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.

Thanks @cillacilla, I’m going out of my mind a bit with worry today! It’s almost like I’m dreading her development and growth spurts which is not how you want to feel is it! I feel like age is going to take her from barely noticeable or affecting her to something more challenging. I wish I could keep it this mild for her - perhaps too much to hope for?!

Aww annabelle :( it must all be a big shock but remember your little girl hasn't changed she's just been given a diagnosis and can still do everything she wants to do. Has she got any interests that she could start going to clubs for like drama or swimming etc? Lots of our kids would be coming in to get their new AFO with their muddy football trainers etc it was just a small part of life like going to the dentist for checkups etc. Things will feel more normal soon xx

Just remember, kids adapt and she won't know any difference. This will always be her normal. For me growing up and even still now I don't really notice it day to day because I've never known anything else. There will be frustrating times for both of you but for the most part I promise she will be fine and she will adapt, and you will too.

Thanks @cillacilla yes she does ballet, yoga, swimming twice a week and gymnastics. We find it hard to factor in proper physio time as today for example she wanted to play with her sister and is now drawing a picture, and it’s hard stopping her doing these ‘normal’ things to try and get her to do quality stretching. I will keep trying though, every day. Thanks for your support, helps so much when people reply on here!

@Mousecat94 thanks so much too - yes I think I’m still in shock! Also I posted on the Scope website and someone just replied discussing pros and cons of AFOs. This is exactly what I’m worrying about with those - the cons she mentions. I don’t know how I’m going to get more info on these - it’s impossible to know whether people are better off with them or without them when it’s so mild! I don’t want it to get a lot worse if she doesn’t wear them though!

I don’t know if this is helpful. But I have two younger siblings, both able-bodied. We all used to play “wheelbarrows” with our Dad. I thought it was huge fun! A couple of years ago I was reading a book where the main character had a daughter with CP and they did the same thing as part of the physio routine. I had no idea it was physio until I read that and asked my dad.

Also you maybe able to some physio via positioning (as a child I used to do hip stretches by lying in a certain position for a set amount of time and read at the same time, a friends child uses a standing frame and paints while in it)

I wrote a big reply to this and it doesn’t seem to have posted… my husband has mild CP, down his left side. If you didn’t know; you’d never guess. His left calf is smaller, but other than that, he’s pretty unaffected. He stays fit, he’s strong, he swims for flexibility. He doesn’t have any pain, I don’t think he’s done physio since he was a child. He explored Botox but they didn’t think it was necessary in the end… he hasn’t had other treatment. He’s never needed mobility aids and doesn’t take painkillers.

I can’t remember what else I said; but I’m happy to ask him anything you’d like to know

Thanks @playmelikeasymphony this is exactly the sort of thing I need! Things I can make fun and fit into her daily life. Do you have CP then? How does yours affect you? Does the wheelbarrow help with legs - it’s just DD’s left leg it’s affecting.

@TakeYourFinalPosition that’s so interesting. When was he diagnosed? How did they spot it? Can you please ask him what he was like as a child around 5 if he knows? Were there ever any other symptoms other than the smaller calf - did he ever tip toe more on that side for example? So many questions! Thank you

My DS has mild CP, he's diplegic rather than hemi, so both his legs are affected and he has a slightly weak core.

He was diagnosed at 2, and you are (understandably) asking the exact same questions as I asked.

He has had - Botox, AFOs, tendon lengthening and the usual physio. He found night splints preferable to day ones after about age 7. We tried to do a bit of daily physio, just a bit first thing and evenings and I really tried to keep up with this. Trampolining was a brilliant exercise for strength and core as was swimming.

To put your mind at rest - he's 21 now, drives a manual but finds an automatic easier, works a fairly physical job FT, has a bit of moderate pain at times, doesn't do much physio, has a lovely girlfriend, gets a bit more tired than others, can't really 'run', has a slightly noticeable different gait, isn't remotely bothered at all by his CP.

I was so worried the whole of his childhood about how things would be as he got older and no-one could (or would) ever really say. The one thing we tried hard to do was to keep him ambulant and out of a wheelchair. As an adult he is pleased we did that although he does use a mobility scooter at times
(Really rarely, more like Madge from Benidorm I'm sorry to say - if you don't know the programme, Madge is quite old and uses a mobility scooter on holiday, because she's on holiday and doesn't want to walk!! DS is a bit like that, rides the scooter, swigging beer from a can ). I keep trying to encourage him to take up Pilates now, for core strength and flexibility but haven't persuaded him yet.

His CP hasn't ever stopped him doing stuff he wanted to do - he's never skiied, but says he's never wanted to, same with football. In fact he pretty much stopped games/PE at school around 13. Not ideal, but he is incredibly strong-willed and wasn't going to do something he didn't want to do/couldn't do well. School were very understanding.

Please be reassured by all this and all the PP's answers - your DD will be ok and the treatments and help are getting better all the time and you don't have to spend hours and hours on physio, but some is a good idea.

