Hypermobility and low muscle tone in children (not babies)

We have a very recent diagnosis of hypermobility/hyperflexibility and low muscle tone in my almost 4 year old.

He has it quite badly and scored off the charts for internal hip rotation and it turns out he has no core strength. The physio is astounded that he has reached the milestones he has, and perseveres with so much, even though he clearly is doing it tough.

What has hypermobility meant for your older child? Is school that much harder when you struggle to sit (especially with so much hip rotation) because your core is weak, and you have to lean on your elbows to hold your head up?
He can never sit still now at 3, almost 4. I never knew it was because he physically can't.
And what about tiredness and school and kinder? Is it obvious that they can't keep up?

I feel really sad for my boy. Sure, bending your thumb backwards is a great party trick, but not being about to stand properly because his muscles are so weak is a bit more serious.

Everything I read is a so negative. When we strengthen him up, will he be able to keep up with his peers at kinder next year? Or will these things always be a struggle?

Wow, isn't it amazing that he's done so well! I'm curious to hear more, too, as DD is similar. She struggles with gross motor stuff, but seems to deal with it all by asking to be carried around a lot.

If affects up to 10% of the population apparently. I was hoping someone here might have some advice. I guess I just want to know whether, with muscle strengthening exercises, he will function normally, or is he always going to struggle.

Yes to the carrying thing. Honestly, sometimes I thought I was going crazy. It's a lucky thing he's so light still or I'd be at the physio for a bad back.

Does DD wake at night often? (She's going to be two soon - wow!!). I am hoping these things will improve once we help him get stronger. DSs legs hurt him so much. He wakes very frequently at night crying.

DSs gross motor skills are average, but this is more as a result of trying doubly hard to get half as far. He can't get himself up from lying down - he still needs to roll over and use his arms and legs. His upper body is weaker, but I guess he doesn't ever really get an upper body work out!

His flexibility is, putting it simply, quite revolting! I had no idea until they started manipulating him. Yuck! I mean I knew about the thumbs because I got them caught in his clothes when he was a baby and I thought I broke his thumb. I nearly cried.

I'm hoping someone can tell me how their child copes at school and how long we will need to give him special exercises for.

Three!
DD is same, but probably 9-12 months behind. Sleep is getting better, though. She usually wakes 2-3 times, but heaps better than before.
I always used to worry about her shoulders when I was moving her around as a baby, but she was always fine and I convinced myself that babies are just flexible and maybe DS had been the same. DD has seen physio, who's only mentioned potential problems with feet & legs and that she might need special inserts, but that they wont' do that till later, unless she's in particular pain. She rarely says she is, but still quite young. I think she's just used to being tired and sore, though. She refuses to do any special exercises :)

No advice sorry but was wondering what prompted you to investigate? A lot of what you wrote sounds like DD1 who wakes with sore legs often, tires easily so often is carried on our shoulders and can bend back her thumbs in disgusting ways, does the splits and is just generally flexible. She's tiny and not very strong, you notice it if you try to dress her and she can't seem to push back against the pressure so just flops around if that makes sense. Feeling bad for not putting it all together, just thought it was to do with being littler.

I meant three, MadB, sorry, not two. Thanks for the link. I need to recharge the iPad. Too much reading.

JF - he is clumsy. If in a group of children they all take off to run, I would know that DS would trip over straight away. I thought he was pidgeon toed, but only a little. I honestly knew it wasn't right, but I didn't know what. I never dreamed it was this. I didn't even know this existed! He constantly has bruises on him from falling and bumping. And the waking at night in pain with sore legs and feet. That played on my mind a bit.

There is a test they do with a thing that measures the degrees that their joints flex. I was nearly ill watching her do it to him. I have never tried to challenge his limbs or force his joints. I was not aware that they all flexed quite so much.
He always wants to be carried. I now know why.
His muscles are small, but hey, he's a little guy, and I never noticed. I'm not big on comparing my kids to others. He always sleeps curled head down bum up. And always 'W' sits. ALWAYS. But then my other DS 'W' sits too. Oh, and his shoes always fall off. It's silly but apparently we all hold our shoes on with our feet a bit. He can't.

It's genetic. So maybe someone in the family is the same, but none that we can think of.

ETA - don't feel bad! I had no idea for DS. Just being clumsy and bending your thumbs back seemed hardly enough reason to take a kid to the Dr. And the waking at night thing, well, he's never slept through the night since he was born.

Yeah, you don't know it till afterwards, as with most things.

DD refused to put any weight on her feet till she was 13 months old, which was why we went to the physio. Still no idea why. I try to discourage the W sitting, but she can't sit another way without a chair. And same sleeping posture, too! It's cute, though.

It hadn't occurred to me that she might have trouble at school, but of course she's going to find it hard to sit on the mat and at a desk, amongst other things.

That's really interesting about the shoes because we have just been through a huge shoe debacle as her old shoes have literally worn right through so are unwearable but she keeps saying any new shoe she tries doesn't "work" and we thought it was just an attachment thing plus the new shoes just needing to be worn in a little but maybe there is more to it and the old shoes which did have a lot of straps all around the entire foot were easier to keep on or something like that.

