Low muscle tone, trunk muscles, hypermobility

[claw4]

Ds has low muscle tone, poor trunk muscle, hypermobility, lots of sensory difficulties etc, etc.

He had a day off of school yesterday and i took him with me to the shopping centre to buy a few bits. He appeared very tired, very quickly, then spurts of energy. He sat on the floor in the shops whenever possible and leaned on me when he couldnt sit, when standing still. Yet the minute we came out of shops and into the street, he was running, jumping, spinning etc.

It is boredom that makes him sink to the floor in shops?

or standing still that he has a problem with?

How can he go from appearing to be so tired, to jumping around in a matter of minutes?

Anyone else have these difficulties, is it quite common?

I have no idea why they do it claw, but Dd3 is the same. She dangles off me whenever we have to stand. Or if we have a trolley she drapes over it. She will sit down in shops too.

Then like your ds as soon as we go outside or if she sees somewhere she wants to go she is bouncing like a tigger.

Sorry no advice but you are not alone

Thanks Ineedalife, it would be more clear cut if they were either always tired or always bouncing wouldnt it!

How old is your dd? Ds is 8 and to be honest i had really noticed just how bad he was at sitting on the floor or dangling until now. But this is probably due to me avoiding taking him shopping with me, whenever possible!

I have always notices how bouncy he is. Do you think that sitting or even laying on the floor sometimes and the dangling, could be sensory seeking behaviour too, similar to the bouncing? Even though that is conflicting

my guess would be energy conservation. If you have low tone etc, everything you do takes more energy than for anyone else, so at times when you don't need/want to be active then best take that opportunity to get some rest so that when you do want to run around you are actually able to do it. Dd3 is the same, she likes school and is pretty active there but then crashes on the bus on the way home or catches a nap after her lunch.

Thanks Thenijagoose, his OT report says that he leans on tables in school or slumps in an attempt to 'ground himself' and 'provide additional feedback' hence my sensory seeking comment. But this is conflicting, as when out with me, he could easily jump or spin or something, instead of laying/sitting on the floor. Conserving energy, would make sense.

I would say this is more to do with sensory issue than his muscle tone, DS1 always leans against walls etc but he tends to do this when he is taking his surroundings in and adjusting to what is around him.

I imagine it'll be a combination of both sensory and energy levels, leaning and spinning will both provide the feedback he needs, he's probably finding a balance between the two. You know it's not going to be simple

Squid/Theninja , its confusing isnt it, even when i have an OT report!

You've described my DS exactly, you are not alone!

Sometimes even climbing the stairs is too much for him and he lays down on the landing, complaining that his legs are hurting and he's exhausted. 10 minutes later and we're walking up to school and I'm having to keep him close as he's doing his usual veering off towards the road, running with his Mr Spaghetti legs all over the place!

We avoid shopping wherever possible - he gets so stressed out about it and asks me why I'm 'punishing' him by making him go!

The hypermobility and low tone affect DS in that he fatigues really quickly even doing the most simple tasks and during his physio. But his sensory problems (especially his proprioceptive difficulties) mean that he's not actually really in control of his movements, so I'm not sure he's even aware of how much energy he's using up (now wonder he's so skinny!).

my ds2 (dyspraxia,hypermobile, possible sensory issues) is like this. He will always sit on the floor in the shops if we stand still. The OT said that he would find standing still difficult/tiring because he would have to lock his joints.

Flying, thanks it does help to know im not the only one

Ds seems to have 2 modes, very tired or hyper, there is no inbetween!

Robot, thanks that would make sense, its the standing still thats the problem. Come to think of it, he never stands still, he is either spinning, jumping or sitting/laying on the floor when required to do so.

DS doesn't do standing still either, apart from when he's transfixed on a computer game, it's the only break we get from his continuous movements!

Flying, thats interesting too, ds tends to hyperfocus and be oblivious to everything if he is doing something that interests him. So maybe a degree of motivation to keep still involved too (although he is usually seated when he does, not standing and swinging his legs about, so maybe not actually completely still!)

Ds is the same, completely switches off when on a game, oblivious to anyone or anything else. The OT and Physio have said it's not good for him though as he's hunching his shoulders and is tensing up which isn't good for DS's shoulder/pelvic weakness.

It's so hard finding a balance, isn't it? Even mealtimes are an issue as he totally goes into a daze when eating but the legs are going ten to the dozen. Like his body separates into two completely different halves, like some sort of Bionic Man!

He makes me feel dizzy just watching him

Sorry claw, had to go to work. Dd3 is 9 and I avoid taking her shopping where possible. She is OK in Aldi or Lidl with no loud music/announcments but Asda and Tesco semm to turn her into a different child.

We have a gym ball at home for Dd3 to sit on when she is really fidgetty. Some days she cant sit on the settee at all and she is rarely still for more than a few seconds. Her posture is appalling and when she is sitting on the floor she is so hunched up.

She leans on one elbow when she is writing and eating too. We have found a wobble cushion very helpful at mealtimes.

She is getting less hyper as she gets older but I think it is because she is working so hard at school that she is pretty wiped out by the time she gets home. It is very different in the hols when she is constant on the go and shoots out of bed at first light.LOL

When we are away camping she rides her bike round the site all day long and seems to have endless energy.

Flying, ds has lots of difficulties with his shoulders and particularly his upper body. Im quite lucky in that ds isnt really into game consoles. He is however into sitting on his bedroom floor, lining things up, same difference i suppose really, he would do that for hours if i let him!

