Today, you’ll find little Cason Warren playing football and matching his older brothers step-for-step – but a few months ago was a different story.
Lindsey and Mike Warren thought they had the “parents of boys” thing down pretty well by the time Cason, their youngest of three, came along. When Cason was just a few months old though, they noticed he wasn’t gaining weight. They went on what felt like a roller coaster ride trying to find a formula that would work for him, but his diarrhea and stomach pains weren’t subsiding. That’s when they met Dr. Narendra Vadlamudi.
The answer to his tummy troubles
“I can’t say enough nice things about Dr. Vadlamudi. Here we were coming in without having issues with our other children and this one was only 4 months old,” said mom, Lindsey. “Dr. Vadlamudi called me at night to make sure we had the right formula. He was very thorough trying to figure out what was next since Cason was so young. He really cared.”
Lindsey got to know the gastroenterology nurses well throughout the process too and took comfort in knowing she could call or message them with any concerns and they’d get back to her quickly. When Dr. Vadlamudi diagnosed Cason with ulcerative colitis at 6 months of age and they finally settled on formula and medications his sensitive tummy tolerated, the Warrens breathed a sigh of relief.
Making new friends at CHoR
About a year and half later, Cason threw them for another loop. His left eye started drooping, his facial muscles were weak, he wasn’t eating well and he hadn’t started chatting the way his brothers had by the time they were almost 2. Their pediatrician referred them to a pediatric neurologist. Knowing they could count on their friends at CHoR, they scheduled an appointment with Dr. Amy Harper.
Dr. Harper got a detailed history from the Warrens and did a physical exam and thorough testing to determine the cause of Cason’s symptoms – myasthenia gravis, a rare autoimmune neuromuscular disease caused by antibodies that disrupt the communication between nerves and muscles. Though the diagnosis was scary, the Warrens appreciated Dr. Harper’s knowledgeable and comforting approach in finding an answer and working to develop a plan moving forward.
“As is often the case in children, Cason’s myasthenia symptoms were not recognized initially. His blood test confirmed what I suspected at his first neuromuscular visit,” said Dr. Harper. “Treatment for myasthenia can be a bumpy road, especially in Cason’s case with his GI and eye issues. His sensitivity to light made exams sometimes challenging, but this was overcome with a little creativity!”
The best care for Cason
Dr. Harper prescribed medications to manage Cason’s symptoms by increasing the chemical that helps nerves and muscles communicate. She also collaborated with Dr. David Lanning, co-surgeon-in-chief and together they recommended surgery for the best outcomes long-term.
“While Cason’s medications were partially controlling his symptoms, they were causing significant side effects. The best long-term treatment and only chance to be cured of his myasthenia gravis was surgical removal of his entire thymus gland,” added Dr. Lanning.
A total thymectomy is traditionally done by opening the chest through the sternum, which typically means a prolonged hospital stay and recovery given the weakened nature of patients with myasthenia gravis. However, Dr. Lanning removed Cason’s thymus gland this past September in a procedure using the da Vinci surgical robot and just three tiny incisions.
“My husband and I initially wanted to put surgery off. It’s just something you never want to do,” said Lindsey. “Dr. Lanning spent a lot of time explaining things to us. He showed us pictures, and he updated us throughout the surgery. The care he gave – he’s just an amazing surgeon.”
Busy boy, big future
Cason was out riding his bike the day after surgery and hasn’t slowed down since. He loves painting, puzzles, playdates with friends, “doing homework” with his brothers and throwing a football with anyone who’s willing. He’s even having football-themed fourth birthday party later this month, complete with a football cake. He’s also a big fan of cuddles with Mom.
Though he’s past the big hurdles, Cason’s journey isn’t over. He continues to take medications for both the myasthenia gravis and ulcerative colitis and comes to the Children’s Pavilion for infusions every four weeks. Now that his thymus gland has been removed, the team hopes to begin tapering him off some of the medications soon.
“If you had seen him before, he was very thin and his eyes were droopy. Now, he’s gained weight, he’s talking non-stop and there are no more eating issues or diarrhea,” said Lindsey. “He’s a typical 3-year-old. He’s always into something and once his feet hit the floor, we’re going all day.”
Lindsey and her husband are proud of Cason’s strength through all the obstacles he’s faced in his first few years of life. There was a time they thought he wasn’t going to be able to do all the typical kid things. Now, they’re anxiously anticipating what lies ahead for Cason, including hopefully starting preschool in the fall and doing all the other fun activities he sees his big brothers doing. And they’re grateful for their CHoR team helping them get there.
“We loved Dr. Vadlamudi from the start and then Drs. Harper and Lanning were just as incredible. All three have given Cason excellent care.”