Cerebral palsy - experiences please!

[AnnabelleQ]

Hi, DD has cerebral palsy, she’s 5 and we’ve only just found out. It seems to be very mild but she has an appointment to discuss AFOs, and Botox injections etc have been mentioned for further down the line. Has anyone had experience of very mild CP? I’m wondering if daily stretching and physio can be enough to manage it long term? Thanks for any advice.

I'm a carer and have cared for adults with CP.

Physio physio physio.

I cared for a lady that couldn't be bothered (her words) to do her physio as a teen, and her parents didn't make her. She is a 34 year old permanent wheelchair user now.

Thanks @Boopeedoop I will make that my mantra! Can I ask how mild or severe she was please, as a child, do you know? DD’s isn’t actually that noticeable (why we’ve only just found out) but I’m trying to work out if we can keep it this mild with physio?

Senco here, I agree, physio is your friend here although your DD may see it as her enemy! I’ve seen children go from having relatively good movement to being wheelchair bound too.
Lots of swimming, maybe gymnastics club, horse riding etc to keep her as active as possible.

@AnnabelleQ

Thanks *@Boopeedoop* I will make that my mantra! Can I ask how mild or severe she was please, as a child, do you know? DD’s isn’t actually that noticeable (why we’ve only just found out) but I’m trying to work out if we can keep it this mild with physio?

If you think about how flexible you were as a child compared to how flexible you are now, it shows that flexibility naturally reduces as we age. The degree of CP she has won’t change, just her flexibility as she gets older unless she works hard at it.

Thanks @Soontobe60 this motivates me to really focus on that. I suppose I’m trying to manage expectations and accept how much good it can do though, if that makes sense? Can we work on it to the point where the impact stays the same as it is now?

I have a 14 yro DS with CP, he is moderately affected physically, currently in a wheelchair full time learning to walk again after a big hip op (he is unusual in needing this as is mostly children with CP who don’t walk have this same problem)

Pre his hip deteriorating he was walking independently, he has had multiple Botox treatments, calf muscle lengthening and various AFO’s. He was diagnosed at 22 months.

Physio and activity are really important, stretching is key, keeping walking and acting as soon as gait looks impaired/different have all made the difference for him (covid did for him, he was listed for op March 2020 but didn’t have it til sept 2021 resulting in a much bigger op and recovery)

Good luck!

I think that very much depends on what area of her body has been affected. Her physio will become your new best friend here. All the physio’s I’ve come across in this field have been amazing with younger children!

annabelleQ you can probably work on it to maintain the range she has, as a previous poster said her range will reduce commensurate with age as it with any of us.

She sounds mild, how/why was she diagnosed?

@Soontobe60 it’s her left leg, and seems to be just knee down currently. She walks without visible issues, you wouldn’t really notice at all, apart from some tip toe walking intermittently. The calf muscle is tight though and apparently the leg a bit shorter/foot a bit smaller.

@Arriettyborrower I hope the recovery goes really well for him. The physio told me it can affect hips eventually. How was your DS affected when he was my DD’s age (5), was it the same level then? Thanks

My friend was part of a team doing intensive physio and exercises for a another friend's son who had CP. The initial prognosis from the medics was that he would have very limited mobility - but the intensive therapy really helped. Last I heard he was walking unaided - obviously more complex case than your DD - but the physio really made a huge difference to that little boy.

DS is almost solely affected on the left side hip down, he has a slightly shorter leg.
Your DD sounds a lot less affected than he was, at 5 he had already had Botox about 5 times, had been cast post Botox and wore day and night AFO’s. He also used a wheelchair for distance.
He had his calf muscle lengthened at around 9, this had a good result and he started walking for longer and further which obviously helped maintain and improve effect.

Hi, I work with young adults who have additional needs, some of whom have CP.

As everyone else has said it's all about the physio. It's not the time spent one sessions though but the work you put in in between. Ask for ideas for how to build it into play and later into daily activities - that will make it less of a burden and your DD is more likely to engage.

I had a mild CP 18yo recently who was heading to uni. She had a slightly increased risk of falls and we got her a couple of extra grab rails in the bathroom - more for her feeling of security then a physical need and it was easily arranged. There's no reason this should hold your DD back in any way!

