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

My nephew has CP (he's 4) although I don't think it's mild.

The first thing I would say is not to worry too much about her being 'different' in school - kids are way more open and teachers are better trained to deal with this kind of thing these days.
My nephew started school this year. He has a frame as he is unable to walk yet and so far all that's happened is one or two kids have asked what it is and some have asked if they can play with it.

Second, as pp's have said, physio and stretching etc is key. Nephew was a baby who would slump forward or to the side because he didn't have the core strength to hold himself up.
Now he can stand up straight, his motor skills are miles ahead of what dsis was told to expect and he's bloody strong.

The big things are to have a good team (nephew has a physio, occ health, consultant etc) and a good school as it makes all the difference at a young age.

@AnnabelleQ
How old is DD?
All the treatments mentioned are all possibilities, but not probabilities and I'm sure you felt overwhelmed by her diagnosis.
It's hard to predict how she will be affected over time, and her difficulties will present over time as she grows. Does her arm appear to be affected? Perhaps preferring one hand to reach for a toy?
CP causes increased tone( or decreased) which means the muscles pull on the joints as they contract, but there is a wide spectrum of effects and she may well remain mildly affected.
Pain is caused by muscle contractions pulling on the joints which may in time lead to corrective surgery if necessary. It last likely that she will experience fatigue as she uses 3x more energy to move.
Please ask anything at all, and I'll happily answer.

@uncomfortablydumb53 has given a good explanation. Cerebral palsy is so different for each person. Again happy to answer about my own experiences but really it’s a wait and see.

Another thing that might be useful - I have less sensation of pain on my affected side. It means that if I injure myself I will not react in the same way. My parents missed a broken arm because I just said it was hurting and they thought I’d be crying in pain. I recently banged my good foot on a door and honestly felt as painful as my broken ankle on the bad side (except of course it went away in a few minutes). I would never test a radiator with my right hand to see if it was not, no one taught me, I just kind of knew.

My DS2 has worn splints (knee high afos) since he was little. He started with orthpaedic boots (Piedros) and moved into afos as he grew... he's generally floppy toned but as he grew he got tighter... I agree with other posters that Cosmic Kids yoga on youtube is great... I work in special school and we do a session daily with the kids!

He's now an adult, stopped wearing his afos during the pandemic and walks like a drunk penguin but he gets by ok. When he was a (non) toddler we were told he might not walk or talk. He never shuts up, and plays special needs rugby

I was born with it 50 odd years ago
Prem baby late to walk
Affects my right side with one shorter leg
I am left handed
Didn't bother me too much when I was younger, had an op to lengthen tendon but still have a limp
Have to say it is catching up with me as I get older...my balance is poor and once I start to fall I can't stop myself
I am sure there will be more treatment now
I wish my young self had realised how important physio was and that I had been encouraged to go up/down stairs without holding on....have a real phobia of steps without a banister now!

@Munchyseeds
Identical situation here.. except a couple more operations and I'm Left Hemi

@KevinandRainbowlina how old is he? Keep me posted please, I’ll do the same - tough isn’t it, you just want to know what’s going to happen long term so you can get your head around it don’t you!

Thanks @BaublesAndGlitter - what’s so strange is it’s so mild so I can’t get my head around needing treatment! Yes @uncomfortablydumb53 and @Medicaltextbook - I feel totally overwhelmed, and can’t get my head around how it can go from not really affecting her to intervention. I asked her ballet teacher today and she hadn’t noticed anything different at all for example.

So my main concern now is if it’s so different in each person, how can they estimate what will happen long term for DD. And also what if she has AFO for such a mild spasticity (she’s high tone apparently), could it in fact make her worse somehow, over just leaving it to naturally develop and hoping it stays mild? Especially as AFOs will make the issue go from not obvious to very obvious for her and others?

Just realised how many times I’ve said “get my head around it” in those replies - definitely struggling there then!

@AnnabelleQ He's 14 months, so starting to really notice a difference between him and other children. Sounds like his version of CP is more severe than your DD, his right hand/arm/leg preference is pretty marked once you've watched him for a few minutes. He's the happiest little soul which I think might have resulted in me overlooking the obvious for some time when he was smaller. A bit of wishful thinking and of course being a pandemic baby no-one else saw him for months on end. However now we can see the differences emerging I'm determined to help him through it, just need to know what we're dealing with!

Hi OP

My DD sounds similar to yours, diagnosed age 4 with right side hemi. She’s now 9.

It’s very mild physically to the point that people are surprised if I mention it. She never had any AFO or other physical aid, just sturdy shoes/boots. As I recall, it wasn’t recommended since she was walking pretty well without.

She is very resistant to doing physio exercises at home 🤦‍♀️. We have always encouraged lots of physical activity though, walking, swimming (swimming is amazing for CP), ballet, etc.

She doesn’t have a leg length difference but does have a shoe size difference and her right foot turns in which can cause hip ache sometimes.

The main issues for her are not so much physical but as a pp mentioned - emotional dysregulation (aka can’t control her temper/tears/reactions) and fatigue. Sleep has also been an issue especially age 0-5 but less so these days.

If you would like to chat more please do PM.

@AnnabelleQ
It's fantastic that DD can do ballet
It means that her balance and coordination aren't impaired too much, which is a very positive sign
You haven't said how old DD is but I imagine her Paediatrician will just watch and wait, and she may not require active treatment such as a splint

@KevinandRainbowlina you sound like a great mum - must be a lot to process. I can see DD’s walk is a bit different now when I really look but it’s confusing because she’s managing fine.

