SIGEL, Pa. (EYT) — A local youth has been recently diagnosed with a rare chronic bone condition.

Nine-year-old Kelso Dolby was diagnosed with chronic recurrent multifocal osteomyelitis (CRMO) in September. His mother, Jessica Compton, is seeking to raise awareness of the disease.

According to the U.S. Department of Health and Human Services, chronic recurrent multifocal osteomyelitis (CRMO) is an inflammatory bone condition with symptoms which usually begin in childhood, that include recurrent episodes of pain and joint or bone swelling, with or without fever.

It is one of a number of conditions commonly known as “silent” or “invisible” diseases due to those who suffer from them having no obvious, visible symptoms.

Due to the very rare nature of CRMO, there is still only limited data regarding the best treatment options. Initial treatment most often involves non-steroidal anti-inflammatory drugs (NSAIDs). If NSAIDs are unable to control the pain, other treatment options include antirheumatic drugs such as corticosteroids, or blockers of the kind often used to treat rheumatoid arthritis.

Kelso Dolby, who is a fourth-grade student at Hickory Grove Elementary, began dealing with unusual pain, primarily in his backside, on September 4. The pain became more severe over the next day and a half, and the family sought medical attention at QCare Brookville. Kelso was sent for a Lyme disease test the following day, then on to Children’s Hospital in Pittsburgh after the results of his bloodwork were discovered to be severely abnormal.

The doctors at Children’s Hospital initially diagnosed him with an entirely different disorder, confining him to walking with crutches or riding in a wheelchair and limiting him to half days at school while they continued to investigate the results of his tests. Then, a follow-up appointment on September 17 turned Kelso’s family’s world upside down.

“When we first went in for the follow-up, he had an MRI, and they found something wrong. They were concerned about infection,” said Jessica Compton.

The doctors decided to do a bone biopsy, which required admission to the hospital where they tried to keep Kelso comfortable with fluids and pain management while they awaited results. A preliminary reading of the biopsy found evidence of infection, but the family still had to wait for the full results as well as a full body MRI to check for further inflammation.

The results of the full body MRI showed that Kelso did have inflammation in other bones, though the most severe inflammation was in his pelvis, primarily around the sacrum. The medical team then started him on a new medication to fight the inflammation while awaiting the final results of the bone biopsy. Unfortunately, the culture tests came back showing further infection.

According to Jessica Compton, the doctors currently expect Kelso to be on antibiotics for the next six to twelve months, and anti-inflammatory medication for the inflammation in his bones indefinitely.

“We’re really thankful for the doctors, and everything they did. They really researched it. We’re blessed to finally know what it is,” Compton noted.

Although the diagnosis and finding a medication that seems to have relieved the pain, Kelso’s future is still very uncertain.

“With this disease, it’s a day to day thing. He’s doing good right now, there’s some discomfort, but some days are good and some days are bad. It just varies a lot from day to day,” Compton said.

“It’s the constant worry about what’s next: what’s he going to be able to do or not do? That’s the scary thing. Will it go into remission or flare up again? How much is going to miss out on?”

Currently, Kelso is able to walk on his own, without the assistance of crutches, but his doctors have him limited on physical activity, due to the incision from the biopsy, as well as the infection and inflammation his body is currently battling.

“At open house last week, they had sign-ups for sports, and he wanted to do swimming, but he can’t right now because of the incision, and he wanted to do wrestling, but he can’t take that trauma to his body,” Compton noted.

Compton also explained that the incision and the resultant soreness, as well as the discomfort from the infection and inflammation, have made even day-to-day life more challenging as he tries to readjust to going back to school following his recent hospitalization.

“He is having problems adjusting to being back in school after being in the hospital in Pittsburgh for a week. He’s also having problems with sitting still in school because of the location of his incision being where he sits. We’re trying to have the teachers work with us, since this is part of the disease, but they’re really not helping.”

“One of the main things we have to look out for is increasing pain levels or cold-like symptoms, and we’ve explained to his teachers that he needs to be able to see the nurse immediately if he’s feeling worse, but I’m just not sure it’s being taken seriously.”

Compton also shared concerns about how other students are treating Kelso now that he has returned to school.

“He tries to do things, but can’t because of his pain, and now he is being picked on. Students are bullying him, saying he’s faking it,” she said.

Compton noted that the attitude his classmates have exhibited are common when it comes to those who suffer from silent/invisible diseases.

“To look at him, he just looks like a normal average kid. You can’t see it and people just don’t understand what you experience or go through,” she noted.

“He’s actually a really tough kid, he doesn’t even like to admit when he’s in pain. That’s how I knew it was bad when he actually complained that something was really hurting him.”

“When he got to meet Miss Pennsylvania, down at Children’s Hospital, he was confined to a wheelchair, but he absolutely insisted on standing up for a photo with her,” she noted.

“I really don’t want any special attention or anything, I just don’t want people judging books by their cover. And, I just want to reach out, so other families know they are not alone.”