Footnotes – An Update.

A while ago I wrote about the problem Freddie has with his ankles as a result of a combination of hypotonia (low muscle tone) and hyper mobility (extreme ‘double jointedness’).

Freddie exhibits something called ‘pronation’ or, since pronation itself is a normal, but brief, phase in each footstep, I should say ‘over-pronation’. Over-pronation is where the foot rolls inwards all the time, so that a person appears to be walking on their instep; the toes, however, point outwards, at what I call the ‘ten-to-two’ position. Right, brace yourselves, here comes the science bit:
Tendons are the flexible, but inelastic, cords of strong collagen tissue that attach muscles to bones. During movement, the muscles pull on the tendons. People with DS seem to have a genetic disposition towards a defect in the gene for tendon development, leading to a greater than usual elasticity of the tendons. This means that the tendons stretch when the muscles pull on them, reducing the effectiveness of the movement produced. Pronation (or over-pronation) is one of the most common signs of this in individuals with DS.

Freddie’s degree of pronation has always been quite pronounced — from certain angles it can look as though he is almost walking on his ankles. For that reason, as soon as he started to stand the physiotherapist referred him to the orthotists so that he could be prescribed orthotic shoes: rigid, high-top boots designed to improve the position of the foot whilst they are being worn, to reduce the likelihood of injury when walking. In Freddie’s case the orthotist also prescribed special insoles too.

On this visit, the ‘foot lady’ turned out to be a ‘foot man’. After examining Freddie’s boots, and the little feet that had been in them, he told Daddy that he must make an appointment for Freddie to see the GP as soon as possible, as he needed to be referred to an Orthopaedic Consultant. The pronation is now so severe that the boots are no longer able to hold his feet in the correct position; instead, Freddie’s feet twist inside the boots and actually deform them, rigid though they are. In turn this unnatural foot position causes rotation of the internal structures of knee and hip, which could lead in time to knee problems, lower back pain and difficulty in walking. More vigorous treatment of the problem is required. He may need surgery.

This came as quite a shock, as no one has ever even hinted that this may be a possibility in the long run. Orthopaedic consultant? It’s never been mentioned before. As far as we knew boots and insoles were the be-all and end-all.

I hate the idea of putting my little man through an operation, but I hate even more the idea of him not being able to lead a full and active life due to pain and debility, so, if surgery is the only way, so be it. I’m hoping they will be able to try splints first, although I don’t much fancy the palpitation-inducing wrestling match it will take to get them on every morning. Still, it will save me having to go for a work-out.

Well, we saw the Orthopaedic Consultant during the summer holidays, and, while she didn’t rule out the possibility of surgery at some point in the future, she said that splints should be tried first, and referred us back to the Orthotics Department, who would be responsible for making and overseeing the use of them.

So today I took Freddie to have casts of his legs taken that would be used to mould the splints to fit. Knowing that I would have to keep him still while the plaster was applied and left to harden, but not knowing how long this would take, I went prepared – iPad, DVD player (incase the iPad didn’t work), books, snacks, drinks and stickers, and the buggy (to help keep him ‘restrained’).

The Orthotist we saw today was not the one who initially referred us to the Orthopaedic Consultant. He had clearly read Freddie’s notes, though. But when he said “So, I’m supposed to be casting you for splints today”, there was something in his manner that suggested this wasn’t going to happen.

He removed Freddie’s shoes and socks, and proceeded to examine his feet and ankles very thoroughly, flexing them this way and that way, and looking at them intently. Then he explained, in great depth, why, in his experience, splints were likely to cause Freddie more problems than they would solve. What he said made perfect sense, especially When he demonstrated on Freddie’s foot. I queried why no one had explained this to us before, and he said if Freddie were an exam question on the forces required to correct his foot position, and how you would achieve this, splints would be the textbook answer. But it’s all very well a surgeon saying “the foot can  be moved into the correct position,  so we’ll put him in splints”, when they won’t see the side effects of the splints in practice, in his case.

He explained that the tendons on the outer side of his feet were so shortened and tight when the foot was pulled into the correct position that they were protruding over the top of the bone: in his experience, he said, the rigid plastic would be pressing directly on them, and likely to cause tendonitis. In addition, a rigid splint would put such pressure on certain points of his foot that it would cause the skin to break down. He pointed out that even when he held Freddie’s foot in the soft of his hand, in the same position it would be in the splint, Freddie was unhappy; he complained that it hurt. Splints would really slow him down, make him reluctant to walk, even.

He recommended first trying device that fits inside the shoe like an insole, but offering more aggressive support, though not as harsh as the splint would be. He couldn’t guarantee anything, though he’d had good results in the past, and if it did nothing else, it would give us an idea how his kin and tendons would react to additional pressure.

Freddie was an absolute star – very patient with all the fiddling about, even  when his feet had to be forced into a position that hurt. So, we’re back to Piedro boots for now, but Freddie’s not bothered, and he can run about quite happily, which is what matters.

 

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