I hope all this helps ☺️

Thanks @Da1sycha1n yes it really helps to hear your son’s story. How much was it affecting him as a young child - so around 5? When I look at videos of my daughter first walking (15 months), you can’t see anything different. It’s only now at 5 I can see a bit of tip toe walking on that side and she had a problem getting that foot as far into a pair of slider slippers, plus I asked her ballet teacher to really look and she said the only thing she noticed was she struggles to skip in the same way the others do. Just seems so mild to be given AFOs soon and the downsides of those?!

@AnnabelleQ wheelbarrow is to help with arms and I think maybe core too.

I have CP, classified as spastic diplegia, limited use of both legs and some arm involvement mostly fine motor related. Pretty much a full time wheelchair user because I have rubbish balance - I can walk but I can’t really function on my feet.

I feel a bit like I had surgery, did physio, wore AFOs as a child etc and it might seem like a wasted effort to those on the outside when I’m so reliant on my chair but I’m also hugely independent, live alone, volunteer travel and if I hadn’t been pushed to do treatments as a child I probably wouldn’t be. Yes, I’ve deteriorated but because I was so supported it’s probably less than otherwise.
Riding for the Disabled was a huge part of my physio as a child but I just saw it as a hobby.
If you’re on facebook there is a group called something like adults with CP advising parents of kids with CP.

Also, bear in mind that the professionals only know about there area in detail.

I had botox and serial casting at 30. The neurologist was sure I needed another tendon release surgery afterwards. When I saw the surgeon he said no and didn’t understand why I’d been referred.

The physio who did the casting was adamant I needed AFOs again and told me I should never have stopped wearing them as a teen (despite my orthotist at the time being the one to stop it). She was harsh and upset me. She got me a joint appt with her and an orthotist who said he couldn’t make an AFO that would help.

@AnnabelleQ My boy is 21 with severe CP. He's worn AFOs for 19 years. He got Botox and phenol injections for a good while under general anesthesia before major surgery on his legs,ankles and feet at six. Feel free to message me.

Hi I've had hemi since age 3. Echoing what others say, physio physio physio. As a child I did it twice a day, you want to maintain what movement she does have and stretch the muscles with it so she doesn't get too stiff. I had AFO's up until my late teens, they were great in terms of support when walking, keeping my heel down and preventing the tip toe walking. Shoe shops are so much better now with accommodating children with AFO's too.

In terms of extra activities, I did swimming and horse riding as it helps with core strength too. As a child I was pushed and very supported by my family with my physio and swimming and wearing the AFO's and it was the best decision for me, I'd be much worse without all the work put into me as a child. You can make physio into games to make it more fun, also ask for an Occupational Therapist too if you haven't already, they helped with different ways of doing things and had great suggestions for physio games, and ways of keeping my mobility as well as possible. Have a look on Facebook, there are some very useful groups on there with lots of advice.

I posted on your original thread as I have Hemi too
Just wanted to add there are two Facebook groups( which I am a member of both)
Hemi Help.. which is a kind and supportive group with parents in exactly your situation and
Adults with Hemi( which shares tips for coping as adults)
Best wishes to you and DD

I went through primary school with a girl who had CP that affected one side. Her hand, wrist and arm were very curled up in a T-Rex type position (sorry really don't know how to describe it properly) and I vividly remember her mum coming into school to put a glove on her affected hand and her having to use all of her strength to prize her fingers apart. She also wore weighted boots and got tired quite easily.

That was 30 years ago, and I bumped into her a while ago and her arm or hand wasn't tight at all. She didn't seem to use it but it didn't look any different from her other side, if that makes sense. It didn't keep her back, she's a solicitor and doing very well. I remember other school mums talking about her saying she did so well because her mum constantly pushed her, even when she was tired. She was one of those dc who had a full schedule of after school activities.

Just wanted to add following on from my last post, things like Cosmic Kids on Youtube would help with stretching - it's fun yoga for kids and would help with movement. You should be given a physio routine or exercises by a physio/OT that will help her, doing it regularly and keeping up with it is key. Children's physios are amazing at making it all into fun games for them! My mum made sure we did physio every day and kept up with plenty of activities and it has really been of benefit to my muscles and body in the long term. Try not to worry, its a lot to get to grips with initially but once you're into the swing of things, using her AFO and physio will just be part of your normal day :)

Thanks all, I really appreciate the info. I also struggle with trusting the professionals if I’m really honest. Someone replied to a discussion I posted in Scope and talked about the cons of AFOs for very mild cases - they said it locks the ankle to restrict range which may or may not be desirable if there is some decent range already. They said it will also go up and include the calf, which will on the plus side mean it will not fire eg go into spasm, but it will also mean the calf muscle will not be being used when walking in the AFO, so will not bulk up in muscle mass - which can cause problems if you want to be in a position of not wearing it all the time (eg 24/7). This is what worries me about AFOs, or even them just not making enough difference on her to make it worth it - but it’s so hard to know! Could be a game changer as she grows?!

@shylatte that sounds positive, although I guess it’s an argument for intervention?! So hard to know what to do! @FlowerTink thanks, yes I am working on this, trying to make physio fun! And lots of exercise classes too. How severe or mild was yours as a young child, what were the symptoms?

