Late walking - ? hypermobile/EHD

[zzhallk]

Hi there - wondering if anyone has advice re late walking. My daughter is 21 months and still not walking. She only crawled at 18 months and now pulls to stand and cruises round furniture but is nowhere near walking by herself. She is also talking late - only has a few words - but clearly understands everything. She's seen paeds consultant twice who thinks there's nothing wrong (neuro exam normal), but I'm not convinced...she "w" sits, her ankles turn in more than I think is normal, she has v thin skin & visible veins - I'm wondering about hypermobility/Ehlers Danlos etc. I've seen plenty of people whose children are already under physio by her age but the consultant thinks no need. How did people get physio, have you found it beneficial etc...trying not to worry but hard not to when she's so far behind. Thanks for any advice!

hello zz,

Your post stood out because of the ages you mention . My daughter crawled at 18 months and walked at 22 months.

Of course, I can't say if our children have the same issues, but DD saw the consultant at approx 16 months (just sitting) and had physio shortly afterwards.

She has had physio off and on over the last few years and OT. I do think it has helped. The original referral was GP to consultant to physio.

Later on I asked the health visitor and she was able to refer to OT (and physio too or I may have gone back to the GP, can't remember).

DD has low muscle tone, is hypermobile and still defaults to 'w' sitting. She manages fine at school but finds physical stuff a bit more challenging than many others. Running around the playground and playing non competitive games seem fine though.

Fine motor skills eg zipping up, cutting out have been hard for her but she is improving. I was very pleased with the neat work that came home in the jotter today. I was tearing my hair out a bit last year.

So, in short, yes we have found it beneficial, though I know every child is different etc etc. I should say that as far as we know DD's issues are 'just' physical. It was awful at the time though going to toddler groups and she just sat. Never sits down now!

Physio helped hugely with ds1, who has a diagnosis of EDS. He had physio from 15 months until shortly after he was walking (until just over 2). He also had piedro boots, which helped loads, and then after a few years of not having supports and complaining of tired legs all the time, got Sohlis (inserts for normal shoes) to help with his pronating ankles, which again help hugely with normalising the way he runs and jumps - he has much more spring to his step, now, and can walk and run for considerably longer periods of time than before. Also, having lost access to physio when he was 2, we finally got access to more physio from age 6 to 7 and that made a phenomenal difference, as it strengthened areas of muscle weakness (caused by an inability to use particular muscles close to particularly unstable joints), enabling him, finally, to do things like throwing, catching, kicking, and even just doing up his own seatbelt, without giving up and complaining it was painful. He is now in a position where keeping him active doing normal things (eg swimming, cycling, walking, running, etc) should be enough to keep him pretty healthy, whereas before we were left in a totally unacceptable limbo, where he couldn't engage in the things he needed to. I don't think all his problems were purely physical (another child with similar levels of hypermobility would have been able to do considerably more), but that's pretty irrelevant when the same treatment makes such a colossal difference to your child's abilities and self esteem. It makes me VERY CROSS how little "experts" seem to understand about the importance of the quality of your movements, not just the fact that you are moving. They wouldn't be that unkind to a grown up who had had an injury, resulting in inefficient and harmful use of their joints and muscles, but they will happily watch a child develop harmful means of moving around and do nothing about it until the same child complains of pain and fatigue and potentially permanent harm has been done.

Thanks for that- just helps to hear someone else has been through similar; she is getting there (v) slowly but surely but I do think I'll push for physio/OT at our next appointment. Did physio say anything about shoes -- since she doesn't yet walk I've not bought her proper shoes yet - had it in my head it would be better to keep her barefoot indoors but actually maybe boots with ankle support might help?

Hi Rabbitstew - how did they come to the diagnosis of EDS? Just it's not even been considered for dd but I do think she may have some kind of connective tissue prob. Though neither the paeds cons nor a paed rheum friend of ours thought she has hypermobile joints. Something is different though; she "feels" different to hold; not floppy exactly but less of the resistance of other babies/toddlers.... maybe in a way it doesn't really matter and she will just progress at her own speed, that's the impression I got from paeds, but if there's something we could be doing to help then I'd like to know! And I think that may be more likely to come from physios than medics.

They came to a diagnosis of EDS via seeing a neuromuscular specialist and specialist neuromuscular physio, who found isolated areas of significant weakness, which they felt were not due to a problem with the muscles in themselves, particularly since blood tests were normal, but they had seen a similar profile in children subsequently diagnosed with connective tissue disorders. We then saw a geneticist. I don't think they like to go down that path too young, though, on the basis that virtually all very young children have significant hypermobility in comparison to adults. And in any event, the diagnosis was pretty useless in terms of getting help - it didn't improve our priority for seeing the physio at all, it seemed.

