Life with FOP, age 11

Posted by Karen - November 13th, 2016

When I first started doing this blog, my purpose was to talk about our everyday life in coping with fibrodysplasia ossificans progressiva (FOP). As time went by, though, my daughter got older and more concerned (understandably) about her privacy. As such, I turned more to talking about developments in the FOP community. I think however that every once in a while it can’t hurt to talk about the challenges we face, especially if I’m careful to talk about things mainly from my perspective. And so, here are a bunch of the FOP related issues we’ve dealt with recently…

The first thing started with the beginning of the school year. In short – Miranda started getting on my case about walking to school by herself. I get this; other grade 6 kids are walking to school on their own or with a friend, and she wants to do that too. The problem for us, though, is that old FOP chestnut – how to do it safely. Given that even a minor trip could send my girl falling flat on the hard pavement, with risk of FOP flare-ups, concussion, etc, how can I just let her go on her own? Besides, carrying her backpack all the way to school (even if it is only 350 metres from our doorstep) is too awkward for her with her locked shoulders and elbows. But on the OTHER other hand, I do want to promote whatever independence she can possibly have. Oy…  I thought about this hard, and here’s what we came up with: Miranda now walks to school with her best friend, and I carry her backpack and walk about 15 feet behind the girls. We get to the front of the school, at which point I give Miranda her backpack and let her walk with her friend, but without me, to their grade 6 classroom at the back of the school. I lose sight of the girls as soon as they turn the corner. That was the best compromise we could figure out, and so far, so good.

Miranda hanging with jellyfish at the Vancouver Aquarium.

Miranda hanging with jellyfish at the Vancouver Aquarium.

Another thing, also to do with grade 6, is that a nurse comes to the school and gives the grade 6 students up to 3 vaccinations. I had a look at which ones were on the menu, and figured out that Miranda was up-to-date on the first one, for the second she did need the booster, and she simply couldn’t get the third. Why not the third? It’s because this one can ONLY be administered in an intra-muscular fashion. Sadly, IM shots are a big no-no for people with FOP, because even something as small as needle can cause muscular tissue damage and result in an FOP flare-up. Miranda luckily avoided flares as an infant and toddler, pre-FOP diagnosis, but we sure as heck aren’t going to risk it now. End result is shot number 3 was out the window. But item number 2 – that one was a varicella (chicken-pox) booster. Miranda had had a first varicella shot as a young kid, but at that time they weren’t recommending a booster, so we never had a follow up. But now, in 2016, a booster is recommended. And, what do you know, the standard way of doing the varicella booster is sub-cutaneously, not IM…

I thought Miranda wouldn’t want to do this in school though, because she’s traditionally been squeamish about shots, so I figured I’d just take her to our local regional health office for the shot instead. But, to my surprise, Ms. M said she WANTED to get the shot at school. Wait, what?? I asked her about this a number of times, but she was adamant that she could do it and would sit still for the shot. I pondered this. Should I let this happen? Would M actually sit still, and would the nurse actually make it sub-Q only? In the end, I swallowed hard and decided to let her do it, though I wrote on the permission form in big letters, “INJECTION MUST BE GIVEN SUB-CUTANEOUSLY ONLY”. I also told Miranda to remind the nurse of this point. And so, the day came, and I gave Miranda the chance to back out. Nope, she said she would do it… At the end of the day, I asked her what had happened. She told me, without a hint of concern, that she had gotten the needle and it had all been JUST FINE, and yes she had reminded the nurse to do it sub-Q. And then she told me, again in a completely blasé manner, that while she was getting her shot, another girl who had just been vaccinated FAINTED in the hallway! Good lord, be still my beating heart… Anyway, long story short, the vaccination went off without a hitch, and no flare-up resulted. PHEW.

Finally, we come to Halloween. Much like the saga of “can I walk to school alone”, Miranda wanted as much independence as possible while out trick-or treating with 2 of her friends, though she appreciated from the start that I would insist on coming (darkness, wet leaves, and excited kids running around are great for FOP… NOT). Oh, and she wanted to wear my 3 inch high heeled shoes as part of her Halloween costume (!). I nixed the shoes, but again, walked a good several feet behind the girls while they trick-or treated. It turned out to be a good thing I was there, because, naturally, about 3/4 of the way through the evening Miranda slipped on something and ended up going down hard on her left knee (the good one), and I had to quickly run and help her up and see if she was OK. She put on a brave face, but did say that her knee hurt “a bit”. She ended up doing another block or so, and then decided it was time to go home. When we got home, we checked it out and discovered that she had skinned her knee.

Possibly I'm crazy, but I actually did let her wear my heels to the school Halloween dance.

Possibly I’m crazy, but I actually did let her wear my heels to the school Halloween dance.

 

Of course, a skinned knee would be small potatoes for your average kid. But again, FOP has to interfere in Miranda’s case. Even a minor injury like that could easily result in a disabling FOP flare-up. And so, we started on the 4 day mega-high dose Prednisone regime in hopes of preventing a flare. This sometimes seems to work (I say “seems”, because no-one actually knows), and sometimes doesn’t work. Anyway, thankfully, this time a flare-up was not in the cards. I watched it closely, but the knee made it through the roughly 10 day flare-up risk period without incident. Big relief.

See how FOP is always there, potentially making trouble, even when not active? We have to think about this kind of stuff every day. But, that said, I’m very, very glad that Miranda has been in a nice long quiet FOP phase, as some of her FOP friends haven’t been so lucky recently. I’m happy to just have to deal with this small stuff, rather than cope with a ravaging FOP beast. Long may it stay in hibernation.

 

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