Perthes Disease Advice for Parents and Kids

Damn…what I wouldn’t have given to have some insight into what life would be like with legg calve perthes disease when I was younger. I’m going to do my best to give you that insight now, as a 32 year old man who had perthes when I was 7 years old. I then received a total hip replacement just shy of my 20th birthday. Life couldn’t be better now and I’m thankful for everything that has come.

Let me start first with telling you about the night I woke up in excruciating pain. As a mother or father it probably terrifies you to think that your son or daughter would ever experience this; it was brutal and the worst pain I ever felt. I woke up and walked to the bathroom only to collapse in the hallway in stabbing pain going down my entire left leg. It hit me out of nowhere. I had no idea anything was wrong and the BAM!! Knives all in my leg…

The night I tried to go to the bathroom…

It was in the middle of the night, around 2 or 3am and I started crying out for my parents to please help me. I was naturally athletic and active as a kid always doing pretty well at playing sporting and having an inherent knack for being able to perform athletically in PE class and otherwise. I’d never felt pain in my leg until this night so to say it was a surprise is an understatement.

Thankfully, the pain subsided and I was able to stay home that night rather than being rushed to the emergency room. My mom made an appointment for me asap and I was in the doctors office the next day. I went to see Dr. Richard Shindell out of Phoenix, AZ and after taking x-rays, he informed me that I had Legg Calve Perthes Disease, a relatively rare condition that occurred in about 1 in 20,000 kids and most of the time it occurred in boys. He informed me that I would need to get surgery on my hip and that I would need to be in a full body cast for six weeks as well as have a pin put in my hip to get my hip back to the way it should be.

What is Perthes Disease and how does someone get it?

Well, first of all, I don’t really know why it’s called a “disease.” It most definitely causes “dis ease” in whoever experiences it, but I generally refer to it more as a condition. Dr. Shindell informed my family and I that doctors do not know exactly what causes the condition, but they believe it to be some sort of traumatic event that happens to a child in their bone development from a young age. I attribute this “traumatic event” as likely occurring when I was playing football in my backyard with my dad and my brother one night as the sun was going down. It was starting to get dark and I was running a short post pattern so my dad could throw me the ball. I stepped in a small hole in our backyard that was masked by grass had grown inside of it, and I rolled my ankle pretty bad. I was only four or five years old at the time and I had to go to the hospital to get it checked out. They told me I sprained my ankle and that they needed to cast it. I was in a cast for about 4-6 weeks and it was all good…it was all good, right? Maybe it wasn’t all good. Maybe this was what caused the original start of my Perthes. They say that Perthes goes in stages and if you catch it early it can be fixed with minimal long term affects. The hard part is being aware of it. When the traumatic event occurs, it causes the femoral head of the bone to come out socket a little bit. It might be just enough to make it so the blood flow is interrupted which makes it so the ball and socket do not get the proper nutrients to continue the bone’s natural development. Therefore, over time the bone begins to die. As this happens, the bone structure is compromised and starts to worsen, sometimes without any pain at all until…BAM!!…you try to go to the bathroom one night and you feel like you are being stabbed all over your leg. I imagine it is comparable to wrapping a tight string around the base of one of your fingers and cutting off the circulation. It might not hurt right away, but if you leave that string tightly wrapped for too long your finger is inevitably going to start hurting like crazy. It might not be right away but you will see your finger getting bluer and bluer due to that lack of circulation. I’m not positive if this is a correct analogy, but I’m pretty sure.

Again, they say that Perthes occurs in stages. I was late in the third of four stages before having any idea of the fact that anything was wrong. Known research also says that Perthes is not congenital. If you want to get a great breakdown of Perthes, check out this great presentation:

 

 

Advice for Parents with Kids that have Legg Calve Perthes

Here I am today, 32 years old (at the time of this post) with a total hip replacement due to perthes and the ensuing arthritis that was caused by the condition. I never knew it would be possible that I’d have to get a total hip replacement at the age of 19 and I wish either myself or my parents would have had some perthes advice during those first 19 years. Here’s my advice to you mother or father with a child that has perthes…

1. Stay calm. Everything is going to be fine and your child will be better because of this situation! (MINDSET!) I’m not saying it’s a great thing that your kid has this, obviously it is not. What I am saying is that through adversity comes triumph, and if you look at your situation in a positive way, your child and your whole family will be better because of it. MINDSET!
2. Start to learn more about your own body and become educated about the condition as much as possible. The more you know about it the better off you will be!
3. Start doing yoga! Yes, YOU! You should start doing yoga and after you have experienced a couple of classes and the immense benefits of practicing, you should start bringing your child to yoga and/or begin encouraging them to practice with you. Isaac! How do I do this!? My kid is only 4 years old! Well…do yoga in front of the tv when you are chillin with your lil dude or gal. They want to be like you, so they will mirror your example. I always talk about this to the parents of the kids that I teach in my baseball lessons in Los Angeles. Seriously, DO YOGA. Mind, body, spirit connection…you will never regret doing yoga and you will get infinite benefits from it. It didn’t save my life, but it has most definitely MADE my life.
4. In addition to doing yoga, begin focusing on your diet much more intently. I ate a lot of garbage when I was younger. I was always fed well, but there was not a lot of actual nutrition in my diet. It was never a lack of love, just simply a lack of education. I thought tv dinners were healthy. HAH! This morning for breakfast I ate three raw brussel sprouts with hummus, a handful of kale, a handful of blueberries, a big green drink(called Amazing Greens…so good for you!), my normal supplements consisting of chlorella, spirulina, multi mineral vitamin, and omega 3 oils. This is my EVEryday now. I’m weird though and I want an optimal life, so I’m always refining. You don’t have to do what I do, but you should most definitely have the MINDSET of always refining. I eat a lot of plants and not a lot of meat. It takes discipline. Its worth it. If you do it, your kids will do it. It takes some time. Be patient and vigilant in your practice.

 

I’m an intense guy that loves to live life all the way, wholehearted in everything that I do. My philosophy in life is that “We are all in this together and it only just keeps getting better, EVEryday.” Thats why I created this website and these blog posts. I just want to try to help people be able to forge a better path than I was able to relative to the journey of my hip and how it all went down for me. The internet is such a blessing for all of us and I just want to add value to it. I’m always trying to add value through my instagram page @hipreplacementdude as well, so feel free to follow me if you’d like!! I hope that you do the same, and I hope this post has helped you!!

Peace, Love, Motivation, and Inspiration,

Isaac