Cerebral palsy

[AnnabelleQ]

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

We’ve also done lots of the one stretch they showed me at physio, plus cosmic yoga - I do worry I don’t know enough stretches or I’m not doing the one I know correctly, making the problem worse for example, I guess I need more physio advice from good therapists?

Oh and I also bought her some rigid sole ankle boots - my thinking being they would stop any attempt at tip toe walking on that side outside?!

That's brilliant You're doing all the right things! I was going to suggest supportive boots!
They used to provide Piedro boots on NHS( not sure if this still applies) before anything else.
Don't worry that you might not be stretching correctly. You're keeping her flexible and that's what counts, along with the ballet they will really help DD
It's fantastic she can walk for such a long time
I'd just be guided by the paediatric team, rather than physio, especially as you're doing all that they would suggest for now anyway

Annabelle he was classified as an S9 para swimmer.
He will continue to do most of his training alongside abled bodied swimmers but compete against swimmers with similar abilities.

And to give you an idea of how he presents compared to your DD he scored as having severe restrictions in range of movement/spasticity in his feet, moderate to severe in his lower legs and mild to moderate in his upper legs. Them mild in his upper left hand body.

He's still ambulant, has an odd gait but it isn't completely obvious and lists slightly to one side in his shoulders.

So like you DD and her dance - she'll find her own way. Worthwhile having a look on you tube etc as dancing with disabilities is becoming much more common. There's some fantastic footage of the para Olympics opening ceremony.

Thanks @uncomfortablydumb53 - I’ll keep trying to do as much as I can. So it’s just keeping the foot and calf flexible do you think? Will that help with leg length difference over time as well, as in does stretching it prevent the difference increasing further, or is that part of it out of my hands?

@itsgettingwierd sounds like swimming is a great passion for your son. Chloe does a very kiddie classes at the moment, nothing very advanced level at all, but I hope she’ll keep having physical hobbies as she grows up. I thought about telling her about the paralympics, in a sort of inspirational way, although I almost feel like a fraud because her leg is so unnoticeable, would she even see herself in the same way?! Does that make sense?! Perhaps it will become more noticeable, to her and others, though?

I think the para olympics helps because it shows a whole range of disability. And shows that whatever level of impairment you have you can still do stuff.

This is a S9 swimming 50m . The same sport class as my son.

It'll be interesting for you to watch.

@itsgettingwierd I’m not sure she realises yet she has an impairment at all! Maybe this is what I’m trying to get my head around, how she can go from no obvious physical impairment to having an impairment, and this is what’s making me feel so uneasy for the future I think, wanting to know what level it will be.

Thanks for the link @itsgettingwierd - will watch when my daughter wakes up! She’s next to me sleeping, I tend to sleep for a few hours only at the moment and then the brain starts ticking!

Hello Annabelle. I have a nearly 2-yo with CP. She’s a right hemi. Diagnosed during the pandemic. Very hard to get your head round and understand everything. There’s a lot of good advice on this thread - thanks for starting it. It has reassured me a lot.

Many of the qus I have that the docs are reluctant to address are about what the future holds. This thread has been really helpful.

Regular physio and possibly OT sessions (if hand and arm are affected too) should be available to you locally. You can of course book private physio. If you have the means and you’re waiting six months for your paediatrician appt I would say this is a good idea for peace of mind. Not sure if I followed that right from your op, sorry.

All professionals in my daughter’s care have recommended swimming, cycling and horse riding. Now that you’ve mentioned it I’m going to look into ballet. She doesn’t need splints yet, but is about to be reassessed for orthotics. Her disability is revealing itself more as she grows - this may be the case with your daughter too. And why it hasn’t been spotted earlier. With us it’s more obvious as her hand and arm are visibly different.

The physio and physical exercises are really important - so we’ve been told - as every time they grow, the new muscle growth is weaker and requires working on. Without physio my daughter would lean to one side more, fall over more, and be generally weaker. The physio is quite simple at our stage.

