A typical September

Posted by Karen - September 21st, 2014

Posted by Karen

The teachers’ strike/lockout in our province is now over, so it’s FINALLY back to school for my kids. Yes, it’s really starting to look like September, down to the last detail… Including a new flare-up of my daughter Miranda’s fibrodysplasia ossificans progressiva.

It happened last year, and also two years before that (OK, skipped the year Miss M was in grade 2). Why flare-ups just at back to school time? I really have no idea. It’s probably just fluke, but there you have it.

Last year at this time it was a right knee flare, which left Miranda with the inability to fully bend her right leg at the knee. This year it’s a more “old school” flare-up on my girl’s neck (I say “old school” because she had a bunch of these between age 2 and 4, but none after that until now).

It started the way flare-ups often do, which is to say that about a week ago, Miranda was sleeping and then all of a sudden urgently called for me. I came dashing into her bedroom to find her sitting up, completely disoriented, and looking around. She actually wasn’t even really awake, so I laid her back down and tucked her in again. I didn’t think much of this at the time, but now I realize this was the FOP warning bell – Miranda hasn’t had many spontaneous, non-trauma related flare-ups in the past few years, but when she did used to get them, she would always have an episode of whimpering, crying, or calling out in her sleep a day or two before it would appear.

Anyway, a couple of days later I realized that the right side of her neck was looking a little bit “chubbier” than usual. I gently felt the area, but didn’t detect anything. The next day, though, was a different story. That day I found that Miranda had a distinct swelling in the region of her right neck area, and stretching up to the right side of the area at the bottom of her jaw. She said it hurt when I (oh so carefully) touched that region as well.

Neck flare 20-09-2014 10-13-55 PM

In this photo, the flare-up is visible as a fuller-looking area of the side of the neck and under-chin.

This is always a sad thing, but what can you do? The answer is not much, except give anti-inflammatory medications and/or painkillers. Normally I would give Miranda Celebrex for a flare-up anywhere on her torso, but this one is partially on the throat, so Prednisone (heavy duty, hard-core anti-inflammatory) it is. We have to be extra careful with throat region flare-ups, because an extreme one could make it hard for M to swallow or even breathe (which gives me the cold shakes and nausea to even contemplate).

As of yesterday and today, the flare-up is doing what they usually do. To be more specific, it hurts less, and the area of the flare, maybe 3 inches in diameter, feels QUITE hard, like a flat piece of bone. In fact it’s not bone, yet – the extreme firmness is due to the swelling effect of the FOP inflammation. If this one continues to go according to the usual pattern, the tissue will stay firm like this for up to a couple of weeks, and then all of a sudden rapidly go soft again. Also, there will be a piece of bone partially formed in there, and maybe we can detect it or maybe we can’t (if located deeper in the muscle). Or, instead of going soft, the flare-up could suddenly start to change location and spread elsewhere – for instance, it could vacate the throat and spread toward the back of the neck, or possibly down the collarbone, or maybe (worst of all) up the side of the cheek to the jaw.

Sigh. I hate all of this so, so much. Undoubtedly Miranda does too; she’s mentioned a number of times recently that she really wished she didn’t have FOP.

Really, really hoping for an FOP drug sooner rather than later. In fact, available yesterday would be great.

Sunday before school 21-09-2014 10-19-36 AM

Miranda, happy and in good spirits despite her neck flare.

One Response to “A typical September”

  1. Irene Snijder says:

    It is a FOP alarm bell, I noticed the same by Tess. When Tess started to scream after four hours of sleep I know she will have a flare up the next day. The mother of Jelena also noticed this.



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