Immunization and FOP

Posted by Karen - July 11th, 2010

Posted by Karen

My husband Pete and I are strong believers in vaccination.  And so, when Miranda was a baby, we got her all the recommended shots and boosters and so forth.  Every one of these shots was given intra-muscularly (“IM”), and none of them (fortunately) caused any problems.

At age 2 years, 3 months, however, Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva.  One of the many things we were told in the early days was to avoid IM injections for her.  The reason for this proscription is that injecting a needle into a muscle causes trauma to the muscle, and thus causes a distinct risk of an FOP flare-up and ossification.  Obviously not a good thing.  We don’t know why Miranda had no FOP reactions to her earlier shots; it could be just luck, or it could be because her FOP gene wasn’t “active” yet (my own personal theory).  Anyway, the alternative, we were told, was to have immunizations done sub-cutaneously (just under the skin rather than injected into the muscle).   When we got Miranda flu shots last fall (H1N1 and seasonal), we were able to get them done “sub-Q” style with little trouble.

Right now, we’re doing a bunch of stuff to get Miranda ready for kindergarten, and that includes getting her the age 4-6 vaccination booster.  This is supposed to be a Diphtheria/Pertussis/Tetanus/Polio combination shot.  I read in the International FOP Association’s “Guidebook for Families”, however, that it can be a problem to do a Diphtheria/Pertussis/Tetanus shot sub-Q because it has high potential to cause a nasty skin breakdown. 

With this in mind, I sought about finding out what options there are for Miranda.  I found out that the Polio booster can be given individually and sub-Q without a problem, so that was good.  I wondered also whether I could get at least one or two of the other diseases covered individually.  Someone on our FOP Yahoo group had told me that she got Tetanus sub-Q for her own daughter, so I thought we could maybe do that.  However, when I checked with our local health region authority, the nurse looked into the issue and said nope, their supplier doesn’t give them any of the D/P/T shots split up individually.  (She added that her information was that the combo booster COULD be done sub-Q, but I trust the IFOPA’s information rather than theirs, so didn’t view that as a solution.)

In the end, I scheduled Miranda for a Polio booster shot alone.  We went in and had this done on Thursday, July 8.  Miranda protested, and whined that she didn’t want it done, but when she saw I was prepared to hold her in an iron grip to get it done, she acquiesced (though asked me to cover her eyes, which I did).  In the following days, she didn’t have any swelling from the shot, though did have a bit of minor redness around the injection point.

I’m a bit disappointed that it appears we can’t get the other boosters done.  Pertussis in particular is a disease which scares me – the common name for that is whooping cough, and I think it would be an exceptionally bad thing for a person with FOP to get whooping cough, as FOP causes limited chest expansion.  I plan to ask our pediatrician to check with Children’s Hospital to see if they have any further options for Miranda, but I suspect we’re just going to be aced out on this.

This is a picture of Mirnada I took this week, after she asked me to put on her ballerina costume.  She wanted to wear this all day...

This is a picture of Miranda I took this week, after she asked me to put on her ballerina costume. She wanted to wear this all day...

3 Responses to “Immunization and FOP”

  1. Amber says:

    I hope that you’re able to find a solution that works for you. I know that finding anything other than the standard vaccines can be hard, but I’ll keep my fingers crossed for you and for Miss M.

    I also think that cases like Miranda’s are exactly why they encourage everyone to be vaccinated. If we all vaccinate our kids, then the few children who can’t be vaccinated for whatever reason are covered by herd immunity. But I have no idea how many people who CAN vaccinate, still DON’T.

  2. Could you get it done at a public health clinic in the US?

  3. As all of us were able to get ready for this last move, Sarah not to mention I encased up many of our CD collection.

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