DC with hypermobile ankles, what age did they walk?

[WeeLors]

Just wondering really!!
My DS is 20mths old and still not walking independently. The reason for it seems to be his super bendy ankles, he finds it really tough to balance without holding on (they roll inwards when he stands so that he's on the insides of his feet - the right is only slight but the left is quite severe imo) . He has been to see a specialist but she seems reluctant to treat him until he's walking by himself. Tbh, I got the impression she was a "just let it correct itself" type and I know it may well do that once his ankles strengthen up but I'm worried about the long-term implications of that. I have hypermobility (only just realised thats what it is now DS has it) and it was left to "correct itself " when I was a toddler - I now often suffer from sore ankles, shin splints, hip clicking and back pain (due to my ankle joint not being in the ideal position as I grew imo). Anyway, thats another story....

Back to the point!! He's been crawling (like a rocket) since he was 8mths old and pulling up/cruising since he was 11mths old so its definitely causing a stability issue rather than preventing him from bearing weight IYKWIM. Only in the past month has he taken our hands to walk (he used to crumple to the floor anytime we tried to prise him away from the furniture) and in the last week or so he'll take a couple of very very wobbly steps between me and DP (but it's more like launching himself at us before falling over ). He won't stand without holding on yet though.

We're pretty laid back about him taking his time to walk now we know there's nothing seriously wrong with his feet/ankles but its taken a long time for him to get from pulling himself up to now. Just wondered if I should be getting excited about him maybe walking himself soon? What age were other DC with hypermobility when they walked?

What kind of specialist did you see? And how long ago?

DD was 22mths. She is hypermobile in knees, hips and ankles.

She had 9mths of physio once she was walking....

i don't think it will be very long now for him, within the next 2 months I'd say.

my dd was 2 months off her 2nd birthday. She didn't even crawl till she was about 16 months! Never rolled over either, so I could just leave her and never be worried she'd move!

Dd is 9 now. She used to walk on the insides of her feet but that's corrected itself as she's strengthened esp over the past 3 yrs. She does toe in when she walks tho, esp on her right foot, and her hip used to click alot and give her pain. She had 2 months of severe pain last year when she had a huge growth spurt. I pray that never happens again.

DTD2 was 16 months - and she's "extremely" hypermobile in most joints. DTD1 (they are identical) is less hypermobile (although still definitely hypermobile, just less so than her twin) walked 3 months previously. They crawled within a week or so of each other. She is still dealing with the hypermobility now (22 months) in that she frequently falls for no reason whereas her sister doesn't - this is apparently due to the hypermobility. All I can say is she has improved a hundred fold since she has been walking - the difference is huge. They have also said they won't 'treat' it, combined with hypotonia as she seems to be improving so much by herself. They did explain it's why she gets so tired though and physio might be worth while in the future. I know it's hard but I'd try not to worry.

Blu - we saw an orthopaedic specialist after referral from our gp back in July. At that point he wouldn't stand up for you if you asked him (would refuse to put his feet down when you lifted him to stand). He would also stand on his tip toes a lot when he was standing/cruising as I think he felt more stable that way. Anyway, he wouldn't stand for her so she tempted him to pull himself up against a bed. He stood on his tip toes for about 20secs, then moved flat onto his feet for a mere split second before going down onto his knees (his left foot, the most severly affected, barely made contact with the floor before he dropped down). Based on this she just told us that he'd walk eventually and she'd check him again in 4mths, then she breezed back out of the door again. She did confirm that he had very lax ankle joints from examining him though. Needless to say DP and I were left a bit dissatisfied with the consultation (at that time I didn't know much about it though so didn't know the right questions to ask IYKWIM). Its only been through internet research that I've found out that taking DS swimming etc and getting a sturdy pair of ankle boots would help (they have, he stood flat on his feet for the first time once we put a bit of ankle support on him).

Good to hear from other posters that it might not be long now. We've noticed a wee change in him over the last month in that he really seems to be trying now whereas he didn't seem bothered previously. I think he's starting to notice that all of the other kids his age are running around. He's really tall (i.e. looks older than he is) so he looks so strange crawling around at toddler groups while children half his size are tottering past him.

P.S Apologies for ultra long posts, I've never been the most concise

Hi. Having read your initial post I'm really shocked that your DS has not received treatment in any form at all. I personally would be demanding a second opinion from a physio/paediatrician.

My DD is now 2yrs 9months old. She was diagnosed as being hypermobile in all joints at 23 months by community paediatrician. At this point she was still unable to stand at all due to the severity of the condition in her ankles which turned inwards at horrifying angles when people tried to get her to stand. DD was initially fitted with reinforced ankle boots (physiotherapist) which enabled her to learn to stand but did not help at all with walking (DD hyperflexed her knees and then locked her hips as still too unbalanced).