Depending where you are in the country I can recommend some good physios. If Chloe’s upper limb is affected look up the REACH programme at the Evelina in London under Dr Anne Gordon.

Things that are on my to do list: apply for DLA (to access more funding for her nursery), EHCP in time for school, regular (annual?) gait assessments for splints/orthotics, watching our for any emotional issues. Although as pp said, I’m conscious she’s also a regular, spirited and demanding young woman!!! Have you been offered a MRI? This will show you where the brain damage is located and could give an indication as to how it will develop.

Such a shock when you get the diagnosis. As you say, so hard to get your head round. So many questions about what the future looks like.

Great to read many positive stories here.

When I say how it will develop - obv CP is not degenerative. I just mean which areas of the brain are impacted. Whether it’s limited to motor skills.

Thanks @InfantHercules - so good to hear from people. Yes I wondered about an MRI. Although part of me thinks that wouldn’t really show much for the future and involves her being sedated. I shouldn’t decline it though, should I, if they offer - especially if it could check it isn’t something worse and even more degenerative.

Interesting you mention emotions. DD’s teachers have said about her not always following instructions, almost like she isn’t really listening - in a very innocent way - but this is very subtle. She also struggles with emotions, she’s so lovely and sweet and then will get worked up and have such a tantrum - it’s hard to tell what is just her personality/being a 5 year old, or whether that is linked to the brain issue affecting her leg muscle.

I’m really struggling with the orthotics because it makes what she has visible and I guess it’s invisible right now (unless you’re aware and really looking at that leg). I don’t know what to do if they do start recommending them soon!

I can fully relate on the orthotics front. Pretty sure my daughter will be given them at her next assessment. She doesn’t need splints for now, but we were warned it would be an o going thing and change as she grows.

Emotions… lack of concentration and focus, and inability to control temper are what we were told to look out for. However, all these traits describe my 6-yo!! I do wonder about being too quick to jump to conclusions.

Hard isn’t it! A new world to navigate.

Absolutely inability to control temper for DD! She has probably inherited some of the temper from both me and DH but then the CP adds an extra level of lack of control - altogether it means she does lose it way more easily than other kids her age. Getting much better as she gets older though.

As regards predicting the future… I have a theory that very mild cases of CP at the level of your and my DDs were probably not diagnosed as CP 30+ years ago. (Indeed it was not easy getting DD diagnosed, we were told all was fine by various HCPs until we used our insurance and went private). Most of the adults with CP that I read of online needed (at least) aids to learn to walk, so must presumably be more affected. Therefore, I suspect most of the data and stories on how CP affects older children and adults will be in relation to more severe CP, and there simply isn’t a lot known about how the very mild end do over time.

Massively insightful minipie.

Does your daughter have a EHCP out of interest? Mine def has a temper and I’m just trying to wait and see whether I think there’s more to it than a demanding 2-yo. Good to hear yours is coping well. I think we are close to being signed off as cognitively ok, so mainstream school looks likely for us. Which is good news as our local primary is brilliant.

I have def noticed the neural fatigue element as mentioned up thread. My daughter has huge daily naps which aren’t to be messed with. Not a factor with my other kids.

Annabelle good luck with your next steps.

PS itsgettingweird great link thanks. The Paralympics took on new meaning for us this time round

Hi InfantHercules no she doesn’t have an EHCP. There hasn’t been any stage at which her needs have been greatly different from the average, so I didn’t think we would get one so didn’t apply. Same applies to DLA. Some things are definitely more difficult (especially sleep and temper!) but not really in any way that money or extra help at school would help with iyswim? She is flying academically and can join in with everything without any assistance. I never tried applying though so who knows.

She does have a weekly session with the school Senco (to help with emotional management and a bit of fine motor stuff/handwriting) but that’s it in terms of extra help.

What we have mainly needed from school is understanding about fatigue/behaviour. Eg she did have to have some days or half days off across reception and y1 but not since.

