Today Miranda had a dentist’s appointment. Our dentist is a terrific guy, who charms Miranda and keeps her calm in the dentist’s chair. All went well, as usual – it seems Miranda has inherited Pete’s and my good teeth.
However, I always feel just a bit apprehensive taking Miranda to the dentist. People with FOP require dental care, just like everyone else, but have a particular unique concern. The issue is that if a person with FOP stretches her or his jaw too widely, and for too long, this can provoke an FOP flare-up in the cheek muscles and lead to a fused jaw. This is also a reason why people with FOP have to take care with anaesthesia – the jaw must be opened wide for standard anaesthesia (Erin Kate had such a flare-up before diagnosis – luckily, it resolved without permanent fusion). Another issue is that when a person with FOP requires a filling, the local anaesthetic used to freeze the jaw, ahem, can do that PERMANENTLY.
A permanently locked jaw strikes me as a terrible thing. Frankly, it’s one of my biggest fears about Miranda’s FOP. People with locked jaws often have to have teeth removed so that they can eat anything other than liquids, and so that they don’t choke if they vomit. And yet, almost everyone with FOP eventually has such a fusion… And, of course they learn to cope, but why not put off that moment as long as humanly possible??
Fused jaws can lead to other problems too, beyond the obvious. If a person with a fused jaw develops, say, a large cavity in a rear tooth, some dentists will refuse to treat said person for fear of the difficulty involved and fear of causing further damage. This is the problem currently faced by a woman in Europe, who has an awful toothache that no dentist will touch… The poor, unfortunate woman. Some friends of hers are currently trying to help her find treatment.
Anyway, jaw fusion is another one of those things that I hope hope hope may never affect Miranda. Maybe, just maybe, our fantastic FOP researchers at UPenn (or even elsewhere) may find a treatment or even cure for FOP before jaw fusion begins to affect Miranda, and her friend Erin Kate…
