 2016 in Parents and carers
My beautiful 20 month old daughter has just had a MRI brain scan which showed she has PVL and Quadriplegia Cerebral Palsy. Although I expected it to show Cerebral Palsy I was a little shellshocked about the PVL and that her CP was quadriplegic. She has been having physio for 7 months as she cannot sit, stand, rollover and her right side is much weaker than her left side, her digestive system is very slow and suffers from chronic wind and constipation. Now I am writing some of her problems down it seems strange that I was so surprised at her diagnosis but Ziyal is an absolute delight, she is such a bright, happy (and loud) child who's speech is amazingly advanced and I actually forget her medical problems when she is sat in her supportive chair playing with her toys, that is until I stop and think about all the adaptions I have had to make for her to simply play with her toys. I would really appreciate some feedback from parents/carers of children with similar issues because trying to get respite care/understanding professionals/real friends who don't look like their heads will explode when you speak to them, and info on helpfull charities as I am a single parent and cannot return to work now or in the forseeable future. Any advice would be appreciated
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Replies

  • Louweb93Louweb93 Posts: 7Member Listener
    Hi Zeezee, my son turned 2 in September and he was diagnosed with Cerebral Palsy in June.
    My son is able to crawl and trying to stand unaided finally! After a lot of physio and we go to Hydrotherapy swimming sessions every Saturday afternoon.
    I am also a single mum and I work full time.
    If you would ever like to talk I would be more than happy to give you my email as I would love to be able to chat to someone in a similar boat to myself.
  • VickySVickyS Posts: 133Member Listener
    Hi Zeezee,
    Ziyal sounds like an amazing bundle of joy!
    I don't have a specific experience in this area however I think Scope have a parent befriending service. It may be worth dropping their helpline a line and seeing what they can offer, [email protected]
    Good luck with everything and keep us updated with Ziyal's progress.
    Vicky xx
  • ZeezeeZeezee Posts: 80Member Pioneering
    Hi I would just like to update my last post, I said Ziyal could not roll over but at the physio's clinic she rolled over for the first time on friday, Who says friday 13th is bad luck lol, Precious moment xxxxxxxxxx
  • VickySVickyS Posts: 133Member Listener
    That's great news!
  • Louweb93Louweb93 Posts: 7Member Listener
    That's brilliant! Such a great step! I have responded to your comment to me - I hope you can see my email ok :)
  • Hi ZeeZee....

    Caudwel Children are a really good charity as they support families who have children with additional need across the UK and Ireland. They provide funding for sensory equipment, buggies, car seats and also funding for therapies for children with acquired brain injuries / cerebral palsy.

    There website is www.caudwellchildren.com..... If you would like anymore support I am a family support coordinator for the charity and can provide support for you if you require is. my email address is [email protected] 

  • InformationSupportWorkerInformationSupportWorker Posts: 15Member Connected
    Hello Zee Zee i am an Information and Support Worker at Scope. If you'd like to chat further about what is available or anything else, please let me know. Best wishes
  • barbforsheebarbforshee Posts: 5Member
    Zeezee I am a new member but I couldn't help listening or should I say reading your situation. My son is going to be 23 on Sept 5th and he was born 2 1/2  months early. He has CP and was born with PVL. They discribed this to me like his brain was a computer hard drive and the PVL was like bad spots on it. They told me I would never know where these bad spots would be they would just show up in things he wasn't capable of doing. He's 23 and he's been through 4 years of college and he holds down 2 jobs and he has no problem doing anything you or I could do. His CP gives him trouble walking and he has what is akin to club feet. He's had those worked on several times when he was young. He falls more than me or you but he was taught how to in physical therapy. I know the things you are going through but I was told by my son's neurologist. Don't put limits on your child and just see what they are capable of doing , which it sounds like to me that's the way you feel. You say you forget she has disabilities except when you think of all the things you have to give to make it capable for her to do the things she can do. That's ok. When my son first walked to me I didn't care that he had to have a walker and braces to do it. My son was walking just like anybody else's kid. I was thrilled. I know how you feel. You keep feeling the way you do and encouraging your daughter with every breath she takes and she'll do things you never dreamed. I know cause mine has.
    Barb.
  • Cathy351983Cathy351983 Posts: 1Member Listener
    Hello Zeezee,
    I'm Cathy I have a son he just 
    He turned 1 year old last December 29 2018. He was born with PVL and was just diagnosed with CP spastic quadriplegia.  I'm really worried. The neurologist said if he can sit around 2 years old then it's a good sign that he can walk. We go 4x for therapy . I'm really hoping and praying for my son. I hope uou can share somethingto me about yiur child how she is doing now.

    Happy new year to you and your family . Godbless . I'm hoping to hear you soon.

    Cathy

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