Late walking/hypermobile daughter 22 months

[lulurose]

Finally got a physio appointment for my dd2 22 months who knee walks everywhere and is still nowhere near walking. They have said she is hypermobile but didn't appear too concerned. Does anyone have any advice/reassurance regarding this, I am worried now, she cruises a little but is still happier on her knees. Have been told to get her some shoes that are more fitted up and around the ankle.

Thanks

My DD is 21 months old, and has hypotonia and hypermobility. I did find the physio useful as she showed us various techniques and ways to encourage her to get up and walk, and also it was very reassuring as she assessed her movements and could tell us things were normal and she just had the hypotonia. She also fitted her for Piedro boots, which help her to stand MUCH better.

I do feel that most of it IS down to her and that she is just improving all the time naturally but the support of the physio has been really helpful to us. She is now cruising everywhere at high speed (and has been for months) and is climbing everything, but has yet to walk alone.

It seems unfair to me that she has been given boots and your DD hasn't, twinmum3, I would push for them!!

thanks, I will call my health visitor tomorrow as just been told by physio that she is returning to S Africa

fab thread, lots of great info and thank you to everyone who has put their stuff down. I also have a DD who has hypermobile knees, ankles, hips, elbows, wrists and fingers... pretty much everything? she has piedro boots too, and i did wonder why she could grasp a pencil but not do more than a circle without doing a fancy twist-type move and dropping it - you ladies have enlightened me. On nights like this i love mumsnet.

my dd2 has general hypotonia and hypermobility in all her joints...the physio said that there wasn't much she could do (we went regularly for monitoring over the space of 9 months) but to go with anything dd2 showed an interest in. We went swimming every week using floats (not armbands), lots and lots of soft play centres, playgrounds and jumping on our small trampoline holding on to the handle. A year later and she's now able to jump independently and can now walk fast (but not run)....but at 3 and a half she's managing ballet lessons. So, in short, our experience was that they get there in the end!

Catesmum - lovely to hear your reassuring post! Our boy is hypertonic and hypermobile and at 23 months is finally making good progress on gross motor skills and about two weeks ago took his first independent steps, which is all very exciting!

Am interested to hear why you used floats not armbands and any other advice you have on progressing gross motor skills. We just got one of those small trampolines for the house and a blow up bouncy castle thing for the garden also.

Herecomethegirls pleased to hear everything is progressing well for you also!

HayleyK - I suspect catesmum doesn't use armbands because her child's shoulders and the rest of her body will sink below the water, while only the floats and the tops of her arms remain on the surface... That's what happened to my ds1, who is hypotonic and hypermobile, when we tried armbands on him, because he is so incredibly loose jointed around his shoulders! A float jacket was much more successful.

Swimming, trampolining, soft play areas, walking, pedalling a tricycle are all things that are worth encouraging your child to do (tricycle pedalling may take a while - my son just couldn't muster up the force to move the pedals for quite a while, unless on a totally smooth, flat surface). Later on, activities to strengthen the shoulders and upper body help with learning to write (for which you need good joint stability and strength). Writing on a blackboard, so that you have to have your arm up in the air to write, helps. So does wheelbarrow walking, stirring things, doing playdough, etc.

My son is now 4, and can run, jump and skip. He can also write - he used to be unable to apply enough pressure to make a mark with a pencil. He still has very pronating ankles and still finds stair climbing and descending quite hard work, and bicycle pedalling extremely hard work, but he clearly will get there in the end - he just needs to strengthen his muscles a lot more than most children to compensate for the loose joints.

Sometimes severe cases of hypermobility can cause problems later in life, typically with onset at times of growth spurt such as age 7 or 8, puberty or even in pregnancy.

Dd has what is known as hypmerobility syndrome which can be defined as hypermobility+pain.

She learnt to walk a little later than other children but not dramatically later, learnt to run just a little later, she was doing ballet from the age of 4 and we thought she had overcome her difficulties. She is now 11 and is quite clearly disabled, with a lot of chronic pain. She is also incontinent and has a tendency to chronic constipation, which also goes with the condition.

