A quick survey on physio stretching exercises for cp children

[twoisplenty]

I'm confused...my 8yo ds with diplegic cp has needed stretching exercises every day for years. But because it's so routine I think I've lost my way with what's necessary.

So: Do you do exercises once, twice a day or more?

How long does it take?
What time of day do you do them?

I only do them once, in ds bed, just before his story, and it takes only 5 minutes, I do his legs (arms are ok). It doesn't sound like enough though. I do make sure he is in good position when playing etc, and make him sit cross legged for a few minutes each day.

Feeling very guilty that I'm not doing enough.

I daren't ask the physio because it is such a basic requirement to do stretches, I can't ask her after all these years! Any help or finger wagging to tell me to do more, very welcome!!

[lourobert]

Hi, my son doesnt have CP but at 18 months cannot sit or weight bare particularly well. I do an exercise routine with him everyday (or at least i aim to do it everyday!) his routine is 25 mins long but the streches part of it is 6 mins long.

I often that the guilt of not doing enough but i try to relax more now.

Ask your physio, I would. Im sure they woulnt think any less of you for asking....!

[twoisplenty]

Thanks lourobert. But my physio is a strong character, and my legs turn to jelly at an appointment! I feel that I would really struggle to ask her after 8 years!!! But in the end, for peace of mind, I might just have to.

All sparked off by appt today where the ortho surgeon said his hip x-ray showed that his hips are getting slightly worse...immediate feelings of guilt. Is it my fault?? I always think like this. Not healthy I know.

[chatee]

please ask your physio...just ask her to update yuo on what she does with your child when she sees him.

all exercises will differ as to the needs of the child but atm we are doing stretches at least 1 x day, and lsa does the same at school.
we were told it's best to do them on the floor (not the bed)as it gives more support.
it takes about 10-15 mins each time but dd does have some phsyio moves that she can try herself

i know what yuo mean about feeling guilty though-if dd is still the same as now in 6 months then she will most probably be needing an op, time in cast and intensive physio.....

[chatee]

oops x posted - started typing and got side tracked

[mamma2kids]

Hi Two

I am a physio. I don't work with kids, but with adults with strokes and headinjuries etc. I also have a DD who has clubfoot and needed stretchs and orthotics (which came off all the time and had to be constantly put back on). I really struggled to keep up with the orthotics regieme and always felt guilty about it but thankfully she is doing well.
You sound like you're getting the right balance between being your son's Mum and his physio. The positioning during playing etc is the priority as this putting his joints and muscles in the best position for longer than just stretching. Also it's something he can possibly do for himself. The night time stretchs are probably worth while (especially if he's had a bath and is warm) but generally stretchs won't make a massive difference either way. The changes to his hips will be to do with his growth and development, not because you haven't been doing stretchs properly.
Don't let those bossy physios intimidate you. You're his Mum!

[Fubsy]

Let me through, Im a paediatric physio!

Seriously, looks like mamma2kids beat me to it with the sensible advice. I might be letting out trade secrets here, but tbh 5 mins of stretching wont stop contractures from developing, but then neither would 5 hours.

The research says that a muscle needs to be put under stretch continuously for 6-8 out of every 24 hours to maintain muscle length or possibly increase it. So the only thing that will do that is serial casting or AFOs/splints etc.

But I would alweays recommend a stretching regime, for the following reasons:

It gets your child used to being handled that way in for when professionals do it.
It gets you used to how your child's muscle tone/range of movement feels, so you can alert your physio if you think they have tightened up.
When you go to orthopaedic clinic and the surgeon with nil bedside manner asks you what stretches you sre doing, you can show him that neither you nor your physio are idiots

Older children can take responsibility for their own stretches sometimes, as lonng as they can understand how to do the techniques.

There is no point in feeling guilty about trying and sometimes failing to fit it all in. I know as a NHS physio I cant do all the treatment for any of the kids I see, it has to be the family's responsibity as well. But there are ways to make it more fun- horse riding can help stretch the hips for example, positioning in standing frames and the like also reduce the risk of contractures. Problems like dislocating hips can occur even when stretches are done religiously, so there is no point in beating yourself up over it.

Best thing is to always ask your physio why they are doing things - we have a tendency to assume that if no questions are asked, then it has all sunk in - I know with hindight that this is often not the case!

But as a mother I know only too well how difficult it can be even to fit a reading book into a normal day, so if you have physio, Ot, SALT, Portage etc, no one is going to blame you if you ask what needs to be done as a priority.

By the way, twoisplenty, sorry to hear you have a scary physio... hope it isnt me!

[bobalinga]

Hey Fubsy, C's physio comes for an hour every 3 weeks and C has full body dystonic CP. Doesn't seem enough to me. Of course she's got her AFO's and wrist splints and we strap her into the screaming device caled a stander and we stretch her and rotate her etc.
C is also more relaxed after the physio has done her thing but they just wont increase it due to 'budget retrictions'. Do you think kids are being damaged by this?
And don't get me started on SALT which happens once every 8 weeks despite C being non-verbal and 3 and in desperate need!

