Idiopathic toe walking

[MrsJamin]

Ds (8) has always walked on his tip toes. He's got a leg length discrepancy of about 1cm. Does anyone else have a child with these problems? What options have you taken and what have you found helps your child work properly?

[reup]

My son did this though his legs are the same length. We did serial casting which was hard work. It has helped but he will still tip toe - especially in socks or bare feet. We try to keep up with the Physio so his hamstrings don't contract.

[MrsJamin]

Thanks for replying to my message. Do you get him to do regular exercises? Does he enjoy it? I massage DS's calves most mornings as they get very tight and it does seem to help. Was your son ever assessed for any neurological base for his tip toe walking? I thought they had rejected that hypothesis years ago but the new orthopaedic doctor has suggested an MRI to make sure which has thrown us a little.

[reup]

No - we were never offered anything like that. I thinks it's genetic as my brother did it ((had his Achilles' tendons cut to stop it - has huge scars - no key hole surgery in the 70s) and my nephew to a lesser extent.

We did years of regular Physio - appointments and exercises at home and foam/plastic splints to wear - he could never wear them overnight though as he felt too uncomfortable. I felt like a constant nagging at him to do them. ( and I still do) Then when he was 10 he had the serial casting and then regular Physio and exercises. The serial casting was great and he coped pretty well but there were lots of appointments and he had both legs in casts for 3 weeks- changed weekly. He's 13 now and I think they are going to sign him off at his next appointment in December. I try to keep him doing a couple of exercises twice a day so his hamstrings stay long. It's harder cos he is growing a lot too.

Re - the neurology thing - he always had problems with handwriting and spelling. He had lots of investigations as to why - lots of OT as he has quite weak arms,. Then eventually we got him assessed for dyslexia and he has it - a really poor working memory but very high scores in other areas. Weirdly a friend's son also had serial casting and has handwriting problems too. So maybe there is a link.

[flutterby77]

Is the tiptoe walking with both feet or just one? The leg length discrepancy could be relevant. My daughter tiptoed but with one foot only. She had a leg length discrepancy and it turned out to be hip dysplasia and she was compensating.

[wifeofdoom]

My dd does this - she had night splints that made a huge difference. They tried stopping them for three months when she grew out of the splints and just doing stretches and it came back, so back to the night splints now.

[MrsJamin]

So appreciate hearing from other people who have been in the same position. He's on tip toes on both feet but his left heel is higher up. They've never suggested night splints, what are they made from? Are they painful or itchy? I don't think there's anything wrong with his hips but he was breech if that's connected?
Regarding neurology, it doesn't seem likely to us. He doesn't have any other problems, TBH he aces school, very good handwriting, reading. Seems weird they would choose to do an expensive procedure for no reason though. Have your dcs grown out of tip toe walking as they got older? Terrifies me that he'll walk like that as a grown man, he looks like he's got invisible 4 inch stilettos :(

[ChilliMum]

Hi all, I am rather shamelessly place marking as my ds (5) does this too. It's definitely an inherited thing as I did it, my dd and dn but we all grew out of.
Ds shows no signs of stopping though, he is having physio but I am not sure it is making any difference and I too worry he'll be doing it when he is 18 😕.
Really interested in anything people have done which has helped.

[MrsJamin]

No need to shamelessly place mark, would like an ongoing thread with other parents about this stuff. Has your 5 year old had casts to stretch his ankles? Do you have any luck reminding him to put his heels down?

[ChilliMum]

Hi, thanks it's nice to be able to talk to people who know something about it. We have started to get a few comments now and people asking about it so between that and the physio I think he his starting to feel self consious which makes me sad.
No casts just physio so far and the constant reminding but he takes a few steps normally and then reverts to his toes so I don't think it makes any difference.
I feel a bit like we are banging our heads on a brick wall right now.

[reup]

I've spent the last 8 years says "heels" to my son. By the time I pronounce the s he's tiptoeing again! He's going on a school ski trip soon and I think it's worth the money to spend 5 days in heavy boots!

The splints are made from foam and plastic. My son couldn't bear them at night but used to sometime wear them sitting on the floor with his back to a sofa. But then he would slouch and his feet would splay out so most of the stretching effect was gone. His hamstrings got so short that serial casting was really the only way he could stretch them out again.

[sleepy16]

My son is nearly 10 and he still tip toe walks, he tried the casting and it never made any effect on him.
My son is autistic and has hypotonia and dcd though so for him it is a sensory and balance thing.
Our consultant did say that some children tip toe walking through habit.
I also have a leg discrepancy (quite a difference) and I tip toed on the other side until I had raised shoe.
Had a op when I stopped growing to remove bone so both are almost equal.

[MrsJamin]

Reup totally know what you mean! We've been saying "tiptoes!" for 6 years to no avail. The massage I've been doing on his calves in the morning does make a difference, but he has no muscle memory of walking on his heels so as soon as he's not thinking about it again he springs back up. He does get questions from kids at school and it does wear him down. It all feels a bit futile doesn't it?

