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A rare diagnosis: Dexter’s story

Last Modified: November 01, 2022

Women & Children, Diseases & Disorders

Dexter's story

An ill child can be overwhelming, but an unexpected disease diagnosis can turn your world upside down. The Welling family experienced just that when their son Dexter was diagnosed with a rare hormone disorder known as acromegaly. In honor of International Acromegaly Awareness Day, they are choosing to share their story in hopes of shining a light on this uncommon condition.

Early warning signs

In the spring of 2020 and the start of the pandemic, Carrie and her husband Tyler decided to work on potty training their then 3-year-old son, Dexter. “I was over changing diapers,” Carrie joked. “Besides, it seemed like a good idea since we weren’t going anywhere.” Initially, Dexter did well with potty training, but Carrie noticed that he often experienced bowel movement issues, spending at least 30 minutes in the bathroom.

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A month later, Dexter was still dealing with difficult bowel movements and, surprisingly, had grown an entire inch. Carrie and her husband didn’t think much of it at first, but between May and June, Dexter continued to grow, measuring another inch taller. “We assumed it was part of his normal growth and development pattern,” she explained. “Dexter’s dad is 6 feet 3 inches tall, so it didn’t seem out of place. We just thought he would be a tall kid.”

As summer faded into fall, Dexter still wasn’t feeling well. Dexter struggled with bouts of sporadic vomiting, random neck pain and flu-like symptoms in the months leading up to his fourth birthday. Trusting their instincts, Carrie and Tyler decided to get their son checked out by his pediatrician, Celeste Lopez, MD, PPG – Pediatrics. His x-rays came back clear, but Dexter still complained of stomach problems and neck pain. “According to all these initial tests, there was nothing wrong with him,” Carrie said. “But by the time Christmas had rolled around, our four-year-old had grown almost 7 inches and was throwing up every 2-3 weeks.”

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Dexter’s diagnosis

By February 2021, Dexter’s condition worsened. Unsure of what to do, Carrie and Tyler brought their son back to Dr. Lopez for another visit. “Since Dexter had been sick for so long, Dr. Lopez ordered an MRI to rule out the ‘scary stuff’ and any worst-case scenarios,” she recalled.

On March 17, 2021, Dexter had his first MRI. That afternoon, just hours after her son’s brain imaging scan, Carrie and Tyler received an unexpected call from Dr. Lopez. To everyone’s astonishment, Dexter had a pituitary tumor, or macroadenoma, roughly the size of an egg touching his optic nerve. “I was shocked and inconsolable as she spoke,” Carrie remembered. “But Dr. Lopez was great. She said, ‘I’ve already been in contact with Cincinnati Children’s Hospital. They’re going to call you in the next 15 minutes. Pack your bags and get ready to go.’” By the end of the day, Dexter was admitted, largely thanks to Dr. Lopez’s quick thinking and decisive action.

After three days at Cincinnati Children’s Hospital, Dexter and his parents finally had a precise diagnosis. He was suffering from pediatric acromegaly, also known as gigantism (when seen in children). It is a very rare condition that occurs when a benign pituitary tumor releases excess growth hormone into the body. These high levels cause a child to experience abnormal development and grow very tall. Left untreated, it could lead to severe health problems and complications as the child grows. Early diagnosis and treatment are crucial for this disorder.

With a definitive answer to their son’s health issues, Carrie and Tyler were able to move forward with treatment options for Dexter’s diagnosis.

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A path forward

A few months later, Dexter underwent surgery where a neurosurgeon successfully removed the tumor. Carrie and Tyler immediately noticed their son’s stature began to thin out, his facial features becoming less pronounced, and he no longer had pain or bouts of sickness. And while things are looking up, Carrie and Tyler are also focused on the long journey ahead, knowing that their son will have to live with this rare condition for the rest of his life.

“Honestly, I was a little blind-sided after Dexter’s surgery. I thought after the removal of the tumor, this would all be over, but that wasn’t the case, and it crushed me,” Carrie revealed. “Fortunately, we have a great support network of wonderful doctors, family and friends.”

With that unwavering support system, the Welling family continues to press on in hopes of finding a better solution for Dexter’s condition. This past April, they began working with the National Institutes of Health on possible drug trials and treatment options. Unfortunately, during Dexter’s initial appointment and workup, they found another pituitary tumor (macroadenoma), which meant another surgery.

In September, Dexter underwent his second resection. His recovery is going well, but Carrie and Tyler are anxious as they wait to hear the results of Dexter’s lab work post-surgery. They hope to see a decrease in his growth hormone production but are also preparing for their next steps if the numbers don’t come back in their favor.

At the moment, Carrie and her family are in the thick of it, piecing together the medical puzzles thrown their way. All the while, Dexter’s condition continues to progress and he grows too quickly, measuring 4 feet 5 inches at only five years old. Anyone walking a similar path dealing with a rare disease diagnosis can tell you it is a long and arduous road. It takes a toll on everyone involved, placing stressors on your life (professionally and financially), overall health and well-being. “Rare diseases are tough, but you must stay the course and fight for your quality of life,” Carrie said.

Moving forward, Dexter will require ongoing monitoring, treatment and medical therapy, but with the help of his care team, Carrie and Tyler are confident he will be able to live a full life. And with Dexter’s sixth birthday approaching, they were quick to reflect on the many blessings and positive aspects of Dexter’s health journey, forever grateful for Dr. Lopez and her team. “I don’t know where we’d be today if she hadn’t ordered the MRI,” Carrie said. “The amount of love this team has for Dexter is incredible, and anything we’ve needed, we’ve gotten their support. We could not ask for better.”

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