Touch wood, we are pretty lucky with Freddie’s health these days (again, touch wood). We have one or two relatively minor issues, such as chronic constipation, and hypotonia (low muscle tone) and hypermobility (over-flexibility of the joints, or ‘double-jointedness’), but, by and large, we have got used to bumbling along without anything drastic happening. He hasn’t been a hospital in-patient since he was six weeks old. But last Thursday we hit a bit of an unexpected snag.It was one of those days where, ideally, I needed to be in two places at once. But I have yet to perfect being an ideal mother, so I was forced to choose. On the one hand, I needed to be with my daughter, helping her get ready for her school Prom – now, this may sound trivial, but it was a big thing for her. On the other hand, Freddie had an appointment at the ‘Orthotics Department’ (now contracted out to a private company – Grrr!). What was I to do?
Your High School Prom is a once in a lifetime rite of passage. We go to the so-called Orthotics Department every four months; it usually involves a 15 minute consultation in which Freddie’s feet are measured, the state of his boots and insoles is examined, and the Orthotist has a quick look at how he walks. I have been there for the vast majority of these appointments, and Daddy has been to a fair few, also, now that the clinic is no longer held at the hospital, but on an industrial estate which is not on a bus route. I don’t drive, for the sake of not ‘driving’ any more driving instructors (geddit?) to silent tears of despair, or threats of removing the headrest and slapping me round the back of the head every time I do something stupid (he was a mate of my husband’s, teaching me to drive in return for parts for his motorbike).
Anyway, where were we? Oh, yes. I decided to stay with my daughter while Daddy took Freddie to see the ‘foot lady’.
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.
Even though the boots aren’t doing him any good, he’s been prescribed a new pair (because shop-bought shoes would potentially cause actual harm), and he was able to choose the style he wanted from a small range. They’ll take about a month to come. In the meantime, his current pair are so utterly shagged that it is almost impossible to tell the right from the left. And to think that, with his brother and sister, I (and my credit card) used to whimper at the prospect of the quarterly trip to Clarks.