DD was fitted in mid July with splints (far prettier than I thought they'd be) and can now cruise and has taken up to 10 steps unaided. We are still on target to walk by 3 years. We attend physio every 3/4 weeks to check progress. DD turns right leg/foot inwards alot due to the muscles being weak. We've been told this should correct itself in time and that swimming will be very beneficial for her (not possible at mo as I'm 37 wks preg).

Sorry for length of post!!! Do check your Ds's posture as he stands in the boots. Hopefully they'll be all the support he'll need. If he still looks uncomfortable I think you need a second opinion. Appalling behaviour from the "specialist" in my humble opinion. Hope this post isn't too preachy, not ment to be!!!!! We've been on long road for what seems forever trying to get DD walking and as they get older and are still not walking they definitely start to miss out on stuff their peers do. Good luck :)

Ask about Piedro boots..
They are supplied by physio/orthopaedics and are fab.. support hypermobile ankled brilliantly but are a well kept secret because of the cost to the NHS (about £100 a pair!)
My son was hypermobile.. had boots from 14m walked at 2.5 but went into splints eventually as he was very unsteady and his muscles were so low tone he was a jelly!
Unfortunately you have to be quite 'pushy' to get help these days but it's worth it.
My son sort of switched from floppy to stiff in his achilles and hamstrings and has now been wearing splints for years (he's a teen now) and his feet are shockingly deformed because they collapsed ..but they would have been way worse without boots/splints.

However he gets around quite cheerfully even if he does look a bit 'Forest Gump-ish' on the move:)

Seaweed - You're not being preachy at all!! We were a bit shocked ourselves after the first appointment because at that time he wasn't making any progress at all and only got on his feet when he had to. As I say, at the time I didn't know much about it so I didn't really question what the ortho said. She just seemed quite flippant in a "oh another set of parents worried cos their pfb isn't walking yet" kinda way but she barely saw him stand up, and cos he didn't put his full weight on the left foot she didn't see how severely his ankle was pronating. We're due to see her again in a month and I'll definately be a bit more equipped to deal with her attitude then. I actually wonder if its common in this area not to treat until walking unless its really necessary. I was speaking briefly to a woman I know a few months ago who's son has AS and hypermobility and her words were "they'll sort him out once he's walking". Luckily, the ankle boots we bought him seem to have helped immensly (sp?). His posture is fine in them and he seems pretty comfy. Since we realised it was up to us to be proactive he has improved no end but I reckon he will be very unstable without the proper support even once he does start walking. I'll certainly be a bit more assertive at his next appointment.

Medusa - Think thats my problem, I'm not pushy enough . I'll definately ask about Piedro boots at his next appointment, I have read about them since the last appointment and they sound just what he needs.

weelors,

its very hard when u see these specialists, have been in your type situation a few times. Tho, they were adamanat that she was to have no interventio until walking started and progressed. She had pronated flat feet, and to a degree still does but her feet aren't totally flat, and she has an arch when on tip toes.

my dd doesn't have hypermobility to the extent of your little one, but you do expect some 'ADVICE' don't you when you go to see these people. As you say, you have researched the shoe situation, and gone for that and it's help. I guess we just have to be proactive, but you wonder when you do things off your own back, 'am i doing the right thing'

IME i have been told it's 'up to me' whether I have bothered with special shoes, which is incredibly crap because you feel like why are you asking me!!!

I have just had the exact convo about dd's tonsills, whether or not to see ent specialist!

Standard NHS policy appears to be to deal with the chronic pain later on, rather than the initial problem, because you never know, maybe the pain won't be too bad. Doctors also don't appear to be aware that school starts when a child is only 4 years old and a child still "growing out of" problems at school that they would have got over years before if they'd had appropriate intervention then, is unfair on the parents, the schools and the child's self esteem, not to mention not good for the child's general development... but that's the view of a parent whose child quite clearly wasn't going to have got over his problems without intervention, had hypermobility in every joint and consequent muscle weakness, but who still had to fight very hard to get any sort of meaningful intervention started. Mind you, I don't think many physios and doctors have a huge degree of understanding of the possible effects of hypermobility or even of its causes - and most will admit to that.

pirate - yep, I don't think they're going to do anything until he's walking. I just hope he's nearly there at the next appointment so they can see how he walks on the more severly affected foot. When he's not wearing shoes he kinda waddles like a penguin, almost dragging or shuffling the left foot forward (hard to explain) but in shoes he lifts his feet properly so think proper support shoes would help him loads - the sooner the better.

rabbitstew - you're right. I think doctors see patients in terms of what they learned in textbooks rather than thinking about each case individually and the benefits of nipping something in the bud early. The NHS very much has the doctrine of treat the symptoms rather than the cause - since he's got no pain just now and will walk eventually without intervention then they won't do anything but they don't think that down the line it could start causing him problems or chronic pain. Even just the fact that he might not be able to keep up with his peers physically due to tiredness if his joints are having to work harder concerns me.

