A caveat: You’re more than welcome to skip this section. You can jump straight to the “meat and potatoes” of the content outlined throughout the rest of the site, but knowing our story may help you understand the context of the rest of the content. Of course, every situation is different, and this is simply the experience we had. It shaped all the words on this site and is unique to my family. However, speaking to other parents of children with perthes, there is a lot of overlap emotionally regardless of treatment strategy.

Peter was five years old when he was diagnosed with Legg-Calve-Perthes in February of 2023. But before that, he was a “normal” little boy. He was always enthusiastic and energetic. Running, jumping, playing and doing what kids do. At four, he started to approach me and say “my leg hurts.” It was always the same leg. And the pain was always very mild. However, my mind immediately went to cancer. “Single leg pain, in the same leg always?! This is a problem,” I thought. His doctors said, “No fever. No limp. No worry. It’s growing pains.” I believed them. A few months later, I asked his pediatrician again. “Hey, Peter complains of leg pain after playing in his left leg sometimes.” Again, I was placated. “Don’t worry! Growing is hard work and sometimes painful.” It bothered me, but I trusted his doctor. For about a year, Peter would get ibuprofen whenever he had discomfort in one leg. 

 

We enrolled Peter in soccer when he was five. He had so much fun playing, and we always dosed him with ibuprofen before he played as his doctor said to do. But one day, he started limping. He came up to me on the sidelines and said, “I’m listening to my body, Mommy. And it hurts too much to play.” I thanked him for telling me, and we went home after practice. The following Monday I called his pediatrician and demanded we investigate. My gut told me something was wrong. 

 

We were further dissuaded. “It’s probably just growing pains. And if it’s not growing pains, it could be a form of arthritis that is easily treated.” We were given the orders for an X-ray but told it was not something we had to do right away. I am ashamed to say it took us several weeks to take the time to take time off work, pick Peter up from school and drive him to the lab. Life was busy, and we were told it wasn’t urgent. 

 

The day we finally got the X-ray was the day we got the diagnosis. And that’s all we got. A name: “Legg-Calve-Perthes disease.” Our pediatrician (We’ve since switched.) said he’d need to meet with an orthopedic specialist. 

 

I got the call with the information while I was standing in a Walmart buying off-brand Windex. I set down the bottle and started Googling right there. There were many websites, none of which told me what I wanted to know: What would happen to my child? Instead I became overwhelmed with "what if's." What if he needs the surgery? What if he has the cast? Maybe it’ll be nothing major! What if it isn’t? 

It was awful. We had to wait two weeks for our orthopedist appointment. His first available appointment was 6 weeks away, but they moved up the appointment which in and of itself sent me spiraling. Did they move it up because his condition is so severe? I was reading into everything and terrified for my child and family.

At his first appointment, we got a full rundown of what Perthes is and what was going on in Peter’s hip. The doctor was thorough. We asked questions. We felt overwhelmed and confused in spite of them. Perthes disease is extremely hard to explain even with a specialist right there holding your hand. 

 

Peter’s X-ray showed Perthes but nothing that indicated bracing would be necessary. We were given the instruction to limit all “high impact activity.” This meant our five year old was no longer allowed to run, jump, play on playgrounds or do anything overly physical. They did not even want Peter standing for long periods of time. If we could limit his hip joint’s impact, we could avoid any additional intervention. We would get another X-ray in three months for a progress check and go from there. 

 

We drove four hours for a second opinion at a Shriners hospital with a Perthes specialist. We were told the exact same thing. I'm glad we got the second opinion, as it made us more confident in our current orthoapedist after our pediatrician shattered our trust. 

We spent those three months saying, “No, Peter. Stop. You can’t.” over and over and over and over again. It was an impossible ask. He was five and all he wanted to do was play in a way that was detrimental to his hip joint. The doctor said to just do the best we could; he knew this would happen. But it was emotionally straining on both Peter and us as parents. We started taking Peter to the pool as much as we possibly could since “you can do whatever you want in the water, Peter!” and say “Yes” for a change. It was the only legitimate physical activity he was approved to do.

The nearest pool we could access was 30-40 minutes from our house and Peter’s preschool. So after a long day at the office, one of us would drive to school, pick up Peter, drive to the pool, change Peter into swim clothes, swim in the water (he wasn’t skilled enough to swim on his own) for two plus hours, shower us both at the grimy public cabanas, dress him in his PJ’s, figure out what to feed him, drive home, and go to bed. It was exhausting. And to be perfectly honest, I rarely, if ever, enjoyed that time. It was like a second job built on guilt which robbed me of any family time at home or sense of normalcy. Household chores waited for me, but not the time I needed to do them. Read a book? Watch a TV show? Ha! No time for that. But Peter did enjoy it, and got quite good at swimming during that time.

