Did you know that yesterday (29 February 2016) was Rare Disease Day? The one day in the entire year that people talk about the rare conditions hardly anyone has ever heard of that affect individuals and families alike. For my family and specifically in regards Celine, the condition we have spent just over the last two years dealing with is Legg-Calve Perthes Disease.
If you’ve been reading my blog for a while, you would already know about Celine’s journey with Perthes Disease. If you haven’t, then you can learn out about here and now.
Celine’s Perthes Journey
On the 10th December 2013, just 2 days before her 6th birthday, Celine went on a school trip. While on the trip she bent over to pick something up and heard a click in her hip. Why is this significant to the story, you ask? Because she spent the next week complaining of pain in her leg and hip and limping. It was after a whole week had passed and I found myself having to carry Celine on our walk to school that morning that I decided that enough was enough. She wasn’t pretending. She wasn’t making it up to get sympathy. She wasn’t exaggerating to get out of disliked chores. Celine loved walking to school but that morning she struggled. So I booked her into the doctor’s for a check up.
Our doctor checked her over. Asked her questions. Maneuvered her leg and knee around trying to find anything to be causing the pain and limp. Finding nothing he could have just sent us away and thought nothing of it. Just another hypercondriac child wasting his time. Instead our doctor issued us with a form to get an x-ray. It was another week before we could get in for it but we went and had the x-ray done.
We received a phone call on 4th January 2014. The doctors had just reopened after the Christmas/New Years holiday break. They wanted us to make an appointment to discuss the results of the x-ray that morning. It sounded urgent so we made the first available appointment and went. First glance at the x-ray, no one else would have picked it up. The flattening of Celine’s right femur head was so very slight that I didn’t even notice it until the doctor pointed it out. We were in the very, very early stages of the fragmentation stage of Perthes Disease.
The doctor advised us to get Celine non-weight bearing ASAP and I spent the rest of the day , like so many other parents have before me and so many more will do in future diagnoses, researching whatever the heck Perthes Disease was and trying to find a child sized pair of crutches for Celine. I finally learned that we could hire a pair from the outpatient clinic in the next town over for a NZD20 deposit.
Celine spent the next couple of weeks adjusting to the tools that she would be using for the next year. I was already doing day in the life vlogs by this stage (I had just started before the school trip for Celine and Blake’s birthdays and had decided to continue them before I knew anything about her hip) and had been blogging for a couple of years so people who were watching my vlogs and reading my blog who had been through this all before either for themselves or their own children gave me some advice to make the adjustment easier for Celine.
With their advice Celine and I implemented a one shoe on and one shoe off policy. The shoe on was the foot that touched the ground whereas the shoe off was the foot that had to stay off the ground. To aid with this it was suggested that I look at making Celine a Snyder Sling which I eventually modified into what is now becoming known as a Swanepoel Sling. We came up with ideas to make Celine feel confident about herself and talked to her school to make her school days easier and to advise them of the restrictions on activities she now had.
Celine had x-rays and orthopedic specialist appointments every 3 months to check on the progress of her hip and then one appointment in the middle of 2014 the specialist noted that the hip as stopped fragmenting and there had been no change from the previous x-ray. The following appointment it was noted that the femur head looked to be re-solidifying again and that we were now in the regrowth stage. Our specialist, who did not like the crutch and sling system that we were using, advised us that we could stop using it now. We didn’t. He had been trying to get us to stop using it the entire time. We continued to use it until February 2015 when Celine started the new school year (NZ school year is from February to December) as a 7 year old.
Our second year of Perthes Disease was pretty much just regrowth stage. Celine was allowed to be weight bearing but still restricted on activities. Her x-rays continued to show growth in her femur head and the second to last one even started to show some actual rounding out again. Her femur head was no longer flat. The last x-ray we had showed that more of the empty gap had been filled out and her femur head was nicely rounded. We now had the go ahead to do everything that she had been restricted of beforehand essentially clearing her and ending her journey with Perthes Disease. She still has to have another check up in a year’s time but we can now live life as normal.
If you would like to know more about Perthes Disease or Celine’s journey with it you can read about it on my Perthes Disease tab above. Or ask me a question in the comments below. I’m always happy to answer.