cerebral palsy - 'toe walking' question

[hazeyjane]

Ds is 1 with gdd, clear genetics results, awaiting an mri scan.

Ds is nowhere near walking, he has just started to sit, but he will weight bear.

If I stand him up he will bear weight on his legs for a minute or 2 (holding him up), usually his feet look slightly 'clenched', and roll in, recently he kind of pushes up on his toes as his leg tries to flex.

If your dc 'toe walks' did they put weight just on their toes from the beginning, or did it develop?

Sorry if that all sounds a bit garbled!

an old friend of mines son used to toe walk and still did this into being toddler he had to have a few ops before he could walk properly ie fill heal to toe steps putting full weight on iykwim , and he had a further op later when he was about 6/7 but i dont know if that is 'normal' for a dc with cp or not or just one persons experience but his feet were as you discribe clenched and roll in. hopefully it wont take you too long to get this aspect of the problem sorted

DD is 2.3 and has mild CP diplegia. I couldn't honestly remember, so I had a look on my old photos (!) and I've found DD standing beautifully flat-footed holding onto DH's toes (don't ask) about a year ago. She began toe-walking progressively as her muscles tightened. Now that we do her stretches as often as we can during the day, she walks flat-footed again (usually). She's like a drunken l ittle lady though as she falls over every few steps! I'm assuming she'll become more stable sometime...

Like Galenas DD, little DGS (also CP - but more fluctuating tone with no rigidity as such) also started out very flat footed, but now at age 2.10 he does a weird toe curling under, feet turning inwards and also up onto tiptoes We don't really understand why these more CP like movements (arching back when excited) are more obvious now than when he was younger. We will ask at Brainwave in a couple of weeks time.

ds2 was originaly pretty flat footed but rolled in when standing & clenched toes. It was only as he started walking that he went up on his toes.
He had piedro boots from very young, before he was walking but once he started weightbearing to provide some support.
He then had heal retaining straps added to piedros & once he was up & about progressed to splints.
DS2 is 8 now and walks flat footed, we have been very fortunate that his CP has proved to be v mild, he also has ASD & learning difficulties.

Do you have a physio you can ask? If not maybe you can get a referal if only to rule out any concerns.

Thankyou everyone.

That is very interesting. Ds hasn't been diagnosed with cp, but it was on a list of things that were being looked at.

Ds was doing it some more today, as far as I can see it looks as though he is trying to move his leg, but can only do it by pulling his toe right up. The whole leg then buckles and flails around.

He does see a physio, in fact I realised his appointment is next week, so I will ask her about it then.

His feet are often clenched very tightly, but the physio thought that it was most likely through the effort it takes him to sit

Sneezecakesmum, your post reminded me that ds has also started doing that arched back thing, he is normally quite still, so it takes us by surprise when he suddenly throws himself back. I'll ask physio about that too.

DD's toes were always clenched. Still are often. She has insoles now which are designed to make her relax them.

I've sat down to answer this three times and each time have got not further than the first sentence - hope I get further this time!

DS has spastic diplegia CP - he's 6.5. We have a lovely photo of him at about 18 months holding on to something standing with flat feet. Now he is so high on his toes that he is starting to get contractures in his ankles. We have had day splints, day splints with neurofeedback insoles, night splints, oodles of physio, boots, botox etc etc. It is just the way CP progresses in him. I know CP is 'non - progressive' but I often think that is the wrong impression to give. The brain injury doesn't get worse but the way it affects the body usually does. DS is now walking but is unlikely to still be walking as a young adult, everything is tightening up massively and we have yet to get to the start of the rapid growth from approx 8 - 16. We are looking at a number of different ops to release everything but in almost all cases they are temporary (sometimes for a few years but still temporary over a life span).

The back arching thing is a very common CP thing, if they get excited (or cross!) the automatic response is to go into extension - we have spent years with physio, appropriate seating and his increasing maturity and understanding training DS out of this - with some success - he will still do it at times but it's now much less.