I think that doctors need to watch their backs now though. There is so much information on the internet and forums like MN nowadays that people are going to stop being fobbed off taking their word as law and actually demand what they know their DC needs (ooh I felt quite empowered there )

Reading all these posts I am so thankful for all the help we have received with DD's mobility. Maybe we were "lucky" that she still was unable to stand at 23 months and that's why help has been provided. The paediatrician has also given us some pointers as to problems that DD might encounter as she goes through school. However I should add DD is also developmentally delayed, which didn't get us access to community paediatrician (as we hadn't realised that we should be worried about that!) but is certainly enabling us to stay in regular contact with him and thereby access the help we need.

DD2 is hypermobile but prob not quite as severe as your DS. She crawled at 13 months, rolled and cruised at 14 months and at just 16 months now has taken a couple of steps in the last 2 weeks but as she is falling lots, I think she is losing her confidence a little bit and is trying to walk less and less.

We have being seeing a physio (referred) since 11 months as she was such an unhappy baby since 8 months at not being able to move. Our physio has been really good and is just really checking on her progress every month and also suggesting exercises to help with things. I'm taking her back on Monday as the physio asked to see her when she was cruising well to check the position of her feet to see if she may need piedro boots to support her ankles so will be interesting as to what the outcome is.

Can you request a referral to a physio through your hv, I wonder if you may get a different outcome?

My three children have differing degrees of Hyper Mobility Syndrome, DD1 walked at 18 months, DD2 at 10 months and DS at 18 months but only with the help of Piedro orthopaedic boots. He couldn't walk without them on, as his ankles needed the support, and even with them he didn't walk independently until 2 years old. They are now all wearing orthopaedic boots and DD1 and DS also have orthotic inserts to put their feet into the correct position.

I had to fight for Orthopaedic boots (as well as everything else ) but the boots make such a difference...the kids wear them all day, every day, even indoors, as without them they have lots of pain....ankle, foot, knee, hip and back, and fall over more. Also, there are really great styles and colours, and the children get to pick their own from a selection of catalogues which means they don't have to have the same styles as each other!

It sounds like I really need to push for Piedro boots then. He's ok in normal sturdy ankle boots (in that they hold his feet in a better position) but he still stumbles a lot and is quite unsteady so obviously he isn't getting enough support from them.

PorridgeBrain - The last time I spoke to the hv she just seemed satisfied that we were in the system with the orthopeadic specialist so didn't take it any further. Maybe I should talk to her again though cos I think some kind of physio would be a good idea

my ds has hypermobility syndrome ( now aged 3 1/2) we are in australia , he has seen the developmental physio once but the feeling here is that the delay in mobilisng protects them longer and prevents potential joint damage. Ds was over 2 before he walked and still runs like an un co ordinated deer! He does trip and fall often and has little paracute reflex so falls flat down.. yet he is doing good! One thing is for sure most kids out grow HMJ and will develop normally ..

Hi WeeLors, just to give you an update. Saw physio and she is ordering piedro boots for dd2. Says she will get there without them but this should help her get there quicker

22 months for ds. Lots of physio once he was walking - about 18 months worth. Now 7 and wears orthotic insoles. He'll have to wear them until he stops growing apparently. Physio advised that we should make sure ds does loads of exercise to ensure his muscles are strong. He's gone from being the slowest runner at nursery aged 4 (and falling over a lot) to one of the fastest runners in his year. Still has joint problems but is very strong. We were told that he would never play contact sports because of his joints.

Thats great porridgebrain, hopefully she'll take off now she's getting the boots. I'm going to wait until I see the specialist again cos it should be within the next month (though not had an appointment through yet) and if she's still doesn't want to do anything I'll see the hv about being referred for physio. He's definately heading in the right direction in terms of progress but its painfully slow and he's starting to get frustrated.

Chloeb - I definately would see the merit in delaying mobility to protect the joints but he is mobile (just not indepentently mobile) so he's putting stress on his joints already while he's walking about the furniture and I worry about his ankles being so pronated while he's doing it. I do hope he is one of the kids that outgrows it, he's a very typical boy (likes a bit of rough and tumble) so I would hate it to hold him back when he's older

MollieO - yep, we're trying to get him as much exercise as poss by taking him swimming/to soft play etc so hopefully that will help strengthen him up. He's so chuffed with himself whenever he takes the slightest step that I can't wait to see his face when he finally takes off (proud mummy moment)

hi please can someone help me: my daughter is nearly 16 months old and still not walking independtly she will furniture cruise and walk with a walker but wont walk on her own. physio say shes fine but is too flexible so probably wont walk for another 6-8 months her left foot almost bends to her leg and when she stands on it she rolls it in slightly is this hypermobility? am i being fobbed off by them?