[chatee]

i have just(literally dropped through the letter box now)received a set of physio guidelines with pictures on them, they are really fantastic and will help me do dd's exercises with confidence,

if you want i can photocopy them and post them to you?(and then you can talk to ds's physio and get her to show you which ones she wants you to do-there are 13 different stretches)

[Cappuccino]

twoisplenty does your ds get physio at school?

tbh we scaled down our home physio because dd1 has so much input at school and just needs to be a kid when she gets home

dh does about 20 mins with her in the morning, and I take her swimming (she has some physio exercises for then), on her trike (special trike to encourage independent leg movement) and we incorporate exercises into physical play sometimes when dh is home

we do threading and craft stuff in order to encourage fine motor skills

but she needs time to go to the park, eat ice-cream, run around in her walking frame, etc etc, do her reading/ homework, talk to her, learn stuff, have fun, etc and there's not much time after school if you spend all your time pulling them about !

I think sometimes you can forget how much you do because everything we do has some sn implication and after 8 years you have stopped even thinking about it - I certainly notice that I am not checking dd2s position and how different it is looking after an NT child

[magsi]

Hi twoisplenty, hows it going?

If I were you I would say to your physio:-

"could you just demonstrate to me the proper stretches again and that I am doing them right, only I do them every day and I want to make sure I am not slipping".

Just take a deep breath if she is intimidating and remember that you are his mum and need to know what you are doing with him is correct. He sounds a very lucky boy to have such a caring mother

[chatee]

Cappuccino - please can you CAT me re: the pen pals, would be a great idea for our two dd's i think?

sorry for the hijack!

[Fubsy]

Hi Bobalinga - it's obviously not for me to say whether another physio should be treating a child more frequently, but I suspect that most of us would like to see kids with cp more frequently than we often can do.

The NHS is getting worse and worse with budget restrictions, and childrens services seem to be getting the thin edge of the wedge because we're not seen as glamorous and life saving. (The cynic in me says that the budgets are allocated by old codgers who are more worried about their impending heart attacks and liver cancers than what might happen to their grandchildren!)

What some services do to spread things out more fairly is do an intensive block of treatment, then leave you with a programme to do at home or school until the next block is due. That works for some people, others prefer to be seen regularly but less frequently.

If you dont feel your treatment has the same effect as the therapists, dont be afraid to ask her to show you again, as it may be that she is just handling your child slightly differently. having said that, some parents do it better than the therapists as they know their child bettr and the child feels more relaxed with them!

[mamma2kids]

Very well put Fubsy. Totally agree.

[twoisplenty]

Sorry everyone, not been doing MN for a day or two.

A heartfelt THANK YOU for your posts - I feel soooo much better - really. I never realised that doing stretches for 5 minutes wasn't absolutely essential every single day - you know, I felt guilty when missing them if ds had had a late night out to a party or something.

It's difficult isn't it, to get the balance right, and stop the ridiculous guilt trip - I know it's pointless feeling guilty, but I felt that the last 8 years were all down to me in whether he progressed...even though he goes to a sn conductive ed school where they do physio as part of their whole day.

Cappuccino - yes I agree too that my sn children should be allowed to be a child, and play when at home from school, without the additional pressure of doing the right thing all the time. And its lovely to watch them just being themselves.

Fubsy - lovely post and such a relief to hear! My ds physio is always demanding more, more more and it's overwhelming. She does admit though when I challenge her regime, that sometimes she forgets that we are dealing with children in RL situations with siblings and other stuff at home.

Chatee - thanks for your offer for posting the info. I'd love to see it, but not sure how to give you my home address privately. Could you tell me how to do it please?!

I risk sounding like I am writing a speech holding a golden globe or something... but thanks again for the responses everyone. It's made my day!

[twoisplenty]

Hi magsi!! Things are going quite well atm thank you - decided that ds needs more support in school for learning makaton, so headteacher is happy to try to get LEA to give time to help ds learn more. (Remember I mentioned about school for deaf to learn signing?) Well, school for deaf said makaton was the best to use for ds learning problems so that solves moving schools anyway! Have you solved your problems re: ms or sn school?

[magsi]

Hi twoisplenty

Gosh where do I start, I havn't been on here for a while. Well, a few weeks ago we had an annual review meeting for ds1. In the meeting it was decided that ds1's current special school (for severe learning difficulties) would not be suitable longterm for ds1 because he would eventually get 'bored'. He is actually doing well and not falling behind in his 2 day a week placement as ms school and he really loves it now (I can tell this because of the smiles when I put on his ms uniform as apposed to the moans when I put on his sn uniform ). So it was agreed by everyone that although his sn school is absolutely great and has been a really good start for him, it was not the right option longterm. It was then suggested that as he had not reached a level at ms where he couldn't go any further, we should try him at ms from September full-time . Of course the initial thought filled us with horror. We hadn't really thought of this as an option and we were very doubtful of leaving the 'system' altogether. But after thinking about it, it would not be fair to not give ds1 a proper go at ms and he isnt really getting this with only 2 days a week. We have been assured that he will always remain on the list to be considered for a special school placement in the future (I asked her to write that bit in blood ). I cannot imagine him at mainstream secondary school, but I suppose it will be up to ds1 when the time comes.

So there you have it, from September he will still be having his 1:1 support all day and will be at ms full time. I have always been wary of being pushed in this direction as I have always wondered if it was 'the cheaper option', but I can now see that we need to give ds1 a fair go at this and as he is not particularly behind in any way compared to his classmates, it would be unfair of us to not give him this chance.

We are trying to ignore the possibility of ugly monster called 'bullying' which is raising his ugly head, looming in the not too distant future ready to pounce at any moment....