Those FOP toes

Posted by Karen - March 29th, 2009

A couple of weeks ago I realized Miranda had outgrown her shoes. It was time for new ones!  I set off to the mall to try and find her some…

Ever since Miranda was old enough to need shoes, I’ve had to buy her footwear with a wide toe case. When she was very young, of course, I didn’t know why – I just figured she had an unusually broad foot with a bunion. OK, bunions are unusual on a baby, but whatever, our pediatrician wasn’t alarmed by her feet, so why should I be? Before we knew about her medical condition, we figured that Miranda’s unusual goes were just a “one-off” anomaly.

When Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), we learned the secret of the toes.  It turns out that often the first and only sign that a child has FOP is toes like Miranda’s.  Nearly everyone with FOP has unusual big toes – the toes are missing the last joint in the toe and are usually angled inward, with a bunion-like protrusion on the side of the bottom toe joint.  Prior to Miranda’s diagnosis, I had seen x-rays of her toes which clearly show the missing joint (there are two separate bones, but they don’t seem to connect).  Also, in Miranda’s case, the entire foot bone leading to the big toe is angled away from the rest of the foot more than is typical for the average child, which causes her extra-broad foot.

m-feet-from-top-3-28-2009-3-12-17-am

In the photo above, you can see how wide Miranda’s feet are.  You can also see how Miranda’s toes angle inward, and the suggestion of the bunion.  When Miranda’s standing, however, I find the abnormality isn’t quite as obvious, probably because she puts weight on her feet and everything is spread out.  You can see the difference better from the bottom of Miranda’s feet, as follows…

m-feet-from-sole-3-28-2009-3-13-20-am

When the weight is off Miranda’s feet, her big toes angle more sharply inward, such that the big toes actually curve underneath the second toes.  The second toes are then pushed upward.  When we got the FOP diagnosis, it took me a while to mentally wrap my mind around the idea that these toes, which I had always thought so insignificant, were the sign of an extremely rare and devastating disorder.  Sometimes I still have a hard time grasping it.

I now know that the FOP toe abnormality is variable in terms of appearance to the untrained eye.  Some people with FOP have a barely noticeable abnormality, while in others it’s extreme, with the great toe being shrunken and stunted in appearance.  Miranda’s is one of the more milder versions; her big toe appears normal in shape and size, but just angled off to the side.  When Miranda was assessed by Dr. Fred Kaplan, the world expert on FOP, he looked at her bare feet standing on the floor and said, “Oh, now that’s subtle…”, in a sort of intrigued tone of voice…  Maybe the fact that Miranda’s toes looked normally shaped (despite the odd angling) was the reason why the various medical specialists who looked at her feet pre-diagnosis didn’t clue in that there was something going on.

Anyway, returning to the shoes…  I’ve had much success in the past with “court” style running shoes, which have a clearly rounded toe.  I found these at Zellers, Wal-Mart, wherever.  Also good were the “skater” type of running shoes.  There was once, however, when I wondered whether I needed to really take such care with these broad toe shoes.  I decided to try a pair of big brother Owen’s hand-me-down shoes on Miranda.  They were the right size, though with a narrow toe case.  I thought it would be OK, so I started having her wear them.  Suddenly a couple of days later, I realized she Miranda was limping!  With my heart in my throat, I took off her pants and socks and thoroughly examined her legs.  Hips were fine, knees were fine, ankles fine, leg muscles too – until I came to the feet.  I then saw that Miranda’s left second toe was noticeably red and swollen.  She had a dreaded FOP flare-up in her toe!  I freaked right out and immediately administered Prednisone.  Believe me, I was thanking my lucky stars when, 4 days later, the Prednisone had effectively eliminated the toe swelling and Miranda could walk normally.  That was WAY too close for comfort…  Needless to say, after that scare I ALWAYS make sure we get wide toed shoes.

When I went to buy new shoes a couple of weeks ago, we got aced out.  Nobody seemed to have the court or skater style shoes, or if they did, the shoes all had laces (very inconvenient for a child Miranda’s age).  I checked in store after store, with no luck.  Turns out that narrow shoes are in style right now for preschoolers.  $#@%#!!!!  I posted my frustration on Facebook, and lo and behold, my good friend (and co-blogger) Suzanne reminded me that Stride-Rite makes wider shoes for young kids.  I did an internet search, found a nearby specialty store in a mall I hadn’t been to, went there and boom, 2 pairs of new shoes!  Great!  Miranda’s FOP toes can wriggle around in comfort.

4 Responses to “Those FOP toes”

  1. Elena P says:

    Hy my name is Elena,I’m from Romania ,I’m 21 years and i have FOP also from the age of one year…if you want to keep in otuch with me here is my email…..elena_pomana@hotmail.com hope i hear news from you soon !

  2. Elena P says:

    Hy my name is Elena,I’m from Romania ,I’m 21 years and i have FOP also from the age of one year…if you want to keep in otuch with me here is my email….. elena_pomana@hotmail.com hope i hear news from you soon !

  3. Elena P says:

    Hy my name is Elena,I’m from Romania ,I’m 21 years and i have FOP also from the age of one year…if you want to keep in touch with me here is my email….. elena_pomana@hotmail.com hope i hear news from you soon !

  4. RI says:

    hey,i m 16yr old n have FOP…And yea my toes are angled inward as well…This abnormality is getting very frustrating for me now…I just wanna get rid of it..Damn :(



Leave a Reply