I have CP. I didn't even know I had it until my 30s. I was diagnosed as a young child but my mum didn't tell me. I always just thought I had a wonky leg. I am very uncoordinated, my leg is very often sore and my back gives me bother but it has had no real impact on my life. I spoke to the GP who confirmed after further discussion I do have CP but very low end of spectrum. It's a strange thing because it's such a big spectrum. Try not to worry, you know your child best, it's a big label but mightn't be that meaningful in reality.

Ps. I did physio as a young child but nothing that was unmanageable and nothing past aged 4ish

My 19 month old has cp along with hydrocephalus and epilepsy. It affects his right hand side. He wears an arm brace for an hour a day and is getting an AFO next month. He cant stand up or walk etc unaided. He gets physio every 2 weeks but he has been going through major separation anxiety and hasnt been cooperative lately.

The reality is most adults with CP end up using mobility aids as they age, a lot of the time because it helps with stamina and independence. But the more independent you are as a child or teen the better.

I’m nearly 40 and have CP. As a teen I walked at home and partially at school used a chair for distance. Once I reached my early 20s I started using my chair more and then got a powerchair as I can’t drive.

I am fully independent in all activities of daily living apart from compression stockings (which I need for another condition). I live alone and have a cleaner weekly. I have a degree and do voluntary work. I travel by train weekly and have flown abroad by myself to visit friends.

I walk a tiny bit still and stand to transfer but most people think I’m fully reliant on my chair. But the reality is in my chair I can grab the washing basket from the bedroom and get it to the washing machine. Or take the bins out. Or carry my dinner to the table. I am not “wheelchair bound”, my wheelchair gives me independence.

I grew up with others with CP the same age, looking at us all now, I think parental attitude has a huge role in adult independence with it.

Thanks all, I’ll really focus on physio and she is doing lots of fitness classes. I’m almost in shock they said they might fit her for AFOs (splints) soon though - she manages fine, you can’t really tell and for example she walked a mile uphill yesterday followed by a park play. So I’m trying to accept what lies ahead for her but I can’t seem to because they say it isn’t degenerative, rather the symptoms develop due to ageing, but as her symptoms are so mild, what kind of development can she expect over time?

I have mild cerebral palsy affecting mostly my left leg. I had botox and AFOs and a couple of operations for it when I was younger. The operations required recovery time but that was the worst of it tbh. I'm now 27 and I work full time as a nurse. I have some issues with pain and stiff joints/tendons etc but nothing unmanageable. It will be tough at times for you and for her, but it will work out. Good luck :)

Paediatric nurse here. As others have said; physio physio and more physio. Botox also gives very good results.

I have a friend a couple of years younger than me (so mid 30s) who has CP down one side. She wears one AFO, still walks all the time, but started needing a stick when she was pregnant (kid is 10 ish I think) and has kept using it when out. Pain and stiffness has been more of an issue for her recently too.

Thanks, I feel like I’m spending my evenings and any spare time googling it and thinking about it non stop! I haven’t heard of anyone with very mild CP where it could just be left and didn’t affect them as an adult (which is how DD is now, pretty much unaffected on the whole). Such a shame it won’t just stay like it is now!

My ex had very mild CP. only time you could tell was a small limp when tired

Hi i used to work with kids with CP and AFOs. Sounds like your LO is a mild hemi? Mainly agreeing with everyone else re physio and also to really keep an eye on things during growth spurts as kids can get tight quickly. Most young people with mild hemi CP seemed to stop wearing AFOs during teen years (usually because they didn't like the look of them) and maybe would just have an insole with a little raise if the affected side is shorter once they stopped growing.

That’s interesting @DaisyDreaming - sorry to quiz you but I don’t suppose you know what he was like as a young child? Did he have any intervention at all like splints/Botox/ops? Can you tell I’m desperate for info!

And @cillacilla so useful to know, thanks - I wonder what the mild hemis would have been like if they hadn’t worn AFOs, I’m struggling with her needing to wear them when it’s currently so mild but than totally understand the growth spurt issue. Did you work with many mild hemis where it didn’t progress much?

Hi annabelle. Difficult to say as most kids who did not wear AFOs at all did not come into in our service. If very mild then the MDT might decide to not go down the AFO route initially and maybe just have one insole but even if very mild often these kids around the ages of the big growth spurts kids would need an AFO for a few years.

I would see what the team think and the good thing about AFOs is they come in different styles in terms of how flexible they are and also if you just aren't getting a benefit/don't think its helping you can just take it off and revisit the idea if your daughters presentation changes.