Sorry I realise this has turned into a bit of a splurge about DS - I think it's just that over the summer holidays I am being forced to notice things I've managed to ignore during term time!

Thankyou for your post hairymaclary (one of my favourite books btw!).

It is very helpful, because we are just watching and waiting with ds, but sometimes he does things, and I think, 'hmmm is that odd, I can't remember the dds doing that', and I sometimes I feel as though I am mentioning things to the physio that are just a 'normal' developmental thing.

There have been several things that lead us to wonder about cerebral palsy, but I am wary of starting to think down that route, without a definite diagnosis, which of course could be a long way off.

I don't think it would do any harm to be thinking along the lines of CP as anything you would do to 'help' would be physio, standing / reaching /specific muscle strengthening / stretching (although there is a considerable difference of opinion as to whether this makes any difference at all!)
If it's not CP it's not going to do any harm as it's all only exercise!

Good luck though!

Nothing much of use to add, but just wanted to extend sympathy to Hairy. Quite right of course - the cp doesn't change, but the body's ability to deal with it does. Height, weight, etc all have different impacts. Unfortunately, you are right that the rapid growth years will be scary.
Wait until your DS turns 16 and decides that he'll have no more interference...as mine has done. He is off to college in Sept, has refused his hip surgery and the only therapy he intends to take up is hydro.

Oh God, SpringLamb really? I dread that time - we are hoping to get a major op in in the next year which should reduce the need for orthopaedic surgery in the future and I have an eye on the fact that even now they take his opinion into consideration and it won't be long before he can overrule us! I'm already talking to him about exercising as a way of life etc and am hoping that I can instill the need for constant lifelong physio albeit dressed up as exercise when he's older and not so biddable!

It was in fact at the appt to discuss this surgery that the consultant confirmed what we had suspected about the probable deterioration in his walking (the physios had hinted at it). It's a bit disheartening as he's been doing so so well and I almost hoped we had 'escaped the worst' by getting him walking but it looks like it might not be.

We passed on your bike by the way - just this year - it did DS really well and he's now outgrown it so it's gone to another little boy who was very pleased to receive it!

it definatly changes as they get older, ds2 is 9 and although he has got off very lightly in terms of stiffness but he is less able to do any distance as his poor tone means he tires so much and the differences between him and his peers is more obvious, his learning difficulties & asd also have far more impact now than we ever realised.

He also objects to physio now, we have done, horseriding, hydro, gymnastics, trampolining, sn football. As soon as he refuses we swap for a new activity but we are running out of options.

Hazey - some kids do just start walking/weight bearing on tiptoes and progress to flat feet though - my friends dd looked really odd walking initially at 15 months but was flat footed within 6 months.

My dd doesn't tiptoe but physio is keeping an eye on things (she's currently very flat footed). She told me any child can start to tiptoe or get tight with growth. We'll just have to wait and see how her body responds to her difficulties over time - like anonandlikeit's ds, my dd has low tone primarily with some slight stiffness.

Hopefully DSs MRI will be clear, but I would certainly have a chat with the physio with your observations to see what they think. They are usually very good.

Hairy - very interested in what you say about the arching when excited. This is driving us bonkers with DGS. His initial reaction to reaching for toys is this extension pattern, but then he can relax and come forward, but it is sometimes like dealing with a mini bucking bronco! V interesting regarding the seating, we have a jenx and a rifton corner seat, but he constantly fights against them and is a little sweaty mess very quickly - the chairs seem to make the pattern worse, but common sense says we should persevere and 'break' the bad pattern of movement. (just looks so stressed out in them )

Just thought I'd revive this, to let you all know that we saw the physio yesterday, she has fitted ds for Piedro boots and has issued us a standing support for him. She feels it would help his development and muscle strength if he was able to stand and play, but was concerned that when he stands his feet are drawing up and his ankles aren't strong enough.