She is quite clumsy and always in bruises/grazes but then she is kind of adventurous so we thought it might be she just pushed the boundaries more than most.

She definitely wants to be carried often. I can't think of an outing that doesn't end with us carrying her in some way.

We thought the night waking with sore legs was either just tiredness/growing pains or just a habit. She woke often as a newborn but thought that was hunger due to being so small. She's a bunny sleeper too, that bum up head down position. She was a late walker. A very, very late jumper, if that could be related.

And the big thing is watching her today, I notice when she sits on the floor she always has her hand/s on the ground too to support her so I asked if she could sit with her arms not touching the ground and she couldn't. She kept rolling forward back onto her arms/elbows or complete tummy to the ground. Hard to explain...

I never even thought more of the flexible thing, I just thought well, kids are flexible right?

Seems like something we should definitely look into. Mostly feeling bad because a lot of these things have been pretty frustrating although we always try to be outwardly patient, there are definitely times I have really just needed her to walk PLEASE!

Kids with hypermobility tend to have skinny feet and ankles, which also tend to roll. It makes getting good fitting shoes quite hard.

Two things, firstly, thanks for alerting me to this in kids, I will watch my DS as I think he tends that way although not severely.
Can you tell us more about the exercises he's given as they come to light?

Secondly- I was a bit this way as a kid. Again, not severely, but I thought maybe my experiences would help a bit?
I have hyperflexive joints but that has meant that many of my muscles have tightened to compensate so I am not very flexible in some ways, but crazy flexible in others. I can still W-sit, my elbows "bend backwards" but I can't touch my toes. (I do have very long legs though, so thats my excuse!) I have also had a weak core but have been working on it for years and can now "plank" for 40sec!
I was/am not good at sport, and preferred to sit and read- I was very academic (am now doing a PhD)
I think the sports thing would be different for a boy though.

I have incredibly lax joints in my feet and have no arch at all. It was a big turning point when I got orthotics as this stopped a lot of the knee and ankle pain I was getting when I was in early primary.

I get a lot of back and shoulder pain but it is all related to weakness/imbalance and if I stay strong and stretched it is totally manageable.

Having a good physio has meant the world of difference and I think if I'd had this as a kid things would be different. I wish I had been encouraged to persevere with a sport (swimming is by FAR the best as it is zero impact) as I find it hard to keep strong enough.

hmm, writing this has been a helpful self-reflection too, so thanks for that! I really do need to find a way to get to the pool this pregnancy... (as well as finish my thesis eek!)

All the best for all my little stretchy buddies out there!!

Lozzy I am like you I have flexible joints but the muscles are tight so I have to see an osteo regularly and go to the gym to loosen and straighten everything out. My knees and back are then worst I struggle sitting still for long. Dd1 was diagnosed this year it's only mild though .her muscle tone is pretty good, she swims and did dancing for a couple of years. She has trouble sitting still so we are working on her gross motor/ coordination to help. Apparently as it develops it will improve her ability to sit still. She prefers to sit in the w position, she had hip dysplasia as a baby and it's common for them to sit that way. It's only now st the end of the year that she is sitting cross legged.

Just a note about the W sit position.

Often children who sit in this position find it more comfortable to sit on a wedge or a cushion which helps them to be more comfortable and able to concentrate more. Google Sitting Wedges for more info.

I am thinking about a cushion for dd next year if she is still having trouble.

Just came across this. My DS 3yrs has low muscle tone who we are seeing a physio and O.T about through local community health services. They haven't mentioned hypermobility with my DS, but some comments about not wanting to stand on feet, ankle issues etc ring true for us. I was concerned that as a baby when held upright he would never put weight through his legs. I called it his jelly leg act. If only I'd know how accurate I was.... He also had 'clicky' feet. I could feel clicks in his feet when I held them.

When we pick him up he just sort of hangs like a rag doll. Very rarely will he wrap his feet around my waist.

DS needed lots of encouragement to sit and didn't do this unsupported until at least 15 months. He took his first steps one week away from 2.5yrs - Australia Day weekend this year.

Physio is concentrating on strengthening his muscles and increasing his endurance. He too likes to be carried often and especially when he's tired. O.T has started working on fine motor skills in the hands 'in preparation for school'. She has also shown us how to assist him sit correctly so he's well supported (block under his feet so they are flat and touching, cushion behind his back) and can concentrate on what he's doing rather than trying to stabilise himself. Unsupported he will sit for a little while but then stand at the table to colour in as an example.

I also fear what this will mean long-term for my son. I feel we're only just catching up to others in his age group but I can still see how behind in mobility (and ease of doing things) when in the playground etc. I'm trying to be okay with this, but I dread the day he comes home after noticing he can't keep up, or comments have been made.

I meant to say thank you to everyone for replying. Thank you.

Our exercises are mostly animal walks for now. Walking like a crab, gorilla, etc surprising how it gives a little mini work out. I need to print off some matching card so we can play it as a game more. I don't want it to be a chore.

Shoes need to have a sturdy heel counter, flexible in the middle, but with buckles/straps etc so that he does not have to hold them on with his toes. We have one pair that is really good right now, but I need a new pair of sandals for him. His current ones do not fit the bill.