When I asked my 13-year-old son, Charlie, what I should write about this week, his enthusiastic response was, “Kidney stones!” And it turns out, he was spot on. My husband Jason and I are parents to seven wonderful children, including three—Max, Rowen, and Charlie—who have Duchenne muscular dystrophy (DMD).

A Painful Discovery

Our first encounter with kidney stones occurred last spring during a clinical trial appointment for Max. He suddenly experienced excruciating pain, and luckily, we were at the hospital where doctors quickly administered an ultrasound. It confirmed our fears: Max had a kidney stone.

I was astounded. When I inquired how this could happen, our neurologist explained that kidney stones are relatively common in older boys with DMD. Factors like dehydration, limited mobility, and the use of corticosteroids all contribute to potential kidney issues. This revelation was particularly pertinent for Max, who is no longer able to walk.

Keeping hydration levels up has become a daily challenge. I ensure each of my boys has a full water bottle and even installed cup holders on their power wheelchairs. Despite my relentless reminders to drink water, I often get eye rolls in response.

Charlie’s Struggle

Fast forward to October when Charlie started experiencing back and side pain. Initially fearful it might be appendicitis, we rushed him to the doctor after he vomited while trying to give a urine sample. Feeling better afterwards, we later realized this episode might have helped dislodge his kidney stone.

However, just last weekend, the pain returned. It was a long night filled with concern as he expressed discomfort while wanting me close by. Eventually, I fell asleep next to him, praying that he’d feel better by morning. To my relief, when I woke up, Charlie declared he felt much improved. A little later, I heard an excited cheer from the bathroom—he had passed a kidney stone!

At first, I was skeptical; aren’t they supposed to be too small to see? But Jason encouraged him not to flush, and we rushed to inspect. Sure enough, a tiny stone lay at the bottom of the toilet bowl, proving that Charlie knew what he was talking about.

Taking Action

In the wake of these episodes, our sons are now undergoing 24-hour urine tests and ultrasounds to help diagnose kidney stone risks. We've added a urologist to their care team, which has given us a renewed sense of confidence in managing these challenges.

With three kidney stone experiences under our belts, we feel more equipped to recognize the signs and symptoms early on. Most importantly, we’re taking proactive measures to boost their water intake in hopes of preventing future occurrences.

If you or someone you know has faced the dual challenge of kidney stones and DMD, I’d love to hear your experiences and any tips you might have in the comments below! Together, we can bring awareness and support to this aspect of living with Duchenne muscular dystrophy.