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Cerebral palsy

74 replies

AnnabelleQ · 24/10/2021 23:39

Hi, is there anyone who has mild cerebral palsy who wouldn’t mind me asking a couple of questions? DD has just been diagnosed. Thanks

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GreenWhiteViolet · 24/10/2021 23:41

I do! It affects one side of my body. Happy to answer any questions, although I might not be able to answer until the morning.

AnnabelleQ · 24/10/2021 23:46

Oh thanks for replying! I’m so confused as DD doesn’t seem to have many obvious symptoms other than a slightly rigid walk/run and the consultant pointed out her left foot and calf is smaller and approx 1.5cm shorter. Just wondering what to expect over time now? Thanks again Smile

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AnnabelleQ · 25/10/2021 10:03

Hi @GreenWhiteViolet - sorry not chasing at all but realised I didn’t tag you in my reply just so you see it! No hurry of course Smile(can you tell I can’t get my mind off it all!)

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GreenWhiteViolet · 25/10/2021 13:03

Hi @AnnabelleQ - sorry for not getting back to you earlier! Busy morning! I hope some of this helps, but it may not all apply to your DD - take what's useful from it. I'm in my thirties so some of what I say about treatment for children with CP may have changed since then.

One of the reasons I was diagnosed is that I was very late to stand and walk, and when I did, I tended to walk on tiptoe. I had physiotherapy sessions regularly at hospital, and was given exercises to do at home, which my parents did with me - simple things like walking on my heels, kneading dough/plasticine with my weaker hand to strengthen it, and so on. I continued having those appointments throughout primary school.

At school I had a support assistant to help me with practical things. PE and changing for PE were difficult. I had a uniform with buttoned shirt and tie, which I couldn't manage independently until age ten or so. I needed assistance with dressing myself in regular clothes until a later age than most children, but got the hang of it eventually. I went to a mainstream school - a special school was an option but because I was academically able my parents were against it. I'm assuming your DD is young and this is a few years down the line, but you'll need to look into getting an EHCP (education, health and care plan) for her at school. My support assistant also used to take me out of class to work on activities to develop my motor skills. I remember doing lots of knitting!

I know there are various orthotics available to help stabilise the weaker leg. I didn't have any as a child but I know others who did and said it was helpful. I'd suggest that if they're recommended to you, you do a bit of reading and see what you think. I also didn't have any support past the age of 10/11 because family issues meant there was nobody to organise hospital appointments and such, so I can't say anything about how that support would change over time if you went through the process properly.

Potential issues:

  • emotional dysregulation. It's hard to know how much of this is CP and how much is personality/other issues, but I had a lot of trouble with this as a child and was very frequently overwhelmed and tearful. I've since read that it's more common in children with CP, because of what amounts to 'white noise' in the brain.
  • fatigue. I have to manage my time carefully, I need more sleep than other people, and physical activity tires me out more quickly. Too many activities in one day aren't a good idea.
  • flexibility. I wish I'd known about this when I was younger as it's starting to cause issues for me now, but I'm naturally very stiff and inflexible, and it gets worse if I don't have a stretching routine.

I also wish that my parents had been more honest with me about my differences, instead of trying to hide it from others and telling me to pretend to be 'normal' because having a label was bad. I think attitudes have changed somewhat since then so this may not be an issue for you, but I think I'd have had a happier childhood if they'd been honest about my problem and my limitations - the difficulties were still there, acknowledged or not.

Another thing to note is that it was a much greater problem for me when I was a child than in adulthood. In school you're made to do the same things as everyone else, and it's really obvious when you can't. In adult life I can play to my strengths and avoid activities and jobs that my CP would make difficult for me. There are a few everyday tasks I struggle with, but mostly I find workarounds - my point being that if your DD finds things difficult, try not to catastrophise!

Sorry, this is quite a lot! I hope some of it helps, and I'm happy to address more specific questions if you have them Smile

AnnabelleQ · 25/10/2021 20:54

Thanks, that’s all really interesting. I’m trying to get my head around it all and how much it will affect things. At the moment, it isn’t very noticeable on her and doesn’t seem to bother her much but I’m wondering if that will change much? I also did wonder about what you said re things being easier to manage as an adult because you’re more in charge of what you do. Sounds like stretching and physio will be key! I wonder if the calf difference will continue increasing so it causes issues that will need an op for example, from just 1.5cm now, what do you think?

