Almost 4 year old can't walk.

[MammaKel]

Hi all,

Sorry to post in aibu but I'm desperate and don't get many responses from SN children so hoping someone may have a suggestion as I've always found mn helpful.

My son has a genetic condition that causes development delays and mild intellectual disability. He's also been dignosed with ASD, GDD and hypermobility.

He is almost 4 years old, he is massive both tall and heavy (but not fat). He's in size 5 to 6 clothes and slowly creeping towards 6 to 7.

He's also limited verbal.

That's the background so the problem is he can't walk, he walks around on his knees. He can't stand independently, everytime we try his legs buckle beneath him and he falls.

He can stand with support holding onto the wall, or the sofa and can cruise. It's been like that for the last 18 months, he hasn't progressed any further than that.

Professionals keep saying he'll walk in his own time and that's it, they can't offer further support because there's no physical reason he isn't walking.

Today at a CDC group a member of staff has raised concerns about his ankle strength and we need to get him walking (like we haven't been trying to?!)

He has weekly swimming lessons and a walker at nursery (although he refuses this mostly and will become extremely distressed if they try and encourage him to use it). He also attends weekly physiotherapy (the CDC group) but all they say is he'll walk in his own time.

I'm at a loss, I genuinely don't know what to do and was wondering if anyone out there had any advice.

Thank you

Has the physio suggested AFOs/splints or boots at all?

Hi @MammaKel
My daughter didn't walk until she was 3.5 and was very much a 'knee walker'... She was also in the 110% percentile for height and is hyper mobile also, but no genetic conditions or other potential additional needs. We were referred to physio by our local health visitor team, and she was with that physio team until a few years ago (she's now 10). When she did walk, she was fitted for special insoles in her shoes to help her with ankle strength and they made a big difference.

I send lots of sympathy to you - I found it very hard watching other children tear around the place having fun (some under 1!), whilst she was shuffling after them trying to catch up. I was desperate for her to walk, whilst well-meaning friends were 'you're so lucky - you can chill out with your cup of tea at toddler group'....

I would push for some extra help - yes, of course he will walk in his own time but surely there's no harm in some professional help. I'm sure the swimming is helping lots - that's great... Just to try and reassure you, my daughter has no lasting effects from her late walking and doesn't need to wear insoles now - she'll always be very bendy, but plays for a local football team and loves her sport. Best of luck x

They haven't.

We had an appointment with orthopaedics and they said he doesn't need anything like that and they suspect he isn't walking due to (at the time) suspected ASD (he's now been dignosed) and that team would be better helping us but they don't have any answers either.

Not an expert.

I had an accident and had to relearn how to walk.

Can he walk in a swimming pool? Ie without his own weight?

If so then you may be able to use the programme that I did which was basically practising walking and movements that helped with walking in a swimming pool with a physio who specialised in hydro.

Not NHS.

Then I progressed to slowly doing the walking in shallower and shallower pools, which helped with how far I could walk outside the water.

@AlexTheBird Thank you for sharing.

It's nice knowing I'm not alone because it can feel very isolating especially like you say it seems everyone else's child is walking and mine just seems stuck.

My two year old daughter (who also has suspected ASD but not the genetic condition) was really delayed as a baby but started walking at 20 months old so although she was a bit late, she walks absolutely fine (apart from being a bit clumsy) and I just can't help but think well if she can, why can't my son but I appreciate all children are different but it's just a bit frustrating.

I'm glad your daughters doing well! It gives me hope that one day this will just be a distant memory and he'll be running around like a lunatic haha

Thank you again x

@Octavia64 I'm sorry to hear about your accident but thank you for your suggestion.

I'll mention it at his swimming lessons to see if its something we can try and I'll mention it to his team to see if its something that'll help.

Thank you

My now 16 year old was very similar to yours in terms of development, although he was younger when he walked (took first steps aged 2 years 9 months). He struggled a lot with weight bearing and he had supportive boots and also splints on his legs which helped. He wouldn't use his walker at first so we said that his older brother could use it, which made him want it back!

@eelliejjtiny ooo that's an idea! He hates the thought of his sister having anything so that just might work haha

I'll talk again to his team about aids, at the moment I just feel a bit dismissed as they keep saying there's nothing wrong with him and he'll walk in his own time which I appreciate but we've had no progress in 18 months and we're at a bit of a stalemate and I think we need to look at something else.

I have no suggestions for you, OP. But this sounds very difficult, and I am sorry you are going through it. Very best wishes to you both

My DD is like this too.

She is ten, has ASD, GDD, hypermobility, a profound learning disibility, non verbal, in nappies etc.

She still knee walks but after two, three month stints with her legs in plaster casts (aged 7 and 8) and custom made AFO's she is now able to stand and walk (albeit unsteadily) for a few minutes.

She is mainly in a wheelchair and needs to be lifted into seats or changing tables etc.

They never could find out what caused it but think it's the combination of the learning disability with hypermobility and low muscle tone.

I'm not sure if she'll ever be able to walk for more than a few minutes but never say never ☺️

Best of luck

@WeirdBarbieKenergy It's difficult isn't it, can I ask if you don't mind, did they say to you that she'll walk in her own time when she was younger or was it just unknown?

