Posted by Karen - May 20th, 2018

Dun da… Dun da… Dun da… Dun da… Dun da dun da DUN DA DUN DA DUN DA – JAWS! Flare-up, that is. SHRIEK!!

When my daughter Miranda was first diagnosed at age 2 with fibrodysplasia ossificans progressiva, that’s how I felt about the idea of a jaw flare-up. The idea was terrifying. Imagine your jaws permanently locked in place… *SHIVER*. At the time, I took comfort in the fact that “most” people with FOP don’t get jaw flare-ups until their late teens, twenties, or even thirties. I figured we had many years ahead of us, and maybe by the time Miranda got old enough for a jaw flare, there would be medicine to prevent it. But, about 10 years into our journey, it happened. Miranda was 12 years old.

It actually was kind of anti-climactic. At some point last summer, Miranda mentioned, casually, that her cheek hurt a bit. She couldn’t really localize the pain, though, and I couldn’t see any sign of redness, heat, or swelling (typical signs of an FOP flare-up), so I figured this was due to her 12 year molars coming in. I didn’t think much of it, because the pain was pretty minor, and she stopped complaining after a few days. And then, suddenly one day I realized she wasn’t opening her jaw as wide as she used to. I asked Miranda to open as wide as she could, and I was shocked to see that she had maybe one centimetre, at most, between her upper and lower teeth. Holy smokes, this was it. At the tender age of 12, a “stealth flare” (one without most of the usual symptoms) had fused Miranda’s jaw. I pointed this out to Miss M, and she was, to appearances, unconcerned about this new development. In a nutshell, her attitude was, “OK, so I can’t open my jaw much. So what?”

Since the flare happened, we’ve really only noticed a couple of distinct new resulting issues. For one thing, she has difficulty chewing hard crunchy or fibrous foods. To Miranda, that’s no biggie. Oh shucks, vegetables are harder to eat, gee what a hardship… NOT. (*eye roll from the mom corner*) On a related note, she can’t get her mouth around bigger pieces of food, so we have to cut things up smaller than before for her.

Second, and more concerning, brushing Miranda’s teeth is now harder to do. Of course I can still brush the front of her teeth as before – she can’t reach so I have to brush them for her – but I have to angle the toothbrush “just so” to wiggle it (gently) between her upper and lower teeth and get it far enough in to brush the backs of the teeth. Yes, this is a tricky thing, and I have no doubt that I’m not doing as good a job as I used to. Luckily though, dental hygiene is a well-advanced technology these days. When Miranda’s dentist saw the jaw fusion, he promptly prescribed a special dental rinse for her to use every day. This (hopefully) helps us clean M’s teeth in areas we just can’t reach as well.

Check out those beautiful choppers.

Check out those beautiful choppers.

Actually this dental thing is a bit of a worry… Should Miranda ever need cavities filled in hard-to-reach spots, I’m really not sure what’s going to happen. Damn good thing she seems to have inherited my strong teeth; her history thus far has been cavity-free – long may that continue. Pulling teeth out (if needed) is a worry as well, though by great good luck, x-rays show that Miranda has no wisdom teeth, so at least that’s not looming in her future.

If Miranda’s jaws get no worse than they are now, we’ll take it. I’m cautiously optimistic they won’t tighten up more – Miranda says that she actually can’t fully clamp her teeth together, so her jaw seems to have been fused in a slightly open position. Between that and the typical congenital FOP overbite, Miranda can still get most foods in her mouth. We can manage this, and though not great, it’s not the horror we thought it would be. Fingers very much crossed for no change for the worse from the current state.

And in closing, a spot of black humour… A couple of nights ago I was out at a pub with my husband for a fundraising event. All the local parents of Miranda’s schoolmates were there. One of them said something along the lines of, “Wow, Miranda has really grown tall and lean over the past year or so!” I *almost* said, “Oh yes, well her jaws are now fused and she can’t open them very wide and has to eat slower now than she did before, so that probably contributed.” But then I stopped myself before I said it, picturing the looks of shocked dismay this would have likely caused… Nope, best not to go there at a casual get together, ha ha. Oh the fun of FOP!



One Response to “Jaws”

  1. margaret holzer says:

    mine locked around 22ish but shortly thereafter the need arose to remove wisdom teeth. With Novocain and extreme skill & grace after 25 minutes they were with me no more! effortless and painfree!

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