GOSH physio exercise programme - hints/tips

Please post here any query that relates to Great Ormond Street Hospital/or your child's/adolescents hospital appointments generally. Within this section is helpful info regarding tips & hints for hospital visits -stays.

Re: GOSH physio exercise programme - hints/tips

Postby christianne » Thu Feb 19, 2009 10:27 am

There seem to be differnt answers to the discharge question. Last visit which was Ewan's follow up after the 2 weeker, they wanted to discharge him but I asked for them not to, and they agreed to see him again in a year(which will be this April )He has deteriorated so much that i hope they don't try to discharge him again when we see them, i will do my best to keep him on their books. So I guess if there is good reason to see them again they won't discharge. Maybe it partly depends on who you see.
Christianne
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.
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Re: GOSH physio exercise programme - hints/tips

Postby aheaps » Thu Feb 19, 2009 11:22 am

Thanks guys.

I guess I will have to wait and see what happens when we see Sue in June. If they try and discharge him I will ask if they keep him on their books, even if they see him once a year.

Claire

:bye:
aheaps
 

Tips to keep doing gosh physio home exercises

Postby Alison C » Thu Oct 07, 2010 4:16 pm

Hello

thought we could share ideas how to keep our children doing the exercises with weights after the fab fortnight rehab at gosh.

- children make their own weekly/monthly timetable and tick off when they have done them ie give them the feeling of control (useful for ten yrs old plus). Have thought of making a scrapbook with this.

- do not have tv on until the exercises are over

- do exercises with own weights at a gym -seems "normal" in this setting

- instant rewards ie don't wait a month to get a treat

- has anyone tried music?

- foam exercise mat instead of hard yoga ones

- not to do them just before bedtime as this has prolonged bedtime hour, and not to do them on the bed

Any more ideas please?

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Re: Tips to keep doing gosh physio home exercises

Postby Blaadyblah » Fri Oct 08, 2010 12:00 am

Wow Alsion, I could probably do with taking up some of those tips myself :oops:
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Re: Tips to keep doing gosh physio home exercises

Postby Alison C » Fri Oct 08, 2010 9:10 am

Me, too! :D

For me, I confess I add chocolate to the list!

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Re: Tips to keep doing gosh physio home exercises

Postby Jill » Fri Oct 08, 2010 9:21 am

I also add simple things like toothbrushing to the physio list :oops:
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Re: Tips to keep doing gosh physio home exercises

Postby Alison C » Fri Oct 08, 2010 6:45 pm

Site Administrators - help! I have repeated a topic heading! Sorry! Can you merge this one with the other one please?

Alison

all done Alison
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Re: GOSH physio exercise programme - hints/tips

Postby aheaps » Sat Feb 26, 2011 3:56 pm

Hi everyone,

I seriously need some help with our son Ben (he is now 7 years old). I have posted before about having problems trying to get him to do his physio exercises and things are much worse :(

Since the last time I posted Ben has also been diagnosed with Sensory Processing Dissorder and is on the referral for an autistic assessment (they are not sure whether all of his behaviours and problems are due to Sensory processing or possibly autism). He is currently seeing a specialist OT for sensory and a clinical pyschologist for ASD/behaviour problems.

We have major problems with his behaviours, anxiety and temper tantrums. We have tried all the 'normal' ways of dealing with behaviour problems but nothing has been successful. We are still waiting for his sensory diet from the OT, which hopefully we will be getting in the next couple of weeks.

Anyway we were back at GOSH a couple of weeks ago (been going since he was 5) and his muscles are not great and that is why he is getting loads more pain. We have really struggled with his physio exercises since he was last there about a year ago. So GOSH have given him 2 new exercises as well as the 4 he was already supposed to be doing. The 2 new ones including weights again as the weights were stopped last time we were there. The problem is Ben is refusing to do them as he complains that they really hurt. We have tried everything from behaviour/reward charts to bribes to discipline - nothing works! Even when we can get him to do them he does them wrong as he doesn't want to do them.

Ben has total meltdowns, cries, shouts, throws things and becomes abusive etc. (Ben has these behaviours most of the time due to his Sensory problems etc.) These meltdowns also last for ages, the one today was for about an hour and we still didn't manage to get him to do them :wall:

I know that he has to do the exercises as they are his best chance with regards to his EDS but, with all of his other problems it is proving almost impossible - PLEASE HELP!!

I would be grateful for any advice.

Many thanks

Claire

:bye:
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Re: GOSH physio exercise programme - hints/tips

Postby Jill » Mon Feb 28, 2011 1:10 pm

Hi Claire,

What if doing these exercises really hurts? Even a grown-up would stop doing them.
Can you contact GOSH physios to check if your son doing them correctly without damaging anything? May be he needs more simple versions or lighter load to do them the right way
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Re: GOSH physio exercise programme - hints/tips

Postby aheaps » Tue Mar 01, 2011 9:05 am

Hi,

Thanks for your reply.

We believe that Ben is doing them correctly as we are doing them exactly the way we were shown. The problem is with him having Sensory Processing Dissorder there is a good chance that they are hurting him more than normal because he has a problem with his tactile sense which makes him feel things more than normal.

We did explain the problems with Ben, including the problems we have getting him to do the physio when we were down GOSh, but they wanted Ben to get his muscles strong asap and just said that he had to do them!

We have decided that we are doing to speak to his OT and pyschologist when we next see them and see if they have any suggestions, if not we are going to speak to GOSH.

