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patient story

Shiloh Douglass

why pediatric rheumatology matters

As winter started to melt away into spring and the groundhog’s six weeks were almost up, instead of looking forward to new grass and blooming buds, Shiloh Douglass was aching her way through each day. “I had pounding headaches, body aches and a rash,” she remembers. “My doctor sent me to the emergency department at Dayton Children’s and they admitted me. For three days, everyone worked to figure out what was wrong and help me feel better.”

Turns out that Shiloh had vasculitis, an inflammation of the blood vessels. Her body’s own immune system turned on her, causing the walls of the tiny tubes carrying blood to become swollen and irritated. 

In Shiloh’s case it was the small blood vessels in the skin that were impacted, a version called Henoch-Schoenlein purpura (HSP). It causes a distinctive rash and can also cause problems in the kidneys and intestines.

“I feel very lucky that Dayton Children’s had a pediatric rheumatologist,” says Shiloh.  “My symptoms were so common that it could have been anything. Having a doctor right there at my bedside who specialized in inflammation really helped get answers faster.”

In fact, Dayton Children’s has two pediatric rheumatologistsDustin Fleck, MD, and Anne McHugh, MD, who started on the very same day in 2019. That’s a real feat when you consider that there are fewer than 420 board-certified ones practicing in the country right now. In fact, nine states don’t have any!

“It’s nice to have two of us because it really allows collaborative thinking and a second opinion is always just a few steps away,” says Dr. Fleck, chief of the division of rheumatology.

“Collaboration across specialties is also a big part of what we do because inflammation can happen anywhere in the body, impacting organs, tissues and bones,” says Dr. McHugh. “Many of our patients start in sports medicine or orthopedics, because of the joint aches, and end up with us when another cause can’t be found.”

One of the most common diseases that can start as an orthopedic concern is arthritis – yes, arthritis in kids! It’s called juvenile idiopathic arthritis – the idiopathic just means no one knows what causes it.

“The symptoms come on slowly and aren’t that obvious at first; joint pain, stiffness and swelling,” says Dr. McHugh. “We do a hands-on exam with some diagnostic testing to find that inflammation. Even though it’s a disease that will be with them for life, we have really effective treatment options and outcomes are normally really good, especially if it’s caught early.”

Having two pediatric rheumatologists suddenly became very important in 2020 when an inflammatory response to COVID-19 began happening in children.

It became known as MIS-C, or multisystem inflammatory syndrome in children.  Different parts of the body can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes or gastrointestinal organs. It’s very similar to another illness treated by rheumatologists, Kawasaki disease.

Oddly enough, Dayton Children’s has always had a proportionately higher number of cases of Kawasaki disease, and also MIS-C when COVID-19 hit. There were 42 kids who developed MIS-C from May 2020 to June 2021. 

“We talk to bigger institutions across the country and they are shocked – they may be four times our size and didn’t have that many cases,” says Dr. Fleck. “So far, all our kids have recovered very well from MIS-C. We are glad we are right here, so we can watch them closely to make sure there are no long- term effects.”

“Care can wind up being really fractured if you have an inflammatory disorder and don’t have a pediatric rheumatologist nearby,” continues Dr. Fleck. “Because many of our patients need to see other specialists, having us here really helps coordinate that flow of care, keep communication going and get them in fast if they have a flare-up. Families have been very grateful to be able to bring all their care home to Dayton.”

For Shiloh, treatment with steroids put her in remission. By summer’s steamy sun, she was ache-free and back to her active lifestyle, working out and planning a college career majoring in criminal justice. “I feel good now, but I know that if I start to ache again, I can come right back here and Dr. Fleck is ready to see me.”

Why pediatric rheumatology matters:

Kids have open growth plates. Inflammation over time can damage the places where bones lengthen. Bones can end up growing faster than they should, leading to one leg longer than the other, and knees can become wider. Damage can prematurely close growth plates, stopping growth altogether.

Kids’ bodies aren’t fully developed. Inflammation can cause lasting damage to still developing bone and tissue. In kids, bones are still solidifying so there is still a lot of cartilage. Connective tissue hasn’t fully matured.

Kids metabolize medicine differently. Medications have different side effects in kids and require different dosing.

We see a lot. What may be a pretty common disease for pediatric rheumatologists may be rare in the adult world, so kids benefit from that expertise.