Fast forward three draining months to our check in appointment. While it had been challenging, we figured out a “new normal” and were making it work. Unfortunately, Peter’s X-ray at this appointment showed unwelcome developments. There was a new cyst on the X-ray which indicated the disease was more severe than originally anticipated. Within two weeks, Peter would have a tendonectomy (in which they cut a tendon to increase the angle in which the legs can spread) and placed in a petrie cast. 

 

Before the appointment, we had packed headphones and queued up a TV show for Peter to watch while the adults discussed the nitty gritty. Thank goodness we did, because when Dr. G. gave us the news, Sam and I could not hold back our tears. 

 

Peter would be in a cast or brace and in a wheelchair for a year or more. He would not have a “normal” kindergarten or childhood. He would not be able to go to friends' houses for sleepovers. He would not even be allowed to swim. He would be at another’s mercy at a staircase. It was a huge blow. Frankly, the worst possible outcome other than a femoral osteotomy surgery (Though with the osteotomy, the casting and bracing period is far shorter–which is a huge benefit and preferred over our situation by many.). We were devastated. 

We spent the next two weeks in a mad dash of activity. I researched all I could about modifying our split-level home to accommodate our new situation. We went to IKEA with Peter and bought a new bedframe and mattress so he would fit in his cast and sleep as comfortably as possible. We talked to the hospital about carseats and which would work in our cars. We swapped cars with our in-laws so we would each be able to drive with him in both my husband's and my vehicles. We figured out how he would use the bathroom at home and out and about. We worked with his preschool to figure out logistics. I stockpiled sedentary games and activities.

 

We repeatedly hyped up Peter about the “cool cast” he would be getting that all his friends could sign! And “you can even pick the color!”. We swam as much as we possibly could. We asked if he had questions and did our best to be honest. 

 

Sam and I would hold each other at night and cry. It was all so much.

The day of Peter’s surgery went off without a hitch. We had told him ahead of time all that would happen, so he wasn’t surprised or overly scared of anything that day. He felt a little sick the rest of the day after his “sleepy gas,” but he perked up by that night and adapted fairly quickly to his legs in the V position. He did experience some cramping and severe itching, but he adapted quite quickly.

 

To Sam’s and my surprise, the surgery and casting felt easier to us than the anticipation and preparation for it. Now that the die was cast and Peter’s situation solidified, we felt a sense of purpose and duty that grounded us. The worst case scenario was our reality. We no longer lived in fear of it. We just dealt with it. And we all did extremely well compared to the restriction of activity we were forced to employ before. 

 

Note- Peter was only about 35 lbs at this time and the cast 7 lbs or so. While it was awkward, Sam and I could carry him up the stairs and easily move him about as needed. He fit through a doorframe in his pediatric wheelchair with room to spare. When children are cast when they are older and larger, things become more challenging in these regards. We were extremely “fortunate” that Peter’s Perthes happened early in his life vs. later. 

 

The week of Peter’s surgery, I took off work. The two of us were out and about the following day getting used to our new situation and taking our mind off things. We went to a Spiderman exhibit at a museum. We saw a movie. We went to the library. We had fun as we both figured out how his wheelchair worked and toileting. People were nice to us, though adults would sometimes stare and say insensitive things. (Kids were way better. They’d look and go about their business or ask outright. Adults wanted to figure it out which usually meant overt staring.) We adapted.

 

After five weeks the cast came off and the brace went on. Peter turned six in the brace. In most aspects, the brace was better. Peter could bathe in a bathtub. He could take it off to go poop. He could scratch an itch which was huge. And he could walk/be out of it for four hours a day! 

 

In some regards, the brace was more challenging. It caused rubbing that we needed to troubleshoot at the prosthetic’s clinic. Peter would also give us resistance when putting the brace back on and was more vocal about complaining. “Why do I have to put this on now? I didn’t have it on before!” “Mom, can I take my brace off? No? Why not! That’s not fair!” In his eyes, the brace felt more optional and to us, sometimes, more situational. And when he was out of it, we were right back to “Peter, no. You can’t XYZ.” Even though his legs had atrophied and his gate was now abnormal, he wanted to jump around and play like any other six year old. 

 

He started kindergarten in a brace and wheelchair, and he is still in both at this time.

 

As of today (May 2024), about a year later, Peter is still braced but has eight hours out of it a day.

 

(Peter was diagnosed February 2023.)