I walked and played like any other child, just with a few more difficulties. I was never wheelchair bound or with a walking frame. As a child I had tip toe walking on that side, stiffness in the leg/muscle, a difference in leg/foot length and calf muscle compared with the other foot. Easily tired too, and you might find this with your daughter, the stiffer it gets the more effort basic things like walking can be. And tiredness can hit out of nowhere. Is her arm affected too or just the leg?

As an adult I don't have any walking aids, I don't wear an AFO, but I still manage my symptoms, planning what I do, physio, things like that. But like others have mentioned in the thread already, how I am today is largely down to all the medical intervention and family support I received as a child :)

I know its worrying but trusting the medical professionals is the way to go. It is far easier using AFO's as a child as they take to it much better and can be more accepting of it than a teenager or adult, and the use of them can make such a difference further down the line. I found I noticed my leg strength would be weaker and I would fall a lot easier without the AFO. It provides a lot of support and helps with the tip toe walking and bringing the heel down, which with having CP could be very difficult for her to manage independently without the AFO. Children take very well to things like this, and other kids will adapt to her at the age she is. I never wore it 24/7, I didn't sleep with it on and had some time with it off in the house. CP is a life long thing and can decline without managing symptoms, so regular physio, stretching, and any medical intervention too. AFO's, botox, Orthotics can recommend shoes or give you special shoes to help with support. Also get a team around you, as well as the drs, a physio, an OT, HV can all provide various practical support and information. Get the school involved too to see how they can support her :)

@AnnabelleQ

Thanks *@Da1sycha1n* yes it really helps to hear your son’s story. How much was it affecting him as a young child - so around 5? When I look at videos of my daughter first walking (15 months), you can’t see anything different. It’s only now at 5 I can see a bit of tip toe walking on that side and she had a problem getting that foot as far into a pair of slider slippers, plus I asked her ballet teacher to really look and she said the only thing she noticed was she struggles to skip in the same way the others do. Just seems so mild to be given AFOs soon and the downsides of those?!

Hi OP, at 5 he was a total toe walker - both feet turned inwards as did his knees and he wore knee high AFOs as much as possible. Because of this he was referred for the Botox initially and for a while that was quite good. After it became less effective he was referred for tendon lengthening which gave amazing results, but was a difficult op and recovery. He was in hospital for a week, and after the op both legs were in plastercasts from his hips to his toes, with the ankles set as close to 90 degrees as possible. Had to remain non-weight bearing for 8 weeks, so used a wheelchair with leg extensions on. We wrongly assumed he would be able to walk as soon as the plastercast came off, but it was about 10 days of gentle stretching before he could even bend his knees, let alone stand up and it took months to re-learn to walk.

With hindsight we may well have continued longer with the Botox as we were both woefully unprepared for the recovery time/effort/pain. However, it got his feet totally flat to the floor and straight, which has remained the case even now.

It does sound like your DD is very, very mild - my DS at 5 and older would have been unable to do ballet. He couldn't stand on one leg without support, couldn't skip or run and fell over A LOT. (He actually still can't stand on one leg, skip or run very well)

Please, please try not to worry. Easy to say, I had endless, silly worries even about whether he'd ever get a DP as we live in such an image conscious world. I worried about whether he'd have the range of movement necessary for an intimate relationship, which is just awful looking back . As a parent though, and with a child with additional needs, I think we just want to be reassured that life won't be too additionally hard for them.

If you'd like to DM me and chat more I'd be happy to Especially about how YOU are feeling about it all, as I wish I'd had someone to talk to about that at the time. It felt too selfish to say "you know what, this is hard for me too..." It still does feel selfish to even write that, but it was hard and my own mental health did suffer, so I hope you are ok and have good support from a
DP/family/friends. I felt very isolated and wouldn't wish that for anyone.

@FlowerTink thanks so much for the advice. I’m a bit obsessed with her physio and activity levels at the moment but at least it makes me feel proactive! So interesting what you say about AFOs. It’s difficult because I’ve heard they are good for functionality - so if a child can’t walk or run effectively without them - but they don’t make any difference to the end result developmentally. I’m so torn on them and worried about making that decision. I watch her today doing dance classes and jumping around and yes it is there when you look for it, a bit of tip toeing and I guess not as agile and smooth as a very fluid child, but she just cracks on with it. So it feels almost harsh to put her in an AFO when she can function without it and I’ve been told there’s no evidence they are preventative?

@Da1sycha1n it sounds like intervention was very necessary functionally for him and sounds like it went well? Your para about worries is so spot on, I’m really struggling not to worry whilst also being aware that right now she’s actually very lucky, but it’s that fear of what’s going to happen, especially if I make bad decisions about intervention. At least I know physio and activities are good for her as I have no doubt whatsoever there! I’m trying so hard not to worry about things getting worse. Friends were really supportive but I’ve stopped wanting to talk about it as I’m aware there’s a limit to how much they will want to hear as this is an ongoing thing (and basically ALL I’m thinking about!) This thread has really helped though

Hi @AnnabelleQ we are in a very similar position with our now 3 year old and I just wondered how you are doing now?