She actually couldn't put her foot flat on the floor (hence the casts to slowly stretch her calf muscle to enable her to flatten her foot) so they knew they needed to sort that out first.

After that though they were hopeful for a little while but then as time went on they told us that the chances of it happening now is very slim.

We were told at her last consultation that if she does manage to walk for longer than a few minutes it will most likely never be unaided (walker etc) and she will always need her AFO's.

It is good that they think your son will get to it in his own time, but do keep asking for investigation just in case he needs some extra help (AFO's are especially helpful)

Wishing you the best of luck 🤞

My twins were late walkers & knee walkers diagnosed with hypermobile ankles. They said they needed ankle support but when I asked what would be provided they said nothing buy them boots from Clarks. So you may have tried just off the shelf boots but if not give it a go. They walked right away ( they were youger just 2).

Sorry I just managed to write a sentence then I was needed!

I'm using they/them to keep my child anonymous as they are now an adult.

I've been there. My DC was almost 3 when they walked but could only walk for a few minutes and they fell a lot. My DC has complex needs and has numerous diagnoses including hypermobility and GDD. They were fitted with boots but that made them fall even more so they were fitted with AFOs which helped. They had a special needs buggy (maclaren major elite) and got their first wheelchair at 5 years old but I encouraged them to walk when they could while I pushed the wheelchair beside them.

It's encouraging that they are saying that your child will walk in their own time but I get your helplessness with the situation and that you just want answers. I wonder if hydrotherapy would be helpful if this isn't something that is being done currently?

I don't know if this would overlap too much with his physio group but could you look at a private physio assessment? Especially if he gets DLA.

Most of my son's DLA goes on private medical help that is just not available on the NHS.

Hi,

Im a psyc and work in a child development service and I’m wondering if the physio have confirmed that this is a psychological issue rather than physical issue?

as in, your child is not walking yet because they are choosing not / it feels too hard to them vs because physically or developmentally they are not there yet?

if this were where I work you would be referred to see a Psychologist alongside the physio to make sense of why they aren’t walking and how you can encourage your LO to start walking in the absence of any physical reason. If it was considered to be psychological you’d be doing an intervention in my team.

Personally I think it sounds as though they aren’t considering the need for psychological perspective on this because your child is still relatively young, but if they were 10 you’d be straight under psychology because they ‘should’ be walking. I’d ask the physio directly why they haven’t referred for this. Presumably it is impacting on your LOs opportunities to connect to other children and in accessing leisure activities.

A friends DC walked on knees.

Later diagnosed ASD. Walks normally later on, think there was some physio etc.

I have nothing to add ,my son iis severely disabled but has no mobility. Problems ,
Does your child receive HRM DLA because if they can't walk atcall by three they should be entitled to it

I have no suggestions but it must be difficult. I had an accident and i severely injured my right leg. I strongly favour my right leg too. When i tried leading with my left leg i would just freeze. One thing that i will say is that i found it really difficult to use my walker. Yes i could go forwards with my walker but i could not turn so that i could get in to another room. I was also completely failed by my physio.

I was thinking this and that it's become a habit not to walk.

Walking in the pool seems like a great idea makes walking easier and more enjoyable and may help break the, 'walking is too hard, I don't want to walk, I can't walk' thinking.

I just wanted to update this thread as we saw the physio today.

She ignored all of my suggestions mentioned on this thread, said he absolutely can walk and just doesn't want to, it's purely sensory and we have to be cruel to be kind and put him in his walker whilst he screams and cries which I'm not really comfortable with but I guess needs a must.

Can you get some private sessions with a paediatric physio? You will probably find them more amenable than NHS ones.

If you can't afford that and truly having no luck with NHS HCP, I might possibly contact a local dance school. If it's an ankle strength issue they will be able to suggest particular exercises for foot and ankle strength they might decline due to is conditions and not wanting to make things worse though.

Is his walker something he sits in or a frame he can push?

I'm just looking through private clinics now because I don't feel confident with the advice we've been given.

It's a standing frame, he gets strapped into it and it makes him stand up.

Definitely get a second opinion.

You have mentioned many reasons why he may not be walking. Hypermobility may mean he feels wobbly or unstable, or is in pain when walking. Knee walking may have caused some muscles to over develop and others to weaken, and tendons to tighten.

ASD - it may be a sensory thing. Maybe he doesn’t like being up higher. Could also be inner ear? Maybe it makes him feel dizzy?

He may have a genetic condition such as Ehlers Danlos which causes hypermobility due to faulty collagen. In this case, the hypermobility is a symptom, and the faulty collagen impacts on the whole body.

How about a balance bike or trike to get him used to pushing along with his feet and straightening his legs? Give him some independence?

I am sorry you are being dismissed, frankly the physio sounds cruel.

Re the walker at nursery, I wonder if there was some incident with it that alarmed or scared him, and if that feeling has stuck. Maybe a different colour walker, perhaps with a few shiny/fuzzy stickers on the handle (or textures he likes/finds attractive at least) would encourage him to use it. A similar approach at home might help too.