@minipie I wonder if it’s the leg length that’s causing the concern for my DD then?

Perhaps I should push for watch and wait for a while, but then what if it gets worse and could have been corrected more, plus I was thinking AFO’s now would be better than as a teenager given the choice (I’m not sure it even works like that though - would it be AFOs forever?)

@uncomfortablydumb53 I was surprised they talked about splints already but physio referred me to that department straight away and said it’s “very likely” in her opinion. It’s a basic ballet kids class, but it just shows that people aren’t even noticing it. Feel really confused about how much treatment she should have!

Oh and sorry, she’s 6 soon. Wonder how much worse it can get if just left despite advice to intervene, if they do recommend things more intense than physio?

Yes I guess it may be due to the leg length that the AFOs are being suggested. Does she toe walk on that side or does she put her heel down? Have they given you stretches to do on the shorter leg? We had some daily stretches involving flexing the foot back towards the leg and DD definitely got more flexible there over time and she can now do “heel toe” walking - when reminded to!

I am no expert but I am pretty sure that in your DD’s case the AFOs (if recommended) would be a short term thing to help stretch and lengthen the muscles on that side, certainly not for years and years.

At age 5 children are very accepting of differences IME so please don’t worry about that too much. It’s more about whether the AFOs would stop her moving around as much as she does now - it’s a balance between the pros and cons.

Good luck, it sounds like your DD is doing really well.

Thanks @minipie, I’m trying not to worry but you’ve hit the nail there about the pros and cons, makes it such a difficult decision and I find it hard to trust the doctors because every case is so unique by the sounds of it and no crystal ball?!

So interesting about the stretching helping. So DD does toe walk on that side especially when running, but she can put the heel down. I keep saying “heel down!” since I became aware of it at her appointment, I’m like a broken record! I’ll make it a priority to set aside stretching time. I get worried I’m not doing it properly or not doing enough as the physio only gave us one simple stretch the other day - maybe that’s all it needs and repeat that lots?

For us it was just one simple stretch daily, flexing the foot back towards her body (with leg straight then with it bent) plus a bit of calf massage, usually after bath or while watching tv when she was relaxed. We haven’t done it for ages tbh

Her other physio exercises have been more focused on improving core strength (she is also a bit hypermobile though so the core weakness may more to do with that than the CP).

Yes as PP said Concentrate on getting her to " point toes" and pull her foot up. This will stretch both her calf and Achilles' tendon and put her heel down
After a bath, rub her calf gently( you'll be able to feel if it's tight) and I repeat ballet is excellent exercise for this
Depending on her growth, you may find her tightness increases, and her heel rises more, but that in no way means an AFO is an urgent priority
I think perhaps they are drip feeding you possibilities at the moment and ultimately the physio doesn't have the authority to implement any changes This is for the paediatric and Orthotist( they measure and recommend which AFO/ casting could help her.
In my situation, they thought of options when I was falling over daily

Thanks both, I’m trying to do stretches with her - will that actually be able to reduce the leg length discrepancy though over time?! Or will that get worse whatever we do?

To be honest,she will likely always have a leg length discrepancy and a smaller foot, but as her CP appears very mild it shouldn't be an issue and decline
Disclosure I'm 56 and my discrepancy is almost 4cm as I'm am " further along the spectrum " than your DD I'm still very mobile active.

@uncomfortablydumb53 a friend said the other day, if it’s 1.5cm at a younger age, surely it will stay that as a percentage of leg length rather than that amount, so could end up a lot more when her leg is adult length? It’s something I’ve been thinking about a lot - what do you think?

Thanks so much for speaking to me about it. I honestly wish it was me going through it as I think I would worry less!

My ds eas originally diagnosed with CP in all forelimbs (mild) but he actually has hereditary spastic paraplegia.

I find researching myself very helpful. Looking at others experiences and then using those to ask professionals specific and targeted questions.

AFos are often used at first as a whole day thing but once you get the desired effect use can be shortened. However some people will always use them to benefit better from Botox or serial casting or tendon release surgery.

I'd also be asking about SDR surgery and if this is something your dd would meet the criteria for.

I think allowing her to join sport is great and certainly something you should encourage as it's often natural physio! My son is a member of CP sport and they are worth looking up. They also have a FB page.

Despite my ds having very stiff legs and arm contractures he is a swimmer. He trains 8 times a week!

Tomorrow he is having an assessment by British swimming to see if he qualifies for a para swimming sport class.

He's always just got on and done stuff and worked out his own adjustments because I've always told him it may make things difficult and may prevent you being able to do some stuff independently - but it should stop you finding your own path and abilities in life and you should never be afraid to ask for help.

Shouldn't** stop him finding his own path

It's very hard to predict as things will change as she grows, depending on factors such as length of long bones ( tibia and Femur) so although there will be a difference, it doesn't mean it will worsen.
I can well imagine her diagnosis is a shock, but please be reassured that if nobody in her close family has noticed until age 6, it is very unlikely to cause her anything other than a minor inconvenience.
Happy to help with anything at all, even if it seems a strange question to ask!

@itsgettingwierd you have such a good attitude to this. It’s inspiring, honestly. How did the assessment go?

@uncomfortablydumb53 thanks so much for your experience as well. I’m just so surprised she might need AFOs - we just went trick or treating for well over an hour and she walked the whole time, didn’t fall over once, so it’s almost hard to believe it could go from that to causing issues later in life if she doesn’t wear AFOs daily?!