Mild CP

My 2 year old has recently been diagnosed with mild CP. It causes her left arm and leg to be stiff but she can use them both. She has OT assessment tomorrow and physio assessment on Tuesday. She was born at 24 weeks and had 3 surgeries so far, so she’s already been through so much. Can anyone give me a sense of what’s to come? We’ve also decided not to tell family she has CP at the moment but after hearing about Jake (from traitors) and Tom (race across the world) I’m not sure if keeping it quiet is the right thing to do anymore. Our reasoning is to try and prevent people treating her different which they already do given her start.
Comments
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Hi @lots2410 and a warm welcome to the community from me!
It's lovely to have you here on the community and I hope you enjoy your time here!
Thank you for telling us a little bit about yourself. It sounds like you and your little one have been through quite a lot, how are you both doing at the moment? I hope the assessments go well, how are you feeling about them?
We do have a great CP network here on the community and some wonderful CP specialists who I will tag now @SaraC_Scope, @Lucy_Scope and @Richard_Scope who provide specialist information and support to people with CP and their families that you may be interested in😊1 -
My cp is classes as mild cant walk though doesn't stop me being cheeky
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Welcome to the community. I'm Sara one of the CP Specialists here at Scope and I have right sided hemiplegia.
I understand your worry for your little girl, especially as she has been through so much. It's a lot for you to process and come to terms with as well. There are some great books that you could share with your daughter if and when you want to have that conversation.
Books on CP
Cerebral Palsy A Parents Guide by Elaine Geralis
Cerebral Palsy from Diagnosis to Adult Life by P. Rosenbaum and L. Rosenbloom
Cerebral Palsy - Complete Care Giving by Freeman Miller and Steven J. Bachrach
Xander's Cerebral Palsy Superpowers by Lori Leigh Yarborough
The Abilities in me: Cerebral Palsy by Gemma Keir
If you would like to have a conversation with me, I'm happy to offer that support. The CP Network team are here to support adults and families with cerebral palsy.
I think it's been really helpful that programmes like The Traitors and Race Across the World have portrayed young adults with CP, and showing with some extra support they can be active participants.
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Hi Lots, your post personally resonated with me a great deal. Like your daughter I was diagnosed with Minor Cerebral Palsy in 1983 after being born 12 weeks prem. I have had many knock backs over the years, but in all honesty I’ve faced the challenges and obstacles and overcome them.
During childhood I had challenges with the way I walked and had to have physiotherapy to help me unlearn the way I walked with my feet facing outwards. I’m fortunate to not have had any surgeries for the Cerebral Palsy, I’m having to stop myself from using the original diagnosis of S*****c Cerebral Palsy. During childhood and into adulthood and still have issues with balance and coordination. One of the long standing issues I’ve found with the cerebral palsy is I’ve had acid reflux disease due to my cp, in fact it’s due to me not being able to keep food down when I was five months old I was admitted to hospital due for this and it’s there they diagnosed me with CP.
Long term I’ve been diagnosed with Osteoarthritis in both hips and lower back and still have some muscular issues and have fatigue at times which can at times be compounded by my long Covid.But it’s not stopped me from achieving so much in life, being able to attend both mainstream and also special needs schools due to having ADHD, Autism, Depression, Anxiety, Learning Difficulties alongside Emotional and Behavioural Problems.
My parents were always told I’d never achieve anything, I gained GCSE’s up to a degree of C&D, I gained qualifications in Horticulture and Environmental Conservation, I worked as a Gardener & Estate Ranger for ten years and as a Support Worker for nine years. Having CP hasn’t stopped me from doing anything that I can set my mind to, be it walking for over 20 miles, tandem paragliding off a 6,500ft mountain in turkey, getting married and a whole host of things.
I am sure that your Daughter will forge her own path in life, overcoming each obstacle and challenge in her own way, she will need your help and guidance throughout childhood and into adulthood, she will go onto achieve great things, make friends, get married, hopefully have children, go to school, college, university and live a successful independent life. Sure there will be some bumps on the way, but you face them when they arrive, how I find living life is to just live each day one day at a time and then build from there. You will have excellent support from Family, Friends, Health Professionals and such like over the coming years.
I wish you all the very best for and wish your daughter all the best to come 😊
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Hi, your situation is so similar to mine and I know exactly how you feel. Today we had a Bayleys for my 2 year old and we are a step closer to diagnosis. Only grandparents are already aware of a PVL diagnosis since NICU and that it could mean more at a later date. We purposefully didn't share wider because we wanted to avoid probing questions on something too difficult for us to talk about at the time, especially without answers.
Personally, we are going to share with close family/friends when the CP diagnosis comes (whenever that may be). It is becoming more obvious in some ways when comparing against peers, so I think we will feel the need soon even without formal diagnosis. Also, work are already supportive with time off for appointments but I think it would help people to understand better of they knew too.
Like you, I am struggling to understand what is to come as CP is so varied, even within the mild category. I just want to ensure my child can have as many opportunities as possible and not feel different.
Sometimes I feel ashamed for keeping this a secret when it is our reality, selfish for worrying when I am so grateful for my child, and an imposter when there are parents out there with more challenging caring roles.
I hope this response helps you feel less alone.
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Thank you all so much, your comments have really helped me. I’m going to look at the books for her and us.
She can walk but it was delayed and took 6 months from first steps to walking everywhere. They wanted to do an MRI on her but we’ve declined this as we know she had a bleed on her basal ganglia following one of her surgeries as they did ultrasound scan on her head and I don’t want her going under general anaesthetic.
@Grumpy1314 thank you for sharing your story and showing you can achieve anything.
Off to occupational therapy assessment soon and hoping to have a plan.
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They said I would never walk or talk, then I started at the age of 3 going on 4 years old and I haven’t shut up since 😂
Good Luck with the OT, hope it all goes well 💚
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@lots2410 My colleague @Lucy_Scope hosts an online parents group for children with CP, which you are welcome to attend.
Her email is lucy.hindmarch@scope.org.uk Please contact her to find out the date and time of the next meeting.
Kind regards.
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Hi @lots2410
I wanted to drop by and say hi. You've had some great replies here. Many of the stories mirror my own. My mum (who was very young) was told that I would never walk, talk or sit up independently and that she should put me in a home. I won't type her exact response as it isn't family-friendly 😂
Suffice to say, through hard work and some tears, lots can be achieved!
Remember, receiving a diagnosis can bring up a mix of emotions, and there is no set way that you should feel.
As you already know, we have the Scope Online Community forum where you can get peer-to-peer support, and talk with me or @SaraC_Scope and @Lucy_Scope. We also have the Parents of Children with CP Facebook group.
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Im walking now with a frame still driving my support nuts
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