HMS fatigue in children

[popsmum]

hey all, well my poppy has just been diagnosed too up at gosh, we are under them an have been since birth, shes two december, my son oliver had it but we didnt no, an the poor mite suffered, an had to use a wheelchair, he too used to lay about couldnt do much, an when he realy did go for it boy did he pa for it after! nights wer the worst!

poppy still cant walk at mo, she uses a frame recently provided by OT an phyiso, she also has periods of just laying about, pale, no energy, she has major bowel probs again these are caused by the EDS, but i wanted to post re teh wetting himself hun, poppy has the opposite probs, she holds for 16hrs at a time, olive ron the other hand wet an was still in nappies at amost when he passed, although he got clean 2 wks before his 2nd bday, but at 3 just wet continously! this is EDS\HMS related, basicly liekit makes teh bowel have dysmotility it does the same with teh bladder, it also has collagen in the muscles, and causes it to contract/not contract properly.

im realy interested in the dyspraxia?? how do we go about diagnosis? she has teh autonomic dysfunction, but poppys def different and does like certain materials, noise, smells, hairdryers etc, very strange child, but georgous! just wondered who we see for this?

but i wanted you to no that its normal for hms/eds child to not realy complain but just lay about an be grumpy!!

kim x

[Alison C]

Occupational therapists (paediatric ones - usually nhs at child development centres) assess and treat dyspraxia. Children with HMS can seem to be "dyspraxic" (I think you use the term dyspraxia if there is no known medical condition - this is different from dyspraxic!). I say that children with HMS can have sensory processing problems (also term disorder but I think this may again be used for someone without a medical condition). OTs (for short) can give ideas how to cope with the sensory things going on - called sensory integration therapy.

Sorry about all the terms but they may help you when you need to talk things over with your doctors etc
Alison

[aheaps]

Our 5 yr old son has EDS hypermobility and is currently undergoing physio to strengthen his legs. He plays football on Saturdays and is often very fatigued by the the end of the day. This causes him to be moody, easily upset and he often over-reacts to the smallest thing.
We recently signed him up for swimming lessons and he had his first one on Sunday. However, this morning he was absolutely knackered, crying and obviously extremely fatigued. It looks like we will have to stop either the football or the swimming as he just can't cope.
Anyone else have similar problems?

Andy.

[aheaps]

Hi,

My 5 year old son was diagnosed with EDS in December at GOSH and was given exercises to do until we go back to GOSH in June. He is now upto 30 repetitions of each exercise, which he struggles with (he started at 5).

We have just also started swimming lessions for him last week on Sunday and he also does football practice on Saturdays. However, after last weekend he was just so exhausted that he just couldn't function. He was too tired to do anything, cried a lot and got very angry and frustrated. Trying to get him to school on Monday was really bad, he just kept crying etc. (He used to be okay when it was just the football on Saturday.)

I am thinking that he is doing too much and we are thinking of stopping at least one of his weekend activities. We are giving it another go this weekend, but if he is no better then I think we must decide what to do.

I am just wondering whether anyone has any advice?

We are finding this very hard as we know that if we have to stop them then Ben will be really upset as he enjoys going to both, but we cannot have him like that every weekend and having such problems getting him to school on Monday.

Any help and advice would be really appreciated.

Thanks

Claire

[hannah]

I don't have children, but I do have HMS , and had multiple problems as a child. I guess there isn't an easy answer.
It does sound like too much at the moment, and I think it is probably better for him (although probably more difficult emotionally for you) that you try and pace what he does to within his abilities.

Although I wasn't diagnosed until recently, as a child my mum used to 'pace' my activities - I couldn't have friends over the day before a school trip/busy day, or stay up late on a school night, or have more than 2 friends round at once - not in a 'it is forbidden' way, but she would say 'no, not today because then you will be too tired to enjoy tomorrow' I used to be a bit cross for about 5 mins, but that was partly because I knew she was right Despite these 'restrictions' I had a very active childhood - tree climbing, playing pirate ships, cycling all summer etc. just mum would monitor my mood/tiredness levels almost without me noticing it and say no where needed. This has actually been a great benefit in helping me pace now. Even as a teenager I could always say 'no actually, I'll be too tired' when friends wanted me to go out late, and because I accepted it they soon did too.

Having said all that, it is good to encourage as much healthy exercise as he can do.....and I really don't know where the balance is.

I wonder if it would be possible to do swimming one week and football the next? or what about doing 5mins on 5mins off at football (or swimming. Or both) and pace it up from there like with physio?

What does he do after football/swimming? could more relaxing/quiet passtimes be arranged so he can recouperate slowly?

Good luck!

H

[aheaps]

Hi Hannah,

thanks for the reply.

Ben doesn't do loads after football and swimming, he is usually to tired. We usually just let him play on his computer or he watched tv or plays with his toys if he is up to it.

I don't think that there is any easy solution to this as both activities are taught in a group lesson, so we cannot get the pace slowed down for Ben. Another problem that Ben is very competitive and doesn't like to slow down when all the other kids are doing it.

