Discovering Perthes - One Mothers Story

Discovering Perthes - One Mothers Story

On October 31st 2016, Halloween, our sweet ‘Little Pony’ and her brothers took to the street to trick or treat. Most children, except for those littles who can’t keep up (like our youngest son) run door to door in their costumes as they bob down the street. But, for some reason, our daughter wasn’t. She was slow. She was walking with a limp. I wasn’t sure if she fell and hurt herself earlier that day, we stopped by a few houses before returning back home. What could possibly keep this Pony from trotting down the street along with everyone else? We weren’t sure, but the following day it continued. And the day after that. And, you guessed it, the day after that.

A trip to the doctor led to the conclusion of what was believed to be transient synovitis. Basically, a virus was leaving her body and was trapped in a joint; causing stiffness and limping. That sounded reasonable, it would last for a few weeks. In December, the limp returned. Again, in January, from time to time as well. We had blood work done; no sign of lyme, lupus, white and red blood cell count all within normal range. The x-ray came back all clear. There didn’t seem to be a tremendous amount of pain, but it was difficult for us to watch and not know what was wrong or how we could help. Her gymnastics teacher pointed out a possible leg length discrepancy. We considered this, it did appear to be the case and certainly that would cause a limp. So, we did what we could to make sure she was safe and kept a close watchful eye.

Spring ahead to March, Kaelan is sent home from gymnastics. The teacher was concerned about her gait. And when I saw her walk in the door that day, I immediately was as well. It was as if her leg was disconnected from her body and she was slowing dragging it behind her, in excruciating pain. This was severe and we needed help ASAP. We went to the Pedi, picked up a copy of her “completely clear” x-ray, and frantically started calling hospitals and specialists. Tensions were high and we were scared. What was wrong with our baby girl?!
With pleading and prayer, we were able to secure an appointment with Children’s Hospital and be seen by a specialist within 2 days. I’m still grateful for that moment.

The doctor was running behind and I was calm as a cucumber on the outside, but having a panic attack on the inside. Within moments of him walking into our room, he gave us our diagnosis….”it’s right here, on the x-ray”.

We listened, learned, and proceeded to ask lots of questions about Legg-Calve-Perthes Disease, also known as LCPD or simply, Perthes. Which is why you are here and well know; the head of her femur is no longer receiving blood supply. Blood gives life, and without it, the bone will die. Thankfully, our bodies reproduce new cells, blood supply, and can heal themselves in amazing ways. Her body, like all other children with Perthes, will do the same. She has a good prognosis due to her age and size. But there are no guarantees. Perthes can live with you for your entire life and be painful. Or require multiple surgeries. Or simply grow out of it. Or live a life with arthritic pain in the hip. There isn’t a one size fits all for this childhood disease.

For now, we live a modified life with Kaelan. She has progressed into Stage 2 and has more painful days, some at nighttime on those active days. About 50% of her mornings are spent in pain upon waking. We have administered several doses of love, hugs, encouragement, espom salt baths, and reminders to relax on the running, jumping, and kicking (try that on an extremely active child with 2 brothers). And, for the rest, stay tuned. Our journey is just getting started.

Facebook Comments

One Response

  1. Our daughter was 8 when she got Perthes. Last february she got her big surgery. This march she will have her second. Be strong!

Leave a Reply