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delilahbucket · 25/10/2021 21:14

My brother has it. Doctors said he would never walk or be a "normal" child 🙄. He's in his 20's now and really if you didn't know, you wouldn't know. He has a slight limp and his right side is a lot weaker, but he's a regular gym goer, obsessed with staying healthy, and this helps him. The only real difference to his life of late was that he got his Covid vaccine early as he was put in the vulnerable group.

AnnabelleQ · 26/10/2021 06:49

Oh that’s really interesting, I don’t suppose you remember what it was like when he was around 5-ish, how if presented itself? Trying to sort of estimate how much development will change things and what treatment she might need. I’m really trying to focus on stretching now we know, she doesn’t like doing them so I’ll need to try and inspire her without worrying her - also trying to get her into yoga as thought that might help!

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AnnabelleQ · 26/10/2021 06:57

@delilahbucket sorry meant to tag you, thanks again Smile

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Bobblesock · 26/10/2021 06:59

Hi OP. Had she been diagnosed with hemiplegia? This organisation are meant to be good contact.org.uk/help-for-families/information-advice-services/health-medical-information/hemiplegia-support/ I think there may be a face book group too.

delilahbucket · 26/10/2021 07:12

@AnnabelleQ he was physically behind for a long time but was catching up by the end of primary school. He took part in lots of sports which probably helped.

AnnabelleQ · 26/10/2021 07:21

Thanks - she hasn’t actually been officially diagnosed yet but we had one consultant app and he said he thinks it’s CP based on his examination (I actually asked him after googling how he explained what he thinks is causing it) so we’re now taking things from there. It’s definitely mild now, as in not really that noticeable, but he did say she might need things like Botox injections/splint/cast etc

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AnnabelleQ · 26/10/2021 07:22

Sorry that was to @BobblesockSmile

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AnnabelleQ · 26/10/2021 07:23

@delilahbucket perhaps it helps if I encourage lots of exercise and sports, as long as things that won’t make her feel bad if she isn’t as good at it. I feel proactive then too and that it might be helping her long term.

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horseymum · 26/10/2021 07:57

I don't have cerebral palsy myself so not sure I'm qualified to speak but have worked with lots of people who have it. Keeping fit and flexible seems really important for them. Horse riding can be brilliant as it can help with muscle tone, whether it is too high or low. CP sport has run youth cafes etc during covid. There are lots of great role models out there. It must feel a bit overwhelming.

AnnabelleQ · 26/10/2021 21:47

Thanks @horseymum - this really helped. Until we had an appointment this afternoon and they confirmed she will most likely need to wear a brace all the time, potentially until she’s an adult or even still when she’s an adult. It’s totally thrown me because I just thought it wasn’t that obvious and a relatively small issue and now I’m really worried about how she’ll feel about that Sad

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Wigglegiggle0520 · 26/10/2021 22:05

Yes my DD does although she was diagnosed at birth.
She wears a splint on her left leg to discourage toe walking and has had casting.
Kids adapt really well and I’ve been honest with her about it. Class mates don’t even notice her splint now because they are used to it and DD knows what to say when asked about it.
DD struggles with core strength as well but that’s probably because she was prem so we have tried to encourage a lot of sport from young. Bike riding, swimming and martial arts.
It’s very up and down. We’re so proud of her and how far she’s come but it is upsetting to see how much she has to go through.
Flowers

uncomfortablydumb53 · 26/10/2021 22:20

I have Left Hemi CP and happy to help

AnnabelleQ · 26/10/2021 23:18

Thanks @Wigglegiggle0520 - sounds like you’re both coping really well. I’m useless at stuff like this because I can be a bit self conscious which I’ve learnt to hide well but DD is the same and I’m not sure she’ll be able to cope as well as some kids could with wearing something different?!