Interesting theory @minipie - this is what I’m struggling with, I almost need to hear about some people as mild as DD who didn’t wear splints and how it turned out for them, to trust the Orthotics person when they say the splints are essential. I am expecting that at the next appointment so I’ll need to trust their opinion a lot there to make the mental impact of wearing AFOs worth it! We haven’t seen a consultant on the NHS yet, only a physio person. The private doctor we did see a couple of weeks ago, the first person to see her, interestingly hasn’t said AFOs yet, he said to see his colleague initially in a few weeks (for a second opinion I wondered as the colleague is paediatrics and he is orthopaedics) and then he said we would go back to see him in 5/6 months to see how she’s getting on. I just can’t stop questioning the need for AFOs and don’t want to make the wrong decision!

Oh bless you @AnnabelleQ It must be so confusing for you
At DD's age I went to physio weekly, just for stretching and balance really and appointments with a paediatrician and orthopaedic consultant yearly. Now please take on board that I'm more severely affected than DD but paediatric team looked for the hidden effects( such as emotional dysregulation))
I am very short sighted and I now realise I have dyscalcia and problems with 3D shapes!
It's very hard to predict the length discrepancy which I'm sure you're itching to know! Orthopaedics will examine her and watch as she grows. Personally mine wasn't apparent until growth spurts during puberty. Only then I need orthopaedic intervention.
Trust me, you're doing everything possible
Swimming can be very helpful to keep her muscles flexible

@InfantHercules

PS itsgettingweird great link thanks. The Paralympics took on new meaning for us this time round

It really does.

I think people have in their head an idea of what disability is and people in wheelchairs tends to be everyone's idea or the blade runners and amputees.

When you watch events like above it makes you realise that people with disabilities walk among us all the time. There's such a wide range.

And although it's always called disability it doesn't mean there isn't ability within it. The ability to find your strengths and work on them. Find your sport and compete in it.

I find the para Olympics a great platform for challenging people's preconceptions.

When someone tells you your child had CP or similar the immediate thought is always going to be "how will this affect them , what won't they will able to do, how different will they be etc"

It's so empowering when you can think "despite my child having difficulty with X limb due to CP - they can do .......,they've achieved ......."

The link made me feel emotional, in a good way, in that I’ve always been impressed by the paralympics but it felt a bit closer to home suddenly. I follow someone on Instagram who is paralysed from the waist down following an accident (rather than CP) - clearly it’s totally different to what’s happening with DD where it’s so mild (and will hopefully stay that way, everything crossed), but he is so inspirational as he has an amazing mindset. He also paints the most stunning paintings with his mouth, it’s unbelievable. He’s crossed my mind several times a day lately because of his positivity. Trying to think more positively myself as I’ve been worrying so much about DD. Between trying to work on that and DD’s stretching/classes, I feel like I’m trying to feel proactive and stay on top of the fear and worry!

@uncomfortablydumb53 re the leg length, yes the private consultant did warn me that teenage years could be a tricky time in terms of development and needing intervention. Still makes me feel quite wobbly thinking about that, but I guess I can only focus on trying to make the right decisions with her as we go along? Also would acting now with AFOs for example help decrease the likelihood of intervention later. I am bad at decision making and trusting advice at the best of times yet alone when it feels like there’s so much riding on it!

I understand completely how you feel, be guided by the professional advice, but you know Chloe best and see how she functions in daily life. They know how she appears in front of them.
The aim of AFOs are to support her and maintain her foot in the correct position
From what you have said, at the moment she is managing amazingly well, especially as she's now 6.
There are lots of things which can be introduced if it becomes necessary( AFO, casting, Lycra splints and muscle relaxant medication) with tried and tested surgeries if it should be needed
BUT I stress again that she is very mildly affected. I'm sorry there's not a definite answer for you, but be reassured that at her age, she will almost definitely remain mildly affected and you are doing everything you possibly can.

Absolutely agree about you knowing her best.

I've built such a strong relationship with ds neurologists and they listen to me but also when I ask questions they find the answers.

A good balance between them saying "we recommend because ...." and parents saying "I see and observe, my child would like because ..." works best.