Anyone who knows feet and hyper mobility (not fetish!)

[Bluescissorsbluepen]

Hi
ds had an appointment with orthotics yesterday as I felt he had always walked with an awkward gait and I needed insoles for similar when I was young.

Anyway it was all going as expected, they said he had extremely flexible feet, to the point they stopped checking each toe as every joint was moving very easily. His muscle tone is great, his standing stance was great. When it came to walking however they were quite alarmed by how much he “toe grips”. Each toe spreads out and grips the floor with every step. He also doesn’t move his ankles at all.

this lead to “fast movement tests” which all came back fine. Then balance and tip toes, which he could barely do.

they took moulds for orthotics insoles and want him back. I was a bit shocked about how diffenrt his walk is and didn’t really ask any questions.

can anyone tell me what the toe grips likely mean? What can I do to help him walk better - it seems to take an awful lot of effort. Lots of doctors and a dentist have told me he’s hyper flexible but I’ve never thought to get it diagnosed. Should I do this to get more help? Or spot any other issues? He’s 13 and has other issues that were covering up the walking issue which I feel awful about.

part of me feels like it’s just one of those things but part of me feels like I should be doing better for him.

thanks for any help

You might want to look at Ehler Danlos which can have other health problems associated. https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

I was wondering about this after lots of googling but he doesn’t get dizzy or take a long time to heal. Not sure about stretchy skin (because he was sick of being poked and prodded yesterday).

My son has hypermobility in many of his joints which was discovered when he was about 18 months old and hadn't started walking. He had physio until he was around 8 to help with balance and strength, as well as orthotic shoes/insoles.

He's now almost 12 and to be honest apart from being able to bend himself onto some strange positions, we forget he has it! He's really sporty and fortunately doesn't experience pain or dislocations.

I think hypermobility affects everyone very differently. I joined some of the hypermobility /ehlers danlos Facebook groups but stopped following them as I felt that for some of the people on there, it was all consuming and that didn't fit with us or our experience.

It sounds as though your son may possibly be mildly affected or may only be affected in specific joints so don't beat yourself up about not spotting it. Many doctors aren't aware. I often found that I knew more than them!
I hope the toe grips help him.

In terms of a diagnosis, I think unless there are other symptoms such as with EDS mentioned above, it's just labelled as joint hypermobility disorder. They tend to just treat the symptoms if and when they arise.
It's more something to be aware of really as he grows and things stretch. If you find that there are more issues later on you can push to see a rheumatologist

Hypermobility has a real range of issues. For some it is 'just' hypermobility. The good news is that for boys, things tend to get better as they get older as the natural strength increase through puberty strengthens joints. But there can still be problems so worth keeping an eye on it. My ds has been under podiatry since he was tiny due to hypermobility issues with his feet. Orthotics helped a lot. Getting older and stronger helped. But he still suffers from joints dislocating sometimes!

My DD on the other hand has got worse as she got older - females tend to.

Both struggled through childhood with multiple aches and pains that were dismissed as 'growing pains' until hypermobility was recognised as the issue. Treatment was not always right as the source of the pain was misdiagnosed.

It is worth considering if they have any related issues - there are some useful support organisations that can help with the bigger picture. Not everyone does. Sometimes it is just hypermobility. But basically keeping joints as strong as possible helps. And a good physio when they do hurt themselves!

OP - hypermobility is the same thing as Ehlers-Danlos.

There are lots of types of Ehlers-Danlos and hypermobility is one of them.

The full name for it is hypermobile Ehlers-Danlos syndrome.

Has he been properly diagnosed with this condition and seen a rheumatologist? That's the next step if he hasn't.

If he has it then it is definitely best to get it diagnosed young as it has implications for later in life. I'm in my 30's and have recently had a diagnosis, I wish I'd known when I was younger so I could have done the right strength and conditioning exercises back then.

He will basically need to work hard on his muscle tone to compensate for the hypermobile joints. He might need some physiotherapy. But the first step is tell the GP and get him referred to a rheumatologist.

Thanks everyone, especially for letting me off the hook for not realising. He actually didn’t walk till 18 months either.

I totally freaked myself out because he has long skinny limbs and fingers and toes.

Hopefully the insoles will help and that will be the end of it. Would be great if it speeded up his walking speed too.

DD1 sees an NHS paediatric physio. I asked him the other day if he thought she was hyper mobile. At the same time she turned one foot 180 degrees and put it back so at the front and the back of each foot was the toes one foot next to the heel of the other while she said “look how flexible I am”. He just laughed and said that’s definitely hyper mobile but just being hyper mobil itself isn’t a concern.

You don't have to have every single symptom to have the condition, he might have it mildly or moderately. It's worth asking about it. Bear in mind that some GP's don't know a lot about it so you'll need to inform yourself first. The diagnostic criteria are online and worth looking at.

@fritaskeeter thanks, I didn’t even know what kind of specialist he would need referred to. Probably worth mentioning I can turn my knees 180 degrees as well, great party trick but never causes any issues.

Worth seeing gp as long thin fingers and toes with hyperflexion can also be associated with Marfan Syndrome .
Either way best to get going as early as possible with physio etc. https://marfan.org/expectations/signs/