footwear for DS with hypermobility and hypotonia

[BlueberryPancake]

DS 5 is hypermobile and his muscle tone is low, and low reflexes, and he walks with his upperleg/knees/feet pointing inwards. It's not severe, but he does fall a lot, gets tired of walking easily, etc.

My MIL suggested we'd get him old fashion boots to support his ankles, is this still recommended? Otherwise, which shoes/boots are recommended? We have always been to clarks for shoes but there must be better options... Thanks!

kickers are quite good supportive boots if your child hasnt been prescribed orthotic footwear

He doesn't have a physio, although we have asked for it. I have two letters stating ' The referal states that your son has hypotonia and joing laxity. We do not offer treatment unless the child is complaining of pain. We are unable to change his basic postural tone. We would advise that parents to encourage all gross motor activities' bla bla bla. So basically, DS will not even be assessed by a peadiatric physio. We are thinking of going private. A bit fed up tbh.

I will def look into the piedro boots.

you could try asking for a referral to orthotics even if the physio won't see you, they can sort piedros too if he needs them. Otherwise kickers are good as pp said, have a look on line to see if you can find them in the sale as they can be expensive, alternatively have a look at childrens walking boots, sports direct usually have some cheapish ones. Dd3 had some karrimore ones that her physio said were really good while we waited for her new piedros.

My dd has hypermobile ankles and knees (and possibly hips) plus low muscle tone. Like you, not that severe, and we saw a phsyio once who discharged her. But her feet roll inwards and already at under 3yo I can see her knees starting to meet and it affecting her posture.

We were recommended to always get shoes with very stiff support at the heel - StartRite are the best for this, as well as Kickers. And no (or very limited) open-backed shoes or sandals, so crocs, flip flops, birkenstock etc all ruled out other than for a very short time.

I am also thinking of seeing a podiatrist to see about arch supports - might be worth doing too?

How do they know they can't help if they haven't assessed? I thought these blanket refusals were not allowed??
I would challenge that although he may not be suffering pain, it is impacting his quality of life & insist on an assessment before they decide they cant do anything

My DD had hypotonia and she had some boots as her second shoes to support her ankle. She has had some osteo appointments and has "normal" footwear now.

My son sounds fairly similar. He has hypertonia on and off n his ankles, otherwise it is hypotonia and then he also has hypotonia in his torso. i think he also has hypertonia somewhere else but can't remember off hand. He has cerebelllar signs that the physio's has recently picked up but the doctors are kind of disputing.

Anyway getting back on point, my son has always had pierdo boots since he was 18 months old. At his last appointment we were told to try normal stiff boots / trainers on a night and weekend by orthotics but then saw his doctor who said baiscally 'no way he needs the support of peirdos'. I was being completely positive and saying no way will they say that ecause of cut backs but then again who knows ..especially after the previous messages I've just read. Not all children can say when they are in pain, I would fight if you think the decision is wrong.

Hi,
We are in a similar situation. DS is 3 and was diagnosed with hypermobile joints by a physio who recommended he wore boots to support his ankles. He didn't however 'meet the criterea' for Piedro boots on the NHS.
We looked at the Piedros and they are approx £150 to buy, its a lot of money plus the fact that a 3 year old needs new shoes so often. I looked at Clarks and Startright who both said they dont have any boots until the winter catalogue starts in September/ October time. This was in May so I didn't want to wait that long.
Eventually I found Helsinki boots. They were recommened by Fledglings. I dont know if you have come across Fledglings but they are a charity who look for and test special needs equipment and toys and then sell the best ones. They cost £65 which is still more than Clarks etc but worth it in my opinion. They are very sturdy boots, the only problem is they dont come with width sizes and my DS has narrow feet.
They are one page 15 of the Fledglings catalogue :-

www.fledglings.org.uk/docs/pdf/brochure.pdf

Sarah x

You can buy secondhand piedros on ebay

Also if you find out what size your DC needs and post here, there are sometimes threads in this section where people offer to send piedros that their DC have grown out of, for just the price of postage.

Memo shoes are another alternative, sometimes cheaper. DS had them and they seemed much the same but he has now been told to move back to piedros for greater support.

My daughter has both hypertonia and hypermobility and has piedro's through the NHS. Defo recommend them.

Piedros have a sale on some of the shoes, some of them are like half price £50.

www.gilbert-mellish.co.uk/Shop/Sale/nextstep-sandals/34.aspx

www.gilbert-mellish.co.uk/Shop/Sale/standard-boots/30.aspx