[UnderTheGreenwoodTree]

Yes, my DS, now 14, was/is an idiopathic toe walker. He had serial casting at 4, and intense physio, because the tendons had shortened and needed to be stretched to enable him to stand on flat feet. It was generally successful, in that he re-learned how to walk properly, but even now he has a tendency to go up on tiptoes. We still do find ourselves reminding him, but he is generally ok.

[reup]

That's why we went down the serial casting route. It's not perfect but in shoes he walks normally for most of the time. None of his friends ever noticed though!

[UnderTheGreenwoodTree]

OP, has he had any actual medical assessment? Just to expand on my pp, we had a HV referral when he was 3yrs old - and then we had physio first - which was unsuccessful because his tendons were so tight that he literally couldn't put his heels down to the floor (they had tightened because of persistent toe walking).

We then used private health insurance via a GP referral (because DH has it through his work) - but the same treatment would have been available on the NHS. We just got it done quickly, because we wanted the casts off before he started school. This was 10yrs ago - so treatment may have moved on a bit since then.

The casts stretch the tendons over about 8 weeks - he could walk, run, climb in the casts, and had 'cast shoes' which were fine. Once the casts came off, he had difficulty walking afterwards. His feet were kind of floppy, he had to re-learn. We had another course of physio, where he did stuff like walking on his heels, or 'penguin walking' to re-train his muscles. A couple of weeks of this - and he was walking well.

He was a habitual toe walker though - so did have to be reminded not to walk on tiptoe regularly. But I was actually watching him today, after reading this thread - and his walking is good - he puts his heels down, but he has quite a bouncy walk iyswim. I am very pleased we went with the casts.

There was no physical or neurological cause to his toe-walking. It was purely a habit.

[MrsJamin]

UnderTheGreenwoodTree I wrote several more comments detailing the medical interventions he's had so far and what they are suggesting to do next, if you have a read.
By serial casting, do you mean several casts for a few weeks at a time? He used to have two lots of two weeks in casts every 6 months, but the effect it had was always pretty minimal. They've never suggested splints, I'm not sure why.

[UnderTheGreenwoodTree]

Sorry - don't know how I missed that.

Serial casts - yes, the cast was changed (I think) bi-weekly for a total of 8 weeks. Each time they stretched it a little more. It was all done in one go for us, over 8 weeks.

We were never offered splints either.

[MrsJamin]

We're going to be doing 2x2weeks,i wonder whether we should be doing it for longer now to have a better effect. It does seem to cause the muscles in his legs to thin though.

[reup]

My sons and a friend son had it done recently at Chelsea and Westminster hospital. They do both legs for not more than 3 weeks now. The cast was changed weekly. After 3 weeks he could walk normally. He had to stay off his feet for 24 hours after each casting and had a wheelchair but could walk normally after that, go to school etc.

It's interesting how everywhere does it differently. Another friend of a friend each leg in turn.

[MrsJamin]

It is weird that everyone does it differently! Ds has never been told not to walk on his casts even getting to the car from the plaster room. It's frustrating that everywhere does it differently, patently obvious that no one knows how to do it to get the best results!

[reup]

Manoeuvring a tall 10 year old from wheelchair to car both ends wasn't much fun for my back!

[MrsJamin]

Wow I bet. I don't recall ever having to carry Ds. Not looking forward to a return to the crappy velcro shoes though. They kept slipping off.

[CaurnieBred]

DD does this. She has been learning ballet since the age of 3 and I have insisted she keep it up even when she went thru a period of not liking it. I believe this has helped prevent her Achilles from shortening as she had to put her feet down flat for that.

However now she is almost 12 she had been complaining of her calves hurting, especially when walking uphill. We got referred to physio through my work private healthcare. He says that she is hypermobile and learned to walk on her toes due to not having the required rigidity in her ankles!. So she is now on a regime of stretches.

[Cluesue]

My Dd1 did this from when she started walking at 13 months,mentioned it to health visitor,told it was a phase,just keep telling her to put her foot down and walk properly,nagged her to no avail.
Started taking her to gp with concerns by age 2,same response,it's a phase ,keep reiterating she must walk properly but no amount of scolding nagging Mae a difference.
Spent the next 2 years constantly taking her back to gp and dd getting progressively higher on her toes.
Finally referred for physio at 4,spent 3 years doing physio with no significant progress,then spent another year doing scans,Mir etc to rule out cystic fibrosis although there were absolutely no other pointers.
Casting was useless as physically couldn't get her feet in a good enough position.
Finally at age 8 she had an operation where they cut and lengthened her tendons,in wheelchair with double casts for 6 weeks,then in splints for 3 months in day and 9 months at night,continuing physio and insoles in shoes because she actually ended up flatfooted.she is now 10 and basically had had enough,which has wrecked our relationship because of the constant arguments because she now refused to do the physio she needs to build her core balance and wear the insoles.
I hate to seem all soon and gloom but if your bus Trudy is anything like ours you have to push push push to get anywhere.

[Cluesue]

Nhs trust not bus Trudy