HMS fatigue in children

[muppet]

Hi,

I thought i would let you know what i have done with my 7 year old son.

He tried doing football and loved it, it was a small group of kids and very friendly, they were aware of LJ limits and were very good, after about six weeks the coach decided they would go into the mini league and play matches. I was then told that to play matches he would HAVE to wear proper football boots or he couldn't play. We looked at football boots but his insoles wouldn't fit and there is no ankle support at all so we gave up and decided to break it to LJ that he couldn't do matches, he didn't mind missing them to much as he still did the practices but then it became most weeks were matches rather than practices, so we went up and watched one. I am so pleased we didn't let him play the kids were quite rough and where his team would know not to tackle LJ roughly the other team would not have been aware and i think he would have ended up injured if we had let him play. I have looked about for somewhere else but i have realized that as the boys get older they become more competitive and are not going to be able to think about who they are tackling before they do it so we have given up on football to look for something that he will be able to enjoy doing for the long term. I have to say that not doing football has meant we have a more relaxed weekend as he is not so tired and grumpy.

Instead LJ goes to Beavers which is brilliant they meet once during the week, some weeks are crafty some more active but its very much team and friendship building they can do camping and stuff to at the weekends but again you can let them do an hour or a full day/night.
He also horse rides which has been excellent because he can always do it even when he is sore he can manage a walk round the block when he is not so bad he can trot, canter and jump!

I have not been able to do swimming lessons with LJ because of other health problems but i am guessing that once your son can swim then you can go swimming as and when is good for you so perhaps keeping up the lessons until he can swim and then changing the times to suit you may mean if he is desperate to do both he could put football on hold for a while until a time when he can stop the swimming lessons and go maybe during the week, I know you have said he is tired in the week but as he gets more used to school and gets stronger this may change, reception seemed to be a tough year that took all the children time to get used to even the strongest kids got tired. I guess what i am trying to say is if you are not commited to a specific time you can just be spontanious and say your having a good week lets go swimming or you know what lets go chill this week your a bit tired.

Sorry if this is a bit rambled but i hope it helps

Helen

[aheaps]

Hi Helen,

thanks for the reply. I must admit that I am more willing to give the football a miss because when we were there on Saturday some of the older kids were kicking the ball about waiting for the younger ones to finish. They were a bit rough with each other and it worried me because although the football is not like that for them yet, they are still playing more 'fun' games than football at the moment, it will get like that with more practice and the injury side of things worried me too.

This weekend we are going to let him do the swimming, as that is what Ben wants to do, but not the football and see how he gets on.

I'm hoping that as he gets stronger we may be able to do more things with him or as you say change the days that we do stuff. We will just have to play by ear I think.

Claire

[nonyanomemory]

Gosh it takes me back reading this thread... mine being so much older now, so thank you for the memories

Helen that was a brilliant post. Claire, I am so pleased you are getting support here for all of this, I think the pressure on making the right decisions for a child with hms is hard, particularly with the physio demands and expectations. Some kids as they get a little older learn what is right for them but at this age its difficult isn't it, to find the right way, not to wrap up in cotton wool and also not watch them in pain as a result of too much too soon! Mine at reception, used to get completely exhausted and yet when I look back at my childhood, I was still at nursery and had a sleep in the afternoon at the age they are marching around doing this that and everything else. Helen, you sound like you have found a happy balance and really agree actually about the football. Only a personal opinion but I think their is a great deal of bravado and an expectation that getting hurt is OK, a little more than the normal rough and tumble. I actually found juinor school pretty accomodating, it was when mine started secondary sport became problematical, daughter's physio has still not forgiven PE Teacher making mine do long jump, the impact on her knees, ankles was ridiculous. Fortunately after Year 7 she found her voice and expressed herself I am afraid in no uncertain terms what was and what wasn't achievable for her.

Claire I know the physio is a hard regime, hang on in there and with time I am absolutely sure your little one will reap the benefits, all of you with younger kids are lucky as it WILL help in the long run. When mine were little none of this was available, and as a result I am sure my eldests EDS is worse for it.

I am going away now honest.. but on the trampoline front, next time you go perhaps go armed with games (not currently sure what is the 'in' thing) A good distraction for a while from the trampoline could be a treasure hunt, takes a little while to organise but does provide down time and bonding with older and younger children, helping solve clues etc. Another good thing we used to do when visiting relatives or they came to us was a cardboard box filled with shredded paper and fairly cheap wrapped presents, simply wrapped in newspaper is fine with a big G for a girl and B for boy if appropriate. With colouring books, crayons, a story tape (although these days I expect it would be a dvd or cd). You can include a present for the grown ups too, which includes an activity to do with the children. i:e: read a story, a pack of age appropriate cards to play a game of snap, happy families, etc. You can find that even the most reluctant adult can find themselves doing something they wouldn't ordinarily do! charades etc.. allowing the trampoline but again distraction with other fun stuff may help avoid total exhaustion.

Good luck Claire.

When I look back I can smile now at how much I fretted somedays about what was right and what wasn't but having faith in yourself and your gut feelings on things will help. There are a lot of pushy mums out there to live up to, just ignore what those do and continue to do what is right for your family unit. Here's a round of going out to all the mum's of HMS/EDS kids, for doing such a fantastic job, bringing up a child with hms is not easy I also agree with Helen, this age when the children are at school and activities are full on, is pretty exhausting for all of the little ones.