At the moment we are considering stopping the swimming lessons and taking him swimming ourselves, so we can go at a slower pace for him as the lessons are very fast and they have no time to stop as they are kept going all the time.

Well he is back swimming tomorrow, so we will how he goes and then have to decide.

Thanks again.

Claire

[barkingmad]

Hi Claire and Andy,

This is a real hard one to decide really. As you know I have thre kids all with HMS all effected differently, with differing levels of pain and fatigue. I am constantly battling with them, me, schools and physio...to get the right balance for them all.

Hannah is right that the exercise is important.

It is really important to keep Ben strong but it sounds like he is doing too much, the idea is that he does enough exercise but is able to continue the rest of his day without being exhausted. I guess I would do what you are considering...let him do the football if he likes it, and it isnt causing too much injuries etc.

But I would knock the swimming lessons on the head for the time being. Keep him going with his physio exercises tho. I would then do as you said, take him swimming yourselves, but keep his time in the pool down, start off with 20mins (remembering that just being in the pool he has to use muscles etc to stabilise himself), once he can do the 20 mins swimming, the football and his exercises a week without being completely and utterly shattered then increase the time in the pool.

If he cant manage the 20 mins reduce the time by 5 mins until you get the right balance. You could also drop the physio exercises the days he is doing football and swimming, both activities will work on different muscle groups anyway.

It is hard to get the right balance, I have only just tried to let my eldest manage his PE himself, he is 14 now, and decides which PE he is doing, knowing he may dislocate and be in pain and fatigued...this term he decided not to do rugby but swap it for cross country The first Friday, he walked in the house after school in agony and completely fatigued before practically sleeping all weekend!! I debated about gently speaking to him about it but decided to wait and see, yesterday he was sort of ok, and today he has been out all day, so guess it wasn't too bad yesterday...(or he opted out, which he is allowed to do!)

I guess Ben is also having PE each week at school, how does he cope with that?

love Donna xx

[Alison C]

Perhaps ring Sue M and ask advice. I know she often says children with HMS are often tired when they start school on Mondays after an action packed weekend. Would he manage one of the activities mid week perhaps?

Cheerio
Alison

[nonyanomemory]

I have just typed a really long probably too long reply and lost it. So as short as I can, my kids are grown now but fatigued easily as did I as a child. (and we still do now!)

I agree with all of the above. When mine were younger I would offer choices as I am a great believer that if the child feels involved with decisions making process it may take some of the angst out of situations such as these. I agree that possibly swimming on Sunday and football on Saturday is possibly too much along with physio such as you describe. I do think that warming up is important especially for the football as is good hydration for tired hms muscles. I personally would take advice as to whether on football days physio should be excluded as I am not qualified to comment and it may be that his physio thinks that it is especially important that specifically designed physio for the individual is important following sport, I just don't know. We used to make the children feel as though they were't 'giving something up' by offering what appeared to be exciting alternatives, so instead of group swimming classes not always appropriate for the hms child, we would either go swimming as a family fun session. Or say for example, on Sunday's how do you fancy making your own pizza, cake for dad, granny.... or a walk with lots of stops (good pacing) to collect leaves, twigs, feathers etc,, to go home after and make collages, sticking, gluing. We would have dressing up boxes, with imaginative plays to make us laugh etc. We used to do a lot of play dough (when younger) and clay activities when a little older (clay and playdough helps the hypermobile hands to get stronger and is fun). Our house was untidy but the EDS parent and children learn to have down time which can also be fun time. Sitting at the computer for lengths of time or on game consoles can have an equally exhausting effect on the hms child as the sport, so encouraging them to have regular breaks from this will help stop spasms sore muscles. This is why my 18 year old gets extra time in exams, so that she is not sitting in the same position for too long and has ten minute breaks to get up and move around.

Pretty soon especially if cooking or similar is offered and the choice of making pizza or cakes for example or would they prefer to make pasta pictures, or another good one is, getting large rolls of lining paper and drawing round the child, then getting them to paint themselves in, using real buttons to stick on, etc. this is good for proprioception..... is given as choices, the child can feel they are in control and will have forgotten all about group swimming lessons. As a child I was pretty affected by my EDS and was isolated as a result so I was determined that mine did not have the same experience. Eventually our house was one where other kids came to chill out, because our ways of relaxing were fun without being exhausting as well. I think there is great pressure on kids these days to be all singing and dancing, so much so that when I used to work in a school the kids would fall asleep on a Monday morning. Down time definately doesn't have to missing out time. I agree especially that if one has more than one child differing levels of fatigue can be difficult to accomodate, but not impossible and with craft the tireder child will happily occupy themselves sticking stickers, of which there are albums now to accomodate all needs, and the less tired child can play havoc with a paintbrush and paints. Today is bird counting day so you could always print off the bird counting sheets and do that for a while! Although from the look of the weather, it will probably have to be done from looking out of the window! Good luck in whatever you all decide together is for the best. Sorry for the long post but I remember exactly this scenario from when mine were young and have massive empathy. At the end of the day each child is an individual and an hms child, is extra special, I know mine were
nonya

[Alison C]

GREAT REPLY Nonya! This reply makes me think that something like this would be fab on the HMSA main website. Nonya and Mods - what do you think? It is written very practically and positively - lots of fun activities mentioned, and it makes you feel OK about having a non spic and span house!

