GOSH physio exercise programme - hints/tips

[Alison C]

Another fabulous idea Alison - Sticky - Site Admin

Just thought we could post here how to keep going at home with the fab GOSH physio programme. What do you think?

eg we use a sticker each time my son does his exercises and then 30 = a treat. We are thinking of also giving a small treat at the end of each week as waiting for 30 stickers takes some patience!

We find music helps. TV has proven to be a distraction and the exercises take 90 mins with lots of rests instead of the 30 mins.

Which time of day is best for you? After tea helps us as before tea it is a bit tricky to find time to help him altho he is at his best then!

Cheerio
Alison

[kezzykat]

Hi,

Fortunately, my son hasn't had manyh problems as yet.

However, I have two children and I have found that reward charts like you have devised are a very good idea for anything which you need your child to do. I used them breifly with toilet training and at the moment use them for my son for controlling his asthma.

We have a chart which we can record when he takes his peak flow, takes his inhalers etc, and it has proven very successful. I do think that you do need "mini" incentive rewards inbetween whcih mean they have to demonstrate whatever the chart is for, fewer times than when they get the bigger reward.

Its all about keeping their attention and interest, and of course lots of praise. I have found that I also praise if he hyasn't done the whole shebang..For instance if he only does his peak flow once or twice rather than 3 times..I say how great he did those attempts, and ask him how he feels he is doing etc.

If he ever doesn't do it for whatever reason ( very rare) I talk about past times and how big he is taking responsibility for his asthma and how fab he is doing. This is enough to encourage him to do whatever he doesn;t feel like that day.

Of course HMS/EDS is different in that we have pain which often dictates and directs our feelings about doing therapy /exercises. If something hurts we are reluctant ( psychologically) to do it because we fear aggravation and bringing on pain. I guess reward charts need to reflect those days when intention is there, but for whatever reason he/she is unable to fulfill/do the task.

My son does do the little tricks that many with EDS/HMS do..you know the party tricks etc? and I would perhaps customise the chart to discourage this. Not exactly sure how, as it is really about rewarding positive not pointing out negative...Where it wouldn't be appropriate in my opinion is in this sort of situation: My son does have issues with dislocating/subluxing his shouulder when he is otherwise distracted. Drawing attention to this, in my mind isn't helpful as he is pretty inaware that he is doing it and may do it more often if brought to fore of his thoughts.

Anyway, just wanted to give you some feedback. Sounds like you are really positively approaching his PT/exercises. Not sure how old he is, but it sounds like a great way to encourage and develop his own sense of responsibility for his HMS/EDS.

Take care,

KK

[bobbles]

We've just started with some core stability exercises that Millie has to do twice a day.

It's quite a challenge to fit them in some days - mornings are okay, I've just started to get her up half an hour earlier than she used to, to do them, but the evenings are a bit more problematic -

- Millie is so tired when she finishes school that 80-90% of the time she falls asleep in the car on the way home, and I have to carry her indoors (not easy - she's getting heavy now)....she usually wakes up briefly and the falls straight back to sleep for a good hour or more....so between trying to arrange our evening meal for when hubby gets in so that we eat together, getting her to do her homework, trying to let her have half an hour to do what she wants to do, and compensating for the half an hour earlier she's getting up in the mornings - physio has become part of the bedtime routine, and bedtime is getting pushed on later and later because of it....we need to make better arrangements really - but I'm not sure how???

We have a reward chart, but the novelty is wearing off a bit already. When she first started I said if she got 10 stickers (2 a day) I'd give her some money to buy a magazine or a small toy - just to encourage her to get started. And then from there on I've said she can have something every 14 stickers (so on a weekly basis)....but she has about 22 stickers at the moment and I keep offering her the money, or offering to buy her a surprise - she insists that she wants to choose it herself, but when it comes to going shopping to buy herself something, she can't be bothered.

I've also noticed that Millie chooses to mess around and not get on with it, when she's actually finding it hard going - she never tells me that as such, but me and hubby both agree that when she starts her messing around, it's when she's had enough and wants a break.