@uncomfortablydumb53 how does yours present itself? What’s your view on a leg brace? I’m just confused as DD doesn’t noticeably have anything wrong with her, takes a professional or someone really looking to notice, so is it worth wearing a brace do you think? Can it get so much worse for her back/leg/rest of body as an adult if we don’t act and take all intervention now? Will she need to wear a brace for life once it’s decided that’s good for her? Sorry so many questions! My head is a bit all over the place with it all!

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uncomfortablydumb53 · 27/10/2021 02:01

I'm 56 now I was noticed by My Mum to lean to one side when trying to sit, so I was taken to GP
I was born at 33 weeks so I imagine they were looking out for possible issues. I think I was diagnosed at approx 18 months. My CP affects my Left side,I walked late, about 3 I think. I remember weekly physiotherapy and visits to an occupational therapist( to find ways of managing eating dressing etc)
I went to mainstream school and achieved well. Now I imagine your DD could have an educational plan to help with any schooling difficulties.. I didn't wear a leg brace as such but did wear a built up shoe.I still have 11/2 inches shortening, but have also had a few operations Every child with CP is different depending where the damage in the brain occurs and I would be guided by her paediatric team.
Lots of children do have braces( AFO's) but her needs will become apparent as she grows.
I'd say the most important thing is to help keep her flexible, swimming and joining in with family activities
She will surprise you every day!
Happy to answer anything else as I can imagine your worries

uncomfortablydumb53 · 27/10/2021 02:06

Meant to add, my Hemi has never held me back in life.
I worked until I had my first DS( I have 3) and am still mobile now, although I admit, I do have more aches and pains these days
There is a very nice group on Facebook called Hemihelp, which you'll find interesting and reassuring( if on Facebook)
If not I believe hemihelp still has a website

Medicaltextbook · 27/10/2021 06:44

I have CP, affecting right. I’ve got weakness on the right and my hand doesn’t work as well. I had a brace growing up and have on again now in my 40s (things got a bit left off when I left paediatric services).

It has made me more tired and would say it has affected my life, but I live alone, got a degree, working full time.
The Scope charity has some resources but I don’t find it as helpful as I used to as it expanded to cover a range of disability (used to be The Spastic Society).

2020onandon · 27/10/2021 07:15

@AnnabelleQ my twins were diagnosed with mild cerebral palsy 3 years ago. It was also said that one had 1.5cm difference in leg length, however after being referred to Orthotics this was dismissed. They both have regular physio (and given a daily program to follow) which has helped so, so much, especially in terms of less falls, more stability and balance.

I would highly recommend Cosmic Kids on YouTube. Their Physio suggested it during an appointment to make the stretches more fun, and it really is great. Each one is a different story and whilst they engaged with that, they seem to forget all of the stretching they are doing along the way.

Wishing you and your DD all the best.

AnnabelleQ · 27/10/2021 07:26

Thanks @2020onandon - we have started doing that at bedtime every day! I do it too so she has someone with her - I love a bit of yoga haha. What did orthotics say or do? Did they recommend a splint at all? That’s our next app.

@Medicaltextbook and @uncomfortablydumb53 Thanks for your experiences, can I please ask how much your leg was affected by it when you were little? Trying to gauge how much help DD (Chloe) will need with it over the years based on what she’s like now. I just don’t feel like it’s that major, as in I was shocked by what they were telling me as I could barely see it, it was just a slightly funny walk when you really look. So I’m wondering if there’s a chance it won’t affect her with aches/pains as an adult for example? Thanks again for the support and experiences Smile

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KevinandRainbowlina · 27/10/2021 07:33

Following as DS has a noticeable difference in leg length and cannot use his left arm and hand in the same way as his right. The waiting time for an appointment with a paediatrician is likely to mean he won't be seen for at least 6 months which really worries me. Just want to know what the future might hold, and what we can do to help our little one who wants to be on the move!

MargaretThursday · 27/10/2021 07:59

Not cerebral palsy, but I discovered in my 40s that one of my legs was shorter than the other when I went for physio with back pain. It would be less than your ds (it's about 1.5cm now) but I have risers in my shoes and since I had those my back pain has disappeared. So if he's being treated straight away that should help him.