This picture shows the last time my 3-year-old was able to jump and run with abandon. We were at Corn Dawgs corn maze and Ike had a blast running through the corn maze and jumping on the “jumping pillows.” Several weeks later, he was diagnosed with Legg-Calve-Perthes disease (aka Perthes)
Perthes disease occurs when blood supply to the head of the femur (the ball of the hip joint) is interrupted and the bone doesn’t get enough blood. The ultimate result is that part of the bone dies. For many who are diagnosed, it means uncomfortable full-leg casts, surgery, and more.
Ike’s symptoms first appeared in the summer of 2012. It all started with a mild limp, and quickly escalated to him asking us to carry him up the stairs because it hurt too much to walk – a very rare occurrence for our active, independent little man.
Our pediatrician initially suspected transient synovitis. We treated his pain, and waited it out. It seemed to clear up – unfortunately, it returned. On the third visit to the pediatrician, we all agreed it was time to do more testing. My initial thought was arthritis. But the specialist took x-rays and almost immediately diagnosed him with this relatively rare condition.
When the condition was first described to me, the description reminded me of watching a plant die. Usually it starts with just a few leaves that dry up, fracture or crumble, and are eventually reabsorbed by the soil. When the process first begins, you may not know whether the entire plant will die, or just some of the leaves. Ike’s bone is going through a similar process – part of it is dying, fracturing and collapsing, and being reabsorbed by his body.
I’m sure that most doctors would consider my plant analogy to be largely inaccurate, but in my mind, it makes sense.
It may be another year before we know just how much of the bone is going to die… and during that time (possibly longer), he is at greater risk for additional problems.
What that boils down to is a 3-year-old under doctors orders to do NO RUNNING OR JUMPING!
Yes, I just said that my active 3-year-old boy has been ordered, by a doctor to… well… be still. On top of that, he will experience significant pain off and on for months on end.
The fact that he developed this at such a young age is both a help and a hindrance. Because he is so young, it is more likely that his bone will re-ossify, hopefully resulting in a normal, or near-normal hip joint. On the flip side, he is so young that it is more difficult to control his behavior.
Ike is a very intelligent little guy and has a fairly good understanding of what is going on. He likes explaining to everyone that he lost “bwud suppwy” to his hip – he then shows them his x-ray and explains how the “gap” between the ball of the hip joint and the “socket” is getting bigger and bigger (as the head of the femur collapses and flattens). However, knowing that he can’t run and jump is one thing… remembering not to is another. Self-regulating behavior is not the greatest strength of most 3-year-olds.
All-in-all, I think he may be handling it better than Rahn and I. As parents, we understand that there are many things he will miss out on, such as birthday parties at bouncy-house venues, ice skating, soccer, t-ball, etc. Luckily, he enjoys swimming – and we live near an indoor swim club that offers weekly group lessons. He is becoming a better swimmer every week – by this summer, he will be able to swim all around our community pool!
This is one of those moments as a parent where your children teach you more about “soldiering through” than you could ever teach them. We are lucky to have such an amazing son!
(On a slightly less serious note… while I know the disease was named for the doctors who discovered/defined it, does anyone else find it a little comical that a disease of the femur bone has the word “leg” in it … and it is spelled incorrectly (Legg)? Or is that just me and my husband being childish? 😀 )