Of course this won't happen to most hypermobile children, but if it does- don't let yourselves be fobbed off by people who try to tell you that it can't happen or shouldn't be happening.

we were told not to use armbands as it restricts their arm movement (and so the muscles don't benefit). Dd2 is also absolutely tiny for her age, and so trikes are too big, but the push a long toys have been really good for her leg muscles. We used to make deals with her about walking anywhere or even climbing stairs (eg "if you go up three stairs I'll carry you the rest" or "you can get into your buggy when we've got to the next lamppost") to build up her stamina (the physio told us that the reason dd2 got so tired was because she had to work so hard to make her limbs move)

Thanks so much for the advice - this website is the best! I wonder if it's worth starting a chain where everyone can gather together their advice that they've received in relation to hypertonia and hypermobility from speech therapist, OTs, Physios etc. You're probably a bit further ahead, but a lot of your suggestions are fantastic for us and maybe someone further ahead has good suggestions for you both (though sounds like you're pretty much there! )...

HayleyK - definitely worth keeping an eye on your child, even after he is moving about, albeit that in the vast majority of cases, once the initial gross motor delay has resolved, there aren't any major problems in future.

Because our son at 4 still has issues with his extreme hypermobility and muscle tone, he still sees a paediatrician every 6 months, is still on the physio's books for if/when he gets any pain, has seen a neuromuscular specialist (some exceptionally rare muscle issues can present with hypermobility as a symptom) and is due to see a geneticist.

Thanks so much - will do. From what I understand, and maybe I have it wrong, hypermobile joints and hypotonia are both symptoms and not conditions, but they generally come from a condition, but that many people who have hypotonia never find out what caused it. I think that's right but may well be wrong! So then I guess it makes sense that we need to be very cautious to make sure there aren't other symptoms along the way. So presumably, you're now trying to find out what the reason for the hypotonia/hypermobile joints is at the moment? Wishing you best of luck with the tests, I know they can be really scary.

I think you're spot on, Hayley. Hypermobility can (but doesn't have to) be caused by various connective tissue disorders.

If you find that your child also has unusually stretchy skin, that scars don't heal in the usual way, that local anasthaetics and ordinary painkillers don't work, that she starts developing pain in her joints, that she becomes incontinent- that's the sort of thing that might point to a connective tissue disorder.

If she is hypermobile without problems- then she is just hypermobile.

Hi Lulurose.
Haven't had chance to read all the posts but just want to say I know how stressful this is.
My DD didn't take her first steps until she was 27mnths and didn't walk consistently untilshe was 30mnths. She bum shuffled everywhere, round the park, round the garden,around her nursery, everywhere!
We saw lovely paeds Dr who was very reasurring and didn't feel we needed to do anything.
She had been born with a clubfoot (which doesn't usually delay walking but may have contributed to her balance problems).

The relief when she did finally start walking (and stop bum shuffling) was immense.

She is now 3.4yrs and has nearly caught up with peers (still a bit wobbly when running and still poor balance).

Try and keep the thought in your head that she will walk eventually. Good luck.

scattyspice - Is great to hear such an encouraging post! My little boy just started taking a couple of steps at 23 months, but think it's going to be a bit of a while before he gets moving properly as balance is still very off.

Rubyrioja - am fascinated that your child sleeps in curled up kneeling position with bottom in the air, as my boy does that and I hadn't associated it with the hypermobile joints or his hypertonia - is it linked?!! Very interested to see that we should discourage it - do you know why? I will sneak in when he's sleeping now that I know and uncurl him

The bottom in air position is really common anyway. The risk for hypermobile children with kneeling or bum-sleeping is that they will end up in the sort of overstretched position that normal children simply can't get their joints into, and that this will cause overstrain + there is a risk of dislocation or subluxation (mini-dislocation) if they attempt any sort of party trick.