Perthes Disease: Advice for Parents and Kids

Damn — what I wouldn't have given for some insight into what life would be like with Legg-Calvé-Perthes disease when I was younger.

I'm going to do my best to give you that insight now, writing this at 32, having had Perthes at 7 and a total hip replacement just shy of my 20th birthday. Life couldn't be better now, and I'm thankful for everything that's come.

The night I tried to go to the bathroom

Let me start with the night I woke up in excruciating pain.

If you're a mother or father it probably terrifies you to think your son or daughter could go through this. It was brutal — the worst pain I've ever felt. I woke up, walked toward the bathroom, and collapsed in the hallway with stabbing pain running down my entire left leg. It came out of nowhere. I had no idea anything was wrong, and then — knives, all through my leg.

It was two or three in the morning and I was crying out for my parents to help me. I was a naturally athletic, active kid. Always did well at sports, had a knack for it in PE and everywhere else. I'd never felt pain in that leg until that night, so "surprise" is an understatement.

Thankfully it subsided enough that I could stay home rather than be rushed to the emergency room. My mom got me an appointment as soon as she could and I was in the doctor's office the next day.

I saw Dr. Richard Shindell in Phoenix, Arizona. After X-rays, he told me I had Legg-Calvé-Perthes disease — a relatively rare condition he said occurred in roughly 1 in 20,000 kids, most often boys. I'd need surgery, a pin in my hip, and six weeks in a full body cast.

What Perthes actually is

First of all, I've never really understood why it's called a "disease." It absolutely causes dis-ease in whoever has it, but I tend to call it a condition.

Dr. Shindell told my family that doctors don't know exactly what causes it, but they believe it involves some kind of traumatic event during a child's bone development.

For what it's worth — and this is my own theory, not medicine — I've always attributed mine to a night playing football in the backyard with my dad and my brother. The sun was going down, I was running a short post pattern, and I stepped in a small hole hidden by overgrown grass and rolled my ankle badly. I was four or five. They said it was a sprain and casted it for four to six weeks, and that was that. Maybe it wasn't that.

Here's roughly how it works. When the traumatic event happens, the femoral head shifts slightly out of the socket — sometimes just enough to interrupt blood flow, so the ball and socket stop getting what they need to develop. Over time the bone begins to die. The structure is compromised and gets progressively worse, sometimes with no pain at all, until one night you try to go to the bathroom and feel like you're being stabbed.

I imagine it's like wrapping string tightly around the base of a finger. It might not hurt right away. But leave it long enough and that finger is going to hurt like crazy, and you'll watch it go bluer and bluer for lack of circulation. I'm not positive that's a perfect analogy, but I'm pretty sure.

Perthes is said to go in stages, and catching it early means it can be managed with fewer long-term effects. The hard part is knowing to look. I was late in the third of four stages before anyone had any idea something was wrong.

Advice for parents

I never imagined I'd need a total hip replacement at 19, and I wish my parents or I had been given some real Perthes advice during those first years.

Here's mine.

Stay calm

Everything is going to be fine, and your child will be better for this. I'm not saying it's a good thing that your kid has it — obviously it isn't. I'm saying that through adversity comes triumph, and if you look at the situation the right way, your child and your whole family come out better.

Get educated

Learn about the condition and about your own body. The more you know, the better off you'll be.

Start doing yoga — yes, you

Do a few classes yourself first. Once you've felt the benefits, start bringing your child along, or encourage them to practice alongside you.

"Isaac, how? My kid is four." Do yoga in front of the TV while you're hanging out with your little dude or gal. They want to be like you. They'll mirror what you do. I say this to the parents of every kid I coach. Mind, body, spirit — you'll never regret it.

Focus on your diet

I ate a lot of garbage when I was young. I was always fed well, but there wasn't much actual nutrition in it. That was never a lack of love — just a lack of education. I genuinely thought TV dinners were healthy.

This morning I had three raw Brussels sprouts with hummus, a handful of kale, a handful of blueberries, a green drink, and my usual supplements. That's my EVEryday now.

You don't have to do what I do. But you should absolutely have the mindset of always refining. It takes discipline, and it's worth it. If you do it, your kids will do it. Be patient and be consistent.

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I'm an intense guy who loves to live all the way, wholehearted in everything. My philosophy is that we're all in this together, and it only keeps getting better, EVEryday.

That's why I wrote these posts in the first place — to help someone forge a better path than I managed, through a journey I had to figure out alone.

Peace, love, motivation and inspiration,

Isaac