Ds1 felt very different to ds2 - sort of doughy in comparison, and he wouldn't provide much resistance if you picked him up under the armpits (still complains if you do it, as it pulls his shoulders out of joint!). Children with low muscle tone (hypotonia) feel like that, too, and that is more often caused by the way their central nervous system works, not their connective tissue. Some people have lower tone than others - there is a range of what is acceptable, and some children with apparently low tone in infanthood appear to improve a bit as they get older. So, at your dd's age, you have no hope whatsoever of getting an EDS diagnosis unless it is already known to run in the family or is one of the types that there is a genetic test for (and it runs in the family....), or is causing your dd to dislocate her joints frequently - you are more or less obliged just to react to the symptoms and ask for help on that basis alone. As time goes on, it will become more apparent whether she also has, eg, difficulties with co-ordination, or is getting pain in her joints... which is more likely to be the case if you do as told and wait and see, than if you try to push for physio now, which is going to help even if your dd doesn't actually "need" help. The problem you are up against on the NHS, of course, is that they are overstretched and will prioritise children with the most severe conditions and the least chance of gaining independence without long term, intensive help, rather than children who could be helped now and then get out of the system altogether.

ps re shoes, the piedro boots definitely helped speed up ds's learning to walk. Basically, it is desirable for a child to walk around at home in bare feet, because it can strengthen the ankles, etc, but if they are so hypermobile/low toned in the ankle joints that their ankles pronate severely, then walking around without shoes will not strengthen the ankles so much as make the pronation worse and the child incredibly unstable on its feet. In that case, it is better to enable them to learn to walk and start building up all their other muscles by walking in supportive boots before you start working on trying to build up the strength in their ankles so that they don't have to spend a lifetime wearing ankle boots or orthotics.

Thanks so much for that--- we'll just have to wait and see then I guess. I realised that a diagnosis prob wouldn't change anything practically speaking, just can't help wanting to know if "something's wrong". Her ankles turn in a bit but not too much so I think I'll wait til we see a physio for some advice on shoes.

My DD has low muscle tone and hypermobile joints - particularly knees, hips, fingers and ankles. We found physio very helpful in the early days - particularly getting her crawling (15 months) and walking (20 months).

Agree totally with rabbitstew about not getting into the 'bad' habits and preventing movement which may cause problems later on and that is why physio - if offered longer term can be beneficial.

DD has got away with wearing normal shoes but I am very fussy about support and won't be fobbed off by sales assistants who are clearly not spending the time fitting her properly! Clarks shoes aren't great for ankle support (especially for girls as fashion seems more important to them ) and IME, John Lewis are very good at fitting if you have one nearby? I found Babybotte shoes although expensive were good for DD when she was the same age as your DD www.google.co.uk/search?q=babybotte&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#q=babybotte&hl=en&client=firefox-a&hs=q2n&rls=org.mozilla:en-US:official&prmd=imvns&source=univ&tbm=shop&tbo=u&sa=X&ei=mGEVT4aJIIy5hAeL2JjgCA&ved=0CIYBEK0E&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=4890bcd152f2313c&biw=1280&bih=633

sorry haven't read all threads in detail since my last post.

re shoes, we didn't bother other than for warmth (leather baby shoes) and crawling on slippery floors. However, that's not to say that was right! Once she walked we did get ankle boots which did seem to help with supporting her, but I vaguely remember someone else saying to be careful not to let her become reliant on the support??

DD now wears insoles from the podiatrist as she turns her knees in a bit. They do seem to have helped.

We have never bought fashion shoes for her, always properly fitted, though she has never been 'prescribed' footwear.

We always noticed her hands never seemed to have much solidity to them e.g. when holding her hand.

We have got plenty of help I feel from the NHS (though paid for the initial consult with specialist to get the ball rolling). However, we always asked for it, late sitting etc did not trigger any referrals until we asked for them. We have learned that sometimes if you don't ask, you don't get! Felt initally a bit pushy though.

PS - so far no complaints of joint pain ever, though still quite young.

My DS3 started walking at 22 months - he had been crawling from 14 months but also "w" sits, ankles seem a bit floppy. He saw a consultant a bit earlier for another reason but he didn't find any neuro problems, GP watched him walk at 2 when he was pretty wobbly, but in the 2 months since he has improved massively.

Still doesn't run or jump like some 2 yo but then I figure that's no surprise when he started so late.

He is also a late talker but it has all started coming out in the last 3 weeks.

He's my third and DS2 was also a late walker and talker (and has dyspraxia as it happens) so I was quite laid back about it. If you are not convinced then don't leave it, but just wanted to point out that your daughter might still do all of this with no help at all over the next couple of months. I know how hard it is waiting though, I often wondered if DS3 would ever let go of the furniture.