Friends With FOP

Posted by Karen

When my babies were in diapers, I couldn’t WAIT for the day they’d finally be out of them…  Especially when they were big strapping toddlers and would kick, struggle and protest during the changing process.  Ugh, not a fun part of parenting kids that age.

With my older child, Owen, everything went pretty much as you’d expect.  He finally figured out how and when to use the toilet, and in those early days, we dressed him in loose pants with stretchy elastic waists.  At first I’d pull his pants down and up for him, but after a while, he of course progressed to doing that for himself.  I remember that he’d pull up his pants after toilet use, and they’d be all bunched up in the back and askew (hee hee, that was funny ).  Before long, however, he was an old hand at getting his pants up nice and straight.

When it was Miranda’s turn, her little body was already affected by Fibrodysplasia Ossificans Progressiva.  At just over age 3, her left shoulder could move very little, and her left arm couldn’t straighten beyond a 120 degree angle.  However, her right arm was still pretty good – no elbow fusion, and her shoulder restriction only began when she’d try to raise her arm above chest level.  I thought Miranda would have some difficulty getting her pants up and down, but that she’d figure out a way to do it.

Here's Miranda in pre-right arm fusion days. You can see that she could stretch her right arm backwards with ease.

Anyway, Miranda was progressing nicely with toilet learning when, at close to age 3.5, she had an FOP flare-up which affected her right arm.  When the swelling finally went down, her right arm was locked in a bent position, with the elbow at about a 120 degree angle.  Unlike with the left arm, however, she couldn’t move the arm more than about 5 degrees at the elbow, so it was pretty much stuck that way.  Additionally, her right shoulder was by then almost as resricted as the left one.

This was taken in April 2008, a few months after the last photo. Here, her right arm flare-up was just beginning. Her arm was starting to have a hard time straightening at the elbow, though her shoulder was still pretty good.

With this right arm fusion, Miranda lost a significant amount of movement.  It became clear right away that she simply COULD NOT manage pulling her pants up and down on her own.  And so, though she was soon fully “toilet trained”, she couldn’t use the bathroom by herself because she required someone to help with her pants.

By now, almost 2 years later, Miranda still can’t manage this part of the process.  We’ve worked on it, but the best she can do is get her underwear down after lots and lots of struggle (forget about getting them back up again, and also forget about any pants on top of the undies).  I remain hopeful that she’ll make further progress on this, but I think it’s going to take a while…

Wiping is another story.  She can do the “front”, but not the “back”.  To help her manage this, we plan to get a special wand-like toileting implement which helps people with disabilities (haven’t done so yet; really need to look into this).

Another thing we’re going to do is have a bidet installed.  OK, that won’t help with the pants issue, but it will give Miranda some independence in cleaning herself.  I had occasion to tryone of these out earlier in 2009 at the house of another family affected by FOP, and it seemed pretty useful.  In case you’re unfamiliar with a bidet, it’s a special kind of toilet seat which sprays water at the user’s bottom, and then dries it with a sort of “blow dryer” effect.  Like everything else these days, they come in these high tech versions with various options, and even with remote controls (OK, that calls to mind an almost hysterically funny image – why would you need remote control bidet use? – but actually it’s very practical for a person with restricted torso movement for whom twisting to turn a handle is difficult).

At first we looked into getting a bidet covered by the Province of BC’s “At Home” program which provides coverage of equipment expenses for people with disabilities.  This is the first time we’ve applied for anything from this program since being covered for it last year…  And we were rejected.    It turns out that we’d be covered if Miranda had needed ostomy supplies, or diapers, but not for a bidet.  Oh well.

Right now, we’re just at the beginning stage of getting the bidet.  The first step is to get an electrician in to put a special kind of electrical outlet near our toilet.  A guy is coming this week to do that for us.  Once that’s in place, we can get the bidet people to come in and install the bidet unit.

Miranda is quite tickled by this idea…  “You mean it sprays water at your BUM?”  She thinks the image is pretty funny and has asked us a few times about when we’ll be getting the bidet.  I hope hope hope this will turn out to be worthwhile.

NOTE - if you are a person with FOP and have figured out this pants conundrum even with fused elbows, I’d love to hear the mechanics of how you work this out.  Ditto on any comments about wiping devices, or bidets.  Please feel free to e-mail me privately at karenandpete@shaw.ca if you don’t like the idea of leaving a public comment.  Thanks!