We have quite a few whingy, teary sessions - especially in the evenings. If she's not had her after school nap, she will sob her way through the whole routine sometimes. She asked me the other day why she has to do these exercises when nobody else in her class at school has to do them...I told her it was to help her "extra-bendy joints" to become more stable - but I did feel a little bit sorry for her.

She never kicks up a fuss about having to do them, she's good in that respect - she's told me on a couple of occasions that she doesn't want to do them but she knows she's got to, and then she just gets on with it.

The hardest part for me is when she's has her whingy, tearful monents - but we have to just keep plodding on, don't we!

Sharon xx

[TED]

Hi, we havent been to gosh yet I'm still waiting for an appointment. We have asked for a referral ,that was in April, I dont know how long this takes anyway its in process. Meantime I asked my physio to contact the gosh physio team for excersises for Chloe. So we have started these. The suggested time was 30 mins but my physio said at this stage that would be too much and that we will have to work up to that, as long as we do them 5 days a week. I totally agreed with this. So each morning Mon-Fri after the others are at school we do our physio together as I have physio to do too and to encourage us both we do them together. This seems to work quite well.

Sharon twice a day seems quite a lot to me, we have been doing physio with Chloe for four years and we have never been told to do them twice a day. Have you been to gosh, and they have told you to do this?

I realise physio is very important for people with hms but pacing is also very important too and it seems Millies day is very full.

By the way physio can be set up at school, when Chloe was able to manage part time schooling the school/physio had a lady in to do physio for the kids needing it. That was great as the physio showed the lady(cant remember her name) the excersises needing done and would review them now and again. But now I do them as she cant manage school but when she goes back she has an allocated physio time each day at school. This may be something you can enquire about and it will make it easier for your wee one rather than having to do them in the evening after school when she is too tired.

Take Care & God Bless

TED

[christianne]

Hi I thought I`d add an idea for making exercises a bit more fun, my son Ewan and I count in different languages when doing them, e.g. if you have 30 reps to do you can do 10 in English 10 in French and 10 in Welsh or whatever language you might be able to manage.(I know i`m on a winner here because I have 5 languages! lol but you only have to be able to count to 5 or 10.) He loves it and it makes it a little less tedious.
Christianne

[bobbles]

That's quite a good idea Christianne, might try that one - I think I can count to ten in 4 languages, so it's a start.

At the moment, my poor daughter suffers me making the counts into a song.....I sing all kinds of rubbish, but she's only 5 and seems to quite like it most of the time.

Sharon

[antimatter]

I'm sorry if I haven't read thoroughly enough to find out if you did this already, but I was wondering if you have tried doing the exercises alongside your children. Feel free to disregard my comments if the exercises can't reasonably be done in that way. The reason that this came to mind is that last night I was trying to learn some core stability exercises from the Brill book (not that I can force myself to do them on a regular basis ), and my little one was trying to emulate me (with most things that doesn't happen ). If I can discipline myself adequately, and figure out how to teach her the proper steps, I wonder if she may be able to avoid the problems that I ended up with.

Anyway, good luck...

...antimatter

[bobbles]

Hi Antimatter

I don't know about everyone else's, but most of my daughter's exercises are quite play-based, so they require me to interact with her whilst she's exercising rather than exercise alongside her - for example, we have some that involve throwing and bouncing a beachball, and another where her teddy has to crawl through the tunnel she makes when she lifts her bottom off the bed - in fact teddy is involved in quite a few of them

I agree with you though about getting our little ones into the habit of doing their exercises from a young age, so that hopefully they won't suffer as much as us.

Sharon xx

[Amanda]

Hi a mum off the Perthes board I am registered on said that she used to get her son to squeeze a racket ball during commercials. They made a game of it. How many times could he do it, etc. and that it was something he liked.