[aheaps]

Hi,

I'm really glad that I have asked everyone for help over this matter, because it has been difficult. Everyone has been really great.

I am also glad that Ben is getting the help that he needs now as I know only too well that this type of help wasn't always available. I was diagnosed when I was about 12 (I am now 34) and I certainly never received the right help and believe that is part of the reason I am so bad with it now.

I agree that everyone raising children with EDS are great as it is not easy and we are faced with some difficult decisions. It is also not easy having to watch your child in pain or suffering with so much fatigue.

Thanks to everyone for their help on this.

Claire

[jax]

Hi all, Hope you don't mind if I add a bit on about my son, aged 9. He also gets very
tired and on weekends just sits playing computer games or playing with lego. He kicks
up a big fuss about going out unless it's been planned way beforehand.
He has a busy week so I figure he could do with the break so I allow him to indulge
in the computer games as he seems to enjoy it. I know when he's getting tired when he starts
getting emotional and upset or angry. It can be difficult to manage but sometimes
it can be funny too. Recently he went for a sleepover at grandparents/family
and had to get on several trains to get to London. Apparently he moaned and
winged all the way, then refused to get in the car picking them up because he
had to sit in a toddler seat as there was no space!. May be it is important for family to
see what we have to go through sometimes!! I think some people think it's easy having
just the one but for us it's a full-time job! My son probably thinks we're the ones who are
hard work - ha ha.

I remember when we were in Italy we had walked for miles (got lost) and had to get on a boat
and my son shouted out "get me off his deathtrap" - it can be embarrassing
but amusing at times as well!

Jax
xx

[nonyanomemory]

Jax said - I know when he's getting tired when he starts getting emotional and upset or angry.

I'm not the only one then

I really understand about the weekend thing and the computer etc. see my ealier post on encouraging the hms child not too sit too long at the pc/gamestation etc.. I think I put there about my 18 year old getting extra time in exams with regular ten minute breaks to get up and move around. She also used to be allowed to get up and walk around in lessons, very irritating for other kids who would get into trouble for it! Professor Grahame insisted that she have this. Sitting in the same position can contribute to an achey hmser as much as overdoing it. Perhaps a timer, may help for computer time.

Thanks for your post Claire, its difficult I find to know whether I am putting to much info and seen as interfering old bint or not enough and not really of any help. I completely agree Claire, I am mid forties now and wasn't diagnosed until about 18 years ago despite very many problems as a child, they just didn't know then what they know now! My daughter didn't get any proper help until she was a teenager and that was when many of her issues with her joints etc had got really bad. What they do with the kids at GOSH is great if a tough regime.

I think this thread is great, I wish I had had one like it when mine were little. Looking back Jax I think I should have let my extended family do more so that they understood better. Hopefully when mine have kids if they do have hms, I will understand! Although in saying that 18 year old and I had a very rare row earlier and I told her she was behaving like a toddler and she said I was too. So there's toddler tantrums in our house too, despite our ages

Take care all and please post here to grumble etc reach out for support instead of struggling emotionally especially alone, like I had to years ago. It is great to see everyone pulling together to the same end. Happy kids despite the hms - it is achievable!!!

[jax]

Thanks nonyanomemory for the great post - very positive and left me feeling on a high.

I don't know what I would have done without having the support we have had for my son
and ourselves. I do feel we are very fortunate to have the wealth of information available and hopefully
it will only get bigger and better for generations to come.

I am seeing where you are coming from with sitting for too long on pc/gamestation - it is
a sore point here at home at times. It certainly does lend to some very "interesting" postures
and could cause problems in the future if we don't attend to it now. We do try and interrupt
on "negative" posture but it's not always easy when you feel like "slumping" yourself at the
end of a day.... I'm determined this w/end to get some "moving about" going on! My
husband is also on the games and pc all the time and um er I'm on here a fair amount.
Still I do enjoy some exercise (even when it's painful!) and do go swimming and gym/pilates
a fair amount. I feel it's difficult to change two minds on a subject but I will certainly keep
trying....

I'm glad I'm not the only one - with regards to the "tantrums" - thanks for sharing.

Son's gone to quiz night tonight for the first time and boy did it take a while to get him
going - He was not having it but my husband succeeded in getting him to go in the end.
I'm sure he will enjoy himself once he's there and he can relax when he gets home.

Take care
Jax

[janey]

The 'interesting positions' made me smile, I find Rosie at her desk in all sorts of weird positions! I have got her a wobble cushion for when she is at the computer so at least she is still working some muscles while there. The fatigue aspect to HMS has been a tough one for us but now Rosie is 16 she is beginning to see the point of pacing (and the reality of it). It's tough tho' but for example, this weekend she is not going to a party & sleepover in favour of a drama rehearsal on Sunday and that's the reality of it for her. It gets a lot easier when they begin to make these decision themselves rather than being told by mum and really useful for independent living (not that my kids leave home readily)!!
Janey

[ames06]

Hi i am new here

my daughter is 2 1/2 and was diagnoised with hypermobility at 20 months, her feet were facing inwards when walking and then the doctor started doing crazy things with her legs.
everyone else notices her bendiness more than i do now because i am use to it, but she is extremly flexible.

she is however hyper active too, she spends the whole day jumping and climbing and running and never stops, but i have never really thought about her sleeping being anything to do with her hypermobility until i read this, she has a nap in the day and everynight she is exhasuted by about 6 and begs me to go to bed