Cheerio
Alison

[aheaps]

Hi everyone,

thanks a lot for the great replies.

Well we took Ben for his swimming lesson today and he is really very tired. Very easily upset over the slightest thing, loses his temper and is generally very grumpy. However, last week it was Monday when he felt it the most, so we shall see tomorrow. Not looking forward to that as last week I felt like the worst mother in the world for sending him to school.

I agree that exercise is important for Ben but that we are doing to much with him at the moment. We are going to wait until tomorrow to see what he is like and then make our decision.

The thing is, yesterday afternoon Andy mentioned going to visit his sister who lives in an old farm house and they have a huge trampoline, which Ben loves to be on. Of course Ben wanted to go, but all that went through my mind was that we shouldn't be going to his sisters as Ben will want to play on the trampoline etc and he is already tired and then having to go swimming as well the next day. But then I thought are we never going anywhere again because is is doing football and swimming? What about in the summer when we can go to the park, beach etc? I honestly think we will have to knock at least one of them on the head.

Donna thats a good idea about limiting to 20 minutes in the pool then adjusting the time if needed. I think that we shall try that.

Ben has only just started PE at school in reception class (one lesson), his next one is Tuesday. So we haven't had the chance to find out how exactly that will effect him. Although after his last PE lesson he was absolutely shattered and slept all through the night until 5.30am, which Ben never does.

We cannot even change one of the activities to after school because Ben is already so tired after school.

Nonya, what brillient ideas for keeping kids occupied.

Well must go. We will see what he is like tomorrow and I will let you know what we decide.

Thanks again for the replies, it has really helped a lot as it is a really hard decision because we know that Ben will be disapointed if we have to stop swimming or football.

Take care

Claire

[aheaps]

Hi everyone,

Well this morning Ben is still very tired and it was a struggle to get him to do his exercises etc. I don't think that he was quite as bad as last week though.

I decided to phone GOSH and ask advice. I didn't get hold of Sue but spoke to someone else in physio. She advised that we keep it going unless he is exhausted all week at school. If it is only for a couple of days then keep it going. I have mixed feelings. I know that she is right that exercise is important, but at the same time it is really hard watching him being so tired and upset.

Oh I guess we have to follow GOSH's advice and keep it going for now, it's just very hard watching him.

I did ask Ben which one, if we had to stop one, would he rather do. He did say swimming. So I am still thinking of stopping the football for now until he gets more used to the swimming.

I cannot believe how undecided I am on what is best for my child.

Claire

[Alison C]

Yes this is a tricky decision.

As he is so young, maybe focus on things which are fun! Good idea to ask him what he prefers.

My thoughts but there is no one answer!
- football - when you kick the ball, you extend the knee - the physio exercises are about extending the knee (going into hyperextension) so football would backup the exercises I guess, and it is a team sport - great for learning how to be a team player! There may be football clubs at school? Also great hobby later on I guess choosing who is your football hero!
- swimming - great for proprioception etc as it can be quite challenging knowing where your body is in the water - if the water is very warm, even better for muscle care, and it is great to be non weight bearing and exercising; my son's school starts swimming lessons in Y3 by the way with the aim of achieving the national curriculum of 25m - my son in Y6 is yet to achieve this so is still going to the pool with the school, however does go swimming each weekend (has done so from 4) however is way behind his age group but neverthess has true grit to do his best and is finding it fun
- wii - if you have to give up one sport, how about trying games on wii as a substitute?!

The exercises are tough to do - is he on weights yet? He needs to find something where he feels happy about moving as the exercises are not necessarily so at times.

Cheerio
Alison

[Alison C]

PS
I have been thinking this week that I really need MR MOTIVATOR to keep me and my two children going with their exercises! Maybe we can set up a support page for those of us who do GOSH exercises at home and who have little backup locally from physio? This may help us?

Cheerio
Alison

[aheaps]

Hi Alison,

I agree with you that both forms of exercise have there benefits, but although he enjoys both he has a preference for swimming at the moment, although he is terrified of putting his face in the water.

Ben starts his weights this weekend and I must admit I am not looking forward to it. He struggles now with the exercises. But I agree with you that a new thread would be good for exercises at home. It is hard trying to keep a child motivated especially when they don't enjoy doing them.

Ben does also see a local physio, but to be honest I don't think that much of her. Don't get me wrong she is very nice but that is not going to help my son. She wants Ben to still be doing the exercises she gave him before we went to GOSH as well, which I'm sorry but I think that he is doing enough. Besides from Ben's report from GOSH they are not expecting him to be doing the exercises from the local physio either.

Are your children using weights at the moment? If so how are they finding it?

Claire