The flu shot and FOP, round 5

Posted by Karen - December 13th, 2015

This is my 5th almost-annual post about the flu shot and fibrodysplasia ossificans progressiva. Having YET AGAIN had a… “challenging”… experience with getting my daughter Miranda her flu vaccination, I’ve resigned myself that it will be a struggle every year.

Why is this so hard? The background issue is that because of her FOP, Miranda can’t get an intramuscular injection. An injection into muscle creates trauma to the tissue, and that in turn can lead to an FOP flare-up which causes bone to form at or near the area of the injection (NOTE – to be extra confusing, this doesn’t always happen – only sometimes). And, of course, the flu shot is normally administered intra-muscularly. Yes, there is a nasal mist option which is squirted up the person’s nose, but at the present time that’s not recommended for people with FOP because of various reasons which I won’t go into (please contact me if you actually want the details). The only remaining option is to do the flu vaccination sub-cutaneously (just beneath the skin) as opposed to intra-muscularly. That’s not the way it’s done for the vast majority of the population, but it CAN be done that way.

So anyway, it turns out that public health nurses in BC, who do many of the flu vaccinations where we live, seem to be kind of squeamish about administering the flu shot sub-Q. This is, apparently, a pretty unusual thing for them, and I always get pushback about why it’s necessary (sigh).

Several years ago, I looked into the issue and figured out that since my family physician and Miranda’s paediatrician weren’t offering the flu shot, the next best option was a public health nurse. I wasn’t about to take Miranda to, you know, a pharmacist or walk-in medical clinic and have to deal with all the fun of explaining FOP. Our local public health office already has a file about Miranda, so I figured – and actually still think – that going there was the best option for a flu shot. As such, public health flu vaccine clinic it is.

I actually had fairly major difficulty getting the shot for Miranda in previous years. Should you want to read about this, enter “flu” into the search engine here on this website, and it will pull up my previous posts. Anyway, I have at least figured in the last couple of years how to minimize the difficulty. I’ve got a specific contact nurse at that health office, and since she knows the scoop about FOP and the need for sub-Q, I enlist her help in setting an appointment. She always tells me that she has put a note in Miranda’s file explaining about the need for sub-Q. However, though I believe she has good intentions in that regard, that last important bit seems to somehow fall through the cracks. End result? Flu-shot-2015 ended up pretty much the same as the 2013 version (we didn’t do one in 2014 because M was in a state of active FOP flare-up, and you can’t do any vaccinations during that time).

What happened was this – we walked into the clinic earlier this week, and confirmed to the nurse that Miranda, Owen and I would all be getting our shots, and that Owen’s and mine can be done the typical way but Miranda’s must be sub-Q. The nurse stared at me blankly, and said, “We can’t do the shot sub-cutaneously. It’s intra-muscular only.” ARGHH!! At which point I politely but firmly informed her that YES, it can indeed by done sub-Q, and that their office has done it for us numerous times that way. YES, I have looked into the issue in detail and confirmed that this is the ONLY option for Miranda. GAH… At least this nurse, to her credit, folded pretty quickly and agreed to do the sub-Q shot – a couple of previous times I’ve actually had them refuse and I’ve had to reschedule after all sorts of rigamarole. In any event, she did do all of our shots, and she did M’s in the way I required, and I then said to the nurse: I’ve been told that there is a note in Miranda’s file explaining the situation and stating that we need the shot sub-Q. Is that note not there? She then said that the flu clinic nurse doesn’t even see anyone’s file, so she has no idea (!!).

OK, note to self – in the future I’m going to ask our special contact at the clinic to not just leave a note in the file, as she says she has done, but instead to actually GO TO THE FLU CLINIC on the day of our appointment and explicitly explain the situation to the nurse on duty! Sheesh. I think our special contact at the clinic was unaware that the duty nurse that day doesn’t see any person’s specific file but just happily injects away…

So long story short, we did ultimately get the shot. Miranda had a modest bit of swelling at the injection site, and some redness. It was also, she said, a little bit sore, especially if bumped into, but not too bad.

 

 

 

 

 

 

 

 

 

 

 

 

After a few days, it looked like this…

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I’m glad this is now over with for one more year.

And now, just because the holiday season is upon us, here is a Christmas-themed photo of Miranda…

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PS – If you or your child has FOP and you’re interested in getting in on the current Phase II testing of the potential FOP drug Palovarotene, of if you’re interested in other ways to get involved with FOP medical research, please see the website of the International FOP Association at www.ifopa.org

3 Responses to “The flu shot and FOP, round 5”

  1. Julie Collins says:

    Hi Karen
    Another great post as always and very familiar to our annual experience for Ollie.
    Just want to ask -re tetanus shot-what’s your understanding about this? Ollie has never had it because in the past we’ve been told that’s one impossible to do sub Q?

  2. Hi Karen
    Another great blog post as always and very familiar to our annual expenses for Ollie.
    Just a question re tetanus shot-what’s your understanding-we’ve always been told it’s a no go as can’t be given sub Q?

  3. Marilyn Hair says:

    Karen, I give you credit for keeping at this every year to make sure Miranda gets this important flu immunization. Can you ask the Public Health nurse who writes the note to give you a copy of the note to show to the nurse on duty?

    Julie, Sarah also did not have the tetanus (in US it’s a combined tetanus-pertussis-diptheria vaccine) vaccine as a child. There is a resurgence of pertussis as that vaccine seems to lose it’s immunity in teenagers and young adults, and several years ago Sarah was advised to get the adult TDAP version of the DPT vaccine to immunize her against pertussis. She needed several injections since she wasn’t immunized as a child. She got them in her upper arm which is not so risky since, ironically, her shoulder and elbow joints are already immobilized by FOP bone. Sarah has not reacted to her injections even when they were intra-muscular and we feel fortunate for that. Miranda’s red swelling looks nasty.



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