Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

Searching for a diagnosis

Michelle wasn’t overly worried either, but she started to track what was going on to see if there was any pattern – a particularly challenging feat, because she was recovering from a traumatic brain injury at the time. Whenever Carson’s cheeks or gums became discolored or swollen, Michelle snapped a photo and added it to a Google drive with dates and notes. “If I didn’t write things down, I just wouldn’t remember,” says Michelle.

After nine months of Carson exhibiting on-and-off symptoms, Michelle decided to seek help from specialists at Boston Children’s Hospital – the same place where Carson was treated for hip dysplasia as a baby.

At first, the otolaryngologist wasn’t sure what was causing Carson’s issues. “We had baffled yet another doctor,” says Michelle, “but I knew if anyone could figure out the problem, it would be Boston Children’s.”

Could it be Crohn’s disease?

The doctor called Michelle within hours, asking if anyone in Carson’s family had Crohn’s disease — a chronic inflammation of the intestinal tract. She answered “no.” He let her know that the Inflammatory Bowel Disease (IBD) Center would take over Carson’s case.

Michelle didn’t panic. “It wasn’t a life-or-death situation. I just figured we were going to stump someone else.”

A week later, Carson was seen at the Boston Children’s IBD Center. After reviewing Michelle’s photos, gastroenterologist Dr. Michael J. Docktor observed Carson and suspected he either had Crohn’s disease or orofacial granulomatosis (OFG), a rare chronic inflammatory condition of the mouth highly associated with Crohn’s disease that often progresses to the bowel. A colonoscopy would help distinguish the two and help provide an answer.

Michelle was careful not to jump to conclusions. “At that point, I didn’t want to know anything about Crohn’s. Nobody knows what’s coming tomorrow, so I don’t worry about what I don’t know.”

Learn more about Dr. Michael J. Docktor in the video below.

Based on the results of the colonoscopy, Docktor confirmed that Carson had OFG, but remained vigilant for the possibility of it advancing to Crohn’s disease. He discussed the condition in depth with the Domeys, and went over the treatment options. “Dr. Docktor is so confident and he really cares. He sees the emotional and psychological side of the patient,” says Michelle. “We loved him right off the bat.”

Parents + doctors = partners in care

Five years have passed since his diagnosis, and 11-year-old Carson feels in control of his condition. He takes biweekly injections of an immunosuppressant to reduce the signs and symptoms of what has evolved to become Crohn’s disease, as predicted.

Though he still has flares, they are few and far between, especially when he gets adequate rest. “It’s up and down, so we take it as it comes,” explains Michelle. “It is a little bit scary, because there’s no cure, and the medication opens Carson up to illness and infection.”

Carson Michelle Domey Crohn's OFG

Carson checks in with Docktor, rheumatologist Dr. Fatma Dedeoglu and other specialists in Ophthalmology and Otolaryngology every few months. Michelle – now a member of Boston Children’s Hospital’s Family Advisory Council –  still prepares beforehand for every doctor’s visit. “I try to make the most of the time we have with a doctor by going in with concrete information and questions,” she says. “The techniques I learned during my own rehabilitation work really well for all parents managing a child with a chronic illness.”

Tips-for-Parents-of-Patients

Carson for president!

Despite the challenges, Carson has found every upside to managing a chronic medical condition, including using it as an opportunity to exercise his political voice. “Having OFG gives me an opportunity to educate my classmates about Crohn’s,” he says. “I tell them about my struggles and what I can do to help myself. They’ve been very understanding.”

Carson also raises over $15,000 each year for the Boston Children’s Hospital Eversource Walk and just last month, he traveled to the Massachusetts State House to make his case for expanding telehealth coverage. “It felt good to be able to have an impact and to make a difference in others,” beams Carson.

Michelle, Docktor and his “dream team” are there for Carson every step of the way on his road to success. “I guide Carson, but I don’t know what it feels like to live in his body every day, so he’s in control,” says Michelle. “It’s hard as a parent to surrender that power to our kids, but we’re not always going to be around to help. As president, Carson certainly won’t have me there all the time to tell him what to do.”

Learn more about the Boston Children’s Inflammatory Bowel Disease Center and how to request an appointment.