Thanks again for your help.

Claire

:bye:
aheaps
 

Re: GOSH physio exercise programme - hints/tips

Postby Jill » Tue Mar 01, 2011 2:32 pm

Good luck! May be doing exercises in water will cause less pain?
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Re: GOSH physio exercise programme - hints/tips

Postby barkingmad » Wed Mar 02, 2011 6:42 pm

Hi Claire,

Its nice to see you around!

I am sorry that Ben is having so many problems doing the exercises, it is difficult enough to explain to any child why they have to do the exercises which do hurt in the beginning and must be even harder if the child has sensory processing difficulties. If its any help Andrew has ASD and ADHD as well as EDS. Natasha has some learning difficulties as well as she is still under GOSH.

When Andrew was doing the exercises we found that bribery didnt work in the end, we did try letting him play on a favourite computer/xbox game which we kept purely for a reward. That worked for about 6 months and then we had to find a new method.

I found that if I did them with the kids we could turn it into a game..which he or she won! In particular with Andrew I had a set of weights too and he liked to prove he could do the exercises better than me and that he was always the one ready to move up in his weights. I know that this isnt brilliant but if you and Andy could make a competition of it so the whole family are doing it and then you all have a reward maybe this would help? I know it can make it harder to do if you do it this way because getting everyone together at the best of times can be difficult...For us it did work and we had lots of laughs about it. He also didnt feel so different as we all had to do it.

I still have a competition with my daughter at times and they both genuinely beat me (as I cant do the exercises very easily at all and they have my respect for doing them all so well).

Maybe you could also say if you both do the exercises for the 5 days a week then there will be a treat each weekend or during the week if you do them Saturdays and Sundays etc. We used swimming, comic he wanted, cinema, bike rides, park, DVD', McDonalds, friends sleeping over etc. He was allowed to pick a treat for the week ahead and then he would aim to get it by doing his exercises alongside me doing mine. You could try it that way.

The exercises are necessary to build up his strength and they will help in the long run with pain and fatigue but I really do know how hard it is to do especially when your child as additional problems.

Has Ben done any of the pain management groups at GOSH?

TC Donna
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Re: GOSH physio exercise programme - hints/tips

Postby aheaps » Thu Mar 03, 2011 7:37 pm

Hi,

Hi Donna nice to speak to you again!

Ben hasn't been to any pain management at GOSH.

The problem is that what works for Ben one day won't work the next. I think it depends on what else is happening with him, how tired he is or how stressed he is etc. This week he is trying to do the exercises, which is good. So we will see how he goes. We have tried doing them with him as well but with no success!

I must admit I feel sorry for him really. He has so much to deal with at such a young age and I completely understand why he hates the exercises. Saying that I know that if he doesn't do them he will more than likely get worse with his pain and walking etc.

Well I will see how he goes and speak to the pyschologist and OT when we next have appointments with them to see if they have any suggestions.

Thanks for your help.

Claire

:bye:
aheaps
 

Re: GOSH physio exercise programme - hints/tips

Postby Traceydeborah » Sat Mar 05, 2011 8:45 pm

Hi Claire,

My son is 9 years old and he has EDS but he also has sever Sensory Processing Disorder. He goes to GOSH and does rehab once a year cause he has such sever joint problems.

Unfortunately, what works for EDS clashes with his SPD and only a parent with both disorders can truely understand your dilema. I have a weighted blanket and when he is doing his leg exercises the top half of his body is covered completely, especially his head and likewise, the bottom half is weighted whilst the top half is exercised. Also, get him to jump on a trampoline before starting, it jolts their sensory side into action ready to exercise. Sometime we do his exercises in a tent, he likes to be surrounded despite being very tactile sensative. When I can see that he is starting to loose it I get behind him and give him big bear hugs which usually bring him down. Before exercising I always give hima crunchy snack such as a biscuit and make him drink a thick yogurt drink through a thin straw. This also jolts there sensory side into focus and he tends to exercise better. I also play very calm classical music which he really responds to. He still crys through it all but it helps to limit the meltdowns.

Hope this helps. Email me if you want more info.

Love Tracey x x x
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Re: GOSH physio exercise programme - hints/tips

Postby aheaps » Mon Mar 07, 2011 3:09 pm

Hi Tracey,

Thanks for your reply. It's really good to hear from someone else who has the same sort of problems as it can be difficult to get people to understand especially with the SPD.

Unfortunately we are still waiting for his 'sensory diet' from his OT, but will hopefully get that soon. Ben loves to be on the move constantly so maybe the trampoline may work for him, I know he enjoyed that in his sessions with the OT. I would have to buy one of the mini indoor ones as he won't go on the ones outside (he has extreme fears over bees, wasps, flies etc, anything that buzzes basically and will refuse to go outside).

Ben has a lot of behaviour problems and 'odd' behaviours which they are not sure whether is autistic spectrum (he has a lot of autistic traits) or whether they are simply down to the sensory problems as I have been told by the pyschologist that autistic children's behaviours are almost always caused by sensory problems and not because of autism.

At the moment he is managing to do the exercises, but he tends to do this. He will do them for a week or so then will refuse to do them. I am just hoping that once we get his sensory diet in place it might help things a little bit. We are back with his pyschologist tomorrow and will ask her advice on it as well.

Thanks for all the advice.

Claire

:bye:
aheaps
 

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