Great idea for my boy to strengthen his hand, am sure others will benefit too

Amanda

[aheaps]

Hi everyone,

My 5 year old son was at GOSH at the beginning of December last year and was diagnosed with EDS. He is back in June for a checkup. He was given exercises at home to do which he has been doing once a day, every day since then. He is currently on his first set of weights 0.5kg, he goes up to 1kg this Saturday. Anyway, what my question is did everyone find that their children improved with their condition after doing the exercises from GOSH? I know that it is early days with him and his exercises but at the moment even though his muscle strength must be improving because he can lift the weights which he couldn't do before, but I see no improvement. In fact his fatigue levels seem to be getting worse. It is just really upsetting to watch. He has been to see his friend from school today and is just so exhausted and acting like a monster because of it. So now we will probably have to limit how long he stays at his friends next time. Its hard to know how much to let him do.

I am probably just being really impatient but I was wondering what other people's experiences are?

Thanks.

Claire

[rebeccagraceson]

This is interesting. We get Sam's physio programme tomorrow at GOSH which will involve the weights I think, god knows how we will get him to do anything - he is a total rebel at the moment

So, I don't know at the mo. any of the answers about these....

Becky
xx

[dawn barlow]

Hi my son and daughter both done the 2 week stay at GOSH, October 2007. They were given exercises to carry on doing at home using weights, it was a struggle getting them to do them especially my son who was 14 at the time but we perseveered and got results. They only have to do the exercises 3 times a week now, at both check ups since Sue has been really pleased with them and said their muscles have strengthened a lot. They stil get a lot of aches and some areas such as ribs can't really be helped. I'm glad we were given these exercises as we really noticed a difference. Hope you all get on ok.

Dawn x

[christianne]

Hi. My son Ewan was at GOSH for the 2 weeker in Sept 07 and had already been doing exercises before that. He has kept them up since, and with varying results. There has not been a huge improvement and sometimes he has periods of deterioration,(often linked to growth spurts when his muscles and ligaments have to readjust to their new size) but I tend to wonder whether these deteriorations would be even worse if he wasn't doing the exercises. I think they have increased his stamina. It is a difficult thing to have to keep up these exercises and cajoling the kids to do them when there are no obvious results, and sometimes I do feel as if it may not all be worth it but then I remember that as yet it is the only real thing we have in our battle against HEDS/HMS and that the experts are convinced that it helps.
A point that might help some of you struggling with the exercises, is that Ewan does his in school every day in the mornings. He has a statement of Special needs for Physical needs, and therefore has a helper for things like writing and moving around, and the helper does the exercises with him daily(shown how to by the physiotherapist).This works well because he is too stiff to do them before school and too exhausted after school. Also kids tend to be more willing to do them for other people rather than for mum! It may be possible for some of your kids to do them in school when they are fresher.
Christianne

[aheaps]

Hi,

thanks guys for your posts. It is hard trying to get my son to do his exercises most of the time, but we have to do them as it it the only thing that might work to get him better. Maybe I am just expecting too much too soon to see an improvement in him.

We get Ben to do his exercises before school because he is too tired after school. We have spoken to the school about Ben's condition and they have been really good so far, really helpful. He has been placed on the Special Needs Register and a plan is being drawn up at the moment for him. His teacher mentioned something that might be on the plan is about doing his physio at school, which I must admit that as long as the person helping him know what to do then that would take a load off. We are really busy on a morning before school as his exercises can take upto 45 minutes because he finds them difficult and we usually have some homework to do as he was too tired the night before to complete it. I agree that he would probably do them better for someone else than for me or hubbie. Plus I wouldn't have to feel like a monster when I am 'forcing' him to do them when he really doesn't want to and gets upset.

I guess I will just have to wait and see how he gets on. He is back at GOSH in June to see Sue. Another question - if she thinks that his muscles have improved will he be discharged or does he get reviewals every so often or what? I believe that his muscles have to have improved but I think that he fatigue is getting worse, so will he keep getting seen at GOSH? Sorry to go on but I just don't want him getting discharged and then having to fight to get referred back if he deteriorated again.

Claire

[dawn barlow]

Hi my 2 have been seen roughly every 6 months for check ups since the 2 week stay. I was worried that they might get discharged and have to go through all the hard work of getting them referred again. I was assured that they wouldn't do that and would keep an eye on them. I think they keep then on at GOSH until they are 18.
Dawn x