Colorado girl finds treatment she needs at UI Stead Family Children’s Hospital

When Madison Villaverde was diagnosed with chronic recurrent multifocal osteomyelitis (CRMO) in the third grade, her mother, Robin Villaverde, took to the Internet to research the rare disorder and search for support groups.

She didn’t realize her search would lead them nearly 800 miles from their Thornton, Colorado, home to University of Iowa Stead Family Children’s Hospital in Iowa City, Iowa. 

Through her research, Robin discovered the work of Polly Ferguson, MD, UI Stead Family Children’s Hospital’s director of pediatric rheumatology. Ferguson specializes in CRMO treatment and research and is a leader in the field.

“We came to UI Stead Family Children’s Hospital because Dr. Ferguson is the top doctor in the country for this disorder,” Robin says. “We met a lot of people in online support groups and her name just kept coming up.”

CRMO is a rare autoinflammatory disease that mostly affects children, occurring in one out of every 1 million children. With CRMO, bones have painful lesions and patients experience recurring episodes of joint pain and swelling. Symptoms typically appear in childhood but may not appear until later in life.

Madison was in first grade when she first told her parents, Robin and Felix Villaverde, that her legs hurt. Though the pain was noticeable, Robin says her daughter was still able to do what first-graders do: she ran around outside, rode her bike, and played with her friends.

By the time Madison was getting ready to start second grade in 2016, the pain had intensified, especially at night. Robin and Felix took Madison to her pediatrician, who sent her to an orthopedic specialist. The specialist initially said Madison was experiencing “growing pains,” but her parents weren’t convinced their daughter’s pains could be so easily dismissed. They took her to other doctors and physical therapists trying to get answers. About a year later, a specialist in Denver, Colorado, diagnosed Madison with CRMO.

“She had several MRIs (magnetic resonance imaging) throughout that year, and one right before third grade started really showed the lesions on her legs,” Robin says. “That’s when they knew.”

Ferguson sees CRMO patients from all over the country. She says the diagnosis is one of the hardest parts of treating CRMO.

“That’s half the battle, finding a doctor who knows what it is and then knows how to treat it,” she says. “As we do more research and more doctors are learning about CRMO, our goal is to have more places in the country for patients to be treated.”

Once the diagnosis was made, Robin says the family started talking about treatment options with the Colorado specialist and realized the treatment they needed wasn’t available in their home state. That’s when they decided to come to UI Stead Family Children’s Hospital.

“There are lots of ways to treat CRMO, some of which are similar to how we would treat an older people with osteoporosis,” Ferguson says. 

One treatment regimen involves a monthly infusion of a bisphosphonate to help inactivate inflammatory bone cells called osteoclasts which results in less bone destruction. The first infusions typically have side effects “similar to having the flu,” she says. Patients go to a treatment center for the infusion and are sent home the same day.

“You ache, you get a fever, you just have an all-around feeling of being sick,” she says.

The other option – and the one which Ferguson and most patients prefer – is a high-dose daily infusion done over a three-day period every three months. For this option, patients are admitted into the hospital, where they have around-the-clock nursing care and supervision, and can be better monitored. They will still have the side effects, but those side effects are managed by the medical team and not left to the parents to deal with at home.

Madison received two three-day infusions– first in September 2018, then in December 2018 – and is now being monitored by her doctors back home.

“We thought worst-case scenario, Madison would miss two to three days of school,” Robin says. “We decided to come here – we arrive on a Friday and we are sent home on Sunday.”

Madison, now 10, says she hopes she won’t need more treatments and that her pain goes away, but says she’s still able to do the things she loves: she’s on a swim team, does gymnastics, and plays soccer.

“Her pain really has been constant for a few years now,” Robin says, “but that has never stopped her from doing what she wants to do.”

Ferguson says time will tell whether Madison will need more treatments.

“Some people need just one or two courses of this treatment and they don’t have any more problems,” she says. “We’ll just have to wait and see.”

UI Stead Family Children’s Hospital is home to Iowa’s only pediatric rheumatologists – doctors with the training and expertise to treat a wide variety of rheumatic diseases that affect the joints, muscles, spine, and skin. Some of these diseases include juvenile idiopathic arthritis, lupus, scleroderma (“hard skin”), and dermatomyositis, or muscle inflammation. For more information, call 1-855-543-2884 or visit uichildrens.org/rheumatology.