Boy Scout Gives Back After His Struggle With Rare Condition

The Pintuff family

When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.

As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.

When Aidan was 12 years old, his family moved to Washington. Just as it had done in the past, Aidan’s right jaw became swollen, red and painful. He had trouble chewing and using the right side of his mouth. This time, his family visited Seattle Children’s.

“When we came here it was amazing,” Aidan’s mother Tracie said. “The team jumped right in to try to find an answer.”

Finding an answer and the road to recovery

Little did Aidan know, it was just the beginning of what would become a long course of treatment for a very obscure condition. Before he was diagnosed, Aidan underwent a surgery and bone biopsy.

“It was scary at first,” Aidan said. “It was daunting to have a whole team of people working on me.”

When the results of his tests came back, the condition that had plagued Aidan throughout his life was given a proper name: Chronic Recurrent Multifocal Osteomyelitis or CRMO for short. CRMO is rare, affecting roughly one in 1 million people, though it may be going undiagnosed and be more common than researchers first thought.

The symptoms of the autoinflammatory bone disease can include severe pain, swelling, redness and even fevers. CRMO usually occurs in large bones like those in the legs, but Aidan’s case was uniquely confined to his right jaw. Unlike typical osteomyelitis, CRMO is not bacterial so it does not respond to antibiotics.

Aidan was referred to rheumatology by Dr. Mark Egbert, an oral and maxillofacial surgeon at Seattle Children’s who recognized the possible CRMO in Aidan’s jaw.

Aidan proceeded with a course of treatment under Dr. Youngdong Zhao, a rheumatologist at Seattle Children’s.  His treatment included taking medicines that strengthen the bone and weekly shots of methotrexate to help with bone inflammation.  He was also given NSAIDS to reduce inflammation and infusions of a drug that is usually used to treat osteoporosis.

The side effects to Aidan’s treatment were difficult, including deep bone pain and nausea.

“It can feel like the worst flu you’ve ever had,” said Zhao.

“It was really hard,” Aidan says. “It was to the point where I didn’t even like the smell of rubbing alcohol because I knew it meant I was getting a shot.”

In addition to the treatment, Aidan had to change his diet to mainly liquids.

“He had to be on a primarily liquid diet because chewing food may have broken the jaw since it was so fragile,” Zhao said. “We treated it like someone who has a fracture that needs repair.”

For a while after his diagnosis, CRMO kept Aidan off the soccer field as he tried to avoid being hit in the jaw. The Pintuff family wanted to do their research on CRMO, but even that proved difficult because the disease is so rare.

Being free of pain and scouting ways to give back

Aidan and his family deliver quilts to Seattle Children’s

Fortunately, the treatments used on Aidan, who is now 17 years-old, worked and he has been without symptoms ever since.

While he was undergoing his own treatment, Aidan was still thinking of others. As a part of moving toward earning the prestigious honor of being an Eagle Scout, he wanted to demonstrate his community involvement by doing what had been done for him when he was admitted to Seattle Children’s: handing out quilts to Seattle Children’s patients.

Aidan organized his scout troop, family and friends. Together, they made 35 blankets for hospital patients.

“He’s a great kid. I love seeing him in clinic,” said Zhao. “He’s got a big heart and is willing to contribute to society.”

“I love the fact that he took a bad situation and used it to help other kids,” said Aidan’s mom, Tracie. “It makes our family very proud.”

Aidan’s condition has improved well enough that he’s back on the soccer field playing his position as a defender. He shakes off the idea that he’s nervous about his CRMO flaring up, but his mother isn’t quite as care-free.

“Playing soccer makes me nervous!” she said with a smile.

Thanks to his treatment, CRMO has become somewhat of an afterthought and Aidan wants to take full advantage of his opportunities.

So what are Aidan’s plans for the future? He wants to go to Germany and get a bigger perspective on the world. Before he leaves the country, he also wants to complete his Eagle Scout designation and will be taking a 12-day trek through New Mexico to the famous Philmont Scout Ranch.

He is a driven young man who refuses to be sidelined by his condition and, if you ask his family, there’s little doubt he’ll achieve his Eagle Scout status.

“He still does what he loves to do and hopefully that inspires other kids,” said Aidan’s father “He doesn’t take things for granted. That’s what makes him Aidan.”