Ineedalife, no worries just popped out myself, to finish getting the bits, that i planned on getting yesterday! I cant take ds food shopping, he has an extreme food phobia, but he is generally ok to take into other shops, apart from the constant sitting/laying on the floor, spinning around and constant moaning about being tired!

I have a sensory diet that i do at home, which tends to cut down on the more dangerous seeking behaviours, he loves to climb high and drop, knocked out his front teeth doing it.

Ds cannot ride a bike, but he can bounce on the trampoline and is very agile on it, which is surprising given his difficulties. He tends to walk very stiff and upright, but with floppy legs and arms, if that makes sense!

We've seen an improvement with the shoulder weakness with his daily physio which we started in December, even thought he hates having to do it. He can now fasten the zip on his coat (might take a few times but he gets there) and I'm convinced it's a result of him having a bit more strength.

Things like press-ups off the wall have helped, also wheelbarrow racing, lying on his tummy with his hands and legs raised and playing games on all fours and having to reach forward to 'take a turn' (the latter doesn't happen much as DS isn't into games but we got a beach towel with noughts and crosses on it and he will have the odd game of that). You've probably been there, done that so ignore me if I'm rambling on!

No not at all Flying, its always useful to share tips and advice

We do the press up off the wall, wheelbarrow racing he just doesnt have the strength to support himself and collapses in a heap, gives us a giggle at least!

He can pull a zip up and down, he just cant do the intial putting the zipper bit into the other bit to get started on his coat, he cant do buttons or open a packet of crisps for example, cant unscrew lids etc.

Dd3 does physio everyday to strengthen her shoulders and core.

It is another thing we use the gym ball for, she lies over it with her hands on the floor and walks forwards and backwards. She also rolls it up and down the wall.

Tbh, she hates physio and she has been doing a lot of it at school. She doesnt play them up like she does me.

She is also a leftie which makes zips and buttons tricky. She has a problem with buttons and has refused to wear trousers or skirts with buttons on for a long time.

We also have a trampoline and she swims every week.

She is starting kayaking next month so i am hoping that will help her shoulder strength.

DD can run and bounce for ages but she cannot stand still either and flops down or leans on anything in her vicinity...

Ineedalife, ds is a leftie too. We started swimming a couple of weeks ago, ds also has a water phobia, so i am just trying to build up his confidence, by the time i actually persuade him to get out of the car, then persuade him to get changed, then to dip a toe in the water, its time to get out, but we are getting there, slowly!

Kayaking, wow, sounds like fun, i dont think we could stretch to that just yet

DS doesn't make the best wheelbarrow either, it's like wrestling jelly just trying to get him up and away! Same here with buttons, crisp packets (he sometimes manages but the crisps end up all over the place) and lids, also putting toothpaste on the toothbrush is a no-no, but I'm hoping it'll all happen at some point (I have visions of doing his buttons up when he's a grown man!).

Doesn't help that he's not remotely into sport of any kind; makes me wonder if he naturally avoids it as he knows he can't do it very well, or if it's his personality. Probably both!

We do the gym ball thing as well Ineedalife, and another exercise where DS has to balance sitting on it and rotate his arms round wide in a circle, however this is a work in progress, it's fair to say! It's really tricky for him to keep still once he feels that ball under his bum, never mind move his arms at the same time! He must get a lot of sensory feedback from the ball so just wants to slither off it, it's quite funny to watch

LOL wrestling jelly is exactly it, someone on this thread said about locking your joints and standing still. Ds def has difficulties with this, he cant lock his joints to keep his legs straight for a wheelbarrow or his arms come to that.

If he does straighten his arms, his elbows bend inwards. No ds is not sporty, i think he would like to be, but he just cant do what the others do or is very bad at it. He hates PE too.

Dd2 the same. She was well over 5 before she could stand still. (literally, she couldn't balance standing still because of the muscle requirement - it was easier for her to stay upright if she was moving. So she could walk across the room and then hold on or lean, and eventually rock backwards and forwards, stepping, but was unable to stand still and stay upright.)

We sent her to ballet. . The physio loved it, and it really helped. We do all the other gym ball/ wheelbarrow stuff, but tbh the ballet has helped the most.

She has two blocks of riding a year, as well, which is great for core tone.

Can't believe you all have dc like mine! Ds2 has weak core, overly mobile joints, propreoception, gross motor sequencing and planning delays, poor sight, speech delay/stammer and last but not least migrane/epilepsy. We don't get any physio as she just gave us a list of exercises and left us to it! We have had OT assesment and report but no further contact. The OT did say that even though ds2 joint problem makes him fall easily, the propreoception drives him to run around so he gets a 'sense of himself' and he feels safe. He runs round like crazy even though he is sweating and red-faced till eventually he can sit down if he's leaning on something to keep him grounded. His nursery now give him movement breaks so he can be calm enough to sit at a table top activity. The OT explained to me that if I put my arm in the air I would just 'know' my hand was on the end of it but ds2 wouldn't and that movement or special exercises give him that. One thing she suggested was rolling him up in a soft mat (leaving his head out of course!), or rolling the excercise ball over him while he's laying down.....he loves it! I've just started looking in to horse riding for the disabled but they seem unwilling before he is 5yo (he's just turned 4yo).

dd2 had a lycra suit to aid proprioception. i think she was around 3 ish.
some areas will provide them on the nhs through ot, some ask you to find private funding.