Teen suffering from arthritis gets a little help from his friends

Walk to Cure Arthritis is May 13 at zoo

By: Nick Mordowanec | C&G Newspapers | Published May 10, 2017

FRASER — When Matthew Dantes was 9 years old, he started to experience physical ailments most children his age couldn’t comprehend. Today, Matthew, 18, has juvenile rheumatoid arthritis.

The gamut of aches, pains, joint stiffness, rashes, fevers and difficulty walking originally confounded doctors. Matthew’s mother, Christine Dantes, said her son was misdiagnosed for three years because doctors couldn’t connect a 9-year-old’s symptoms with a particular disease.

“A lot of doctors don’t know what this disease looks like on a child,” Christine Dantes said. “That is the main problem we had with Matthew. He was misdiagnosed because he didn’t present the classic symptoms that an adult with arthritis would.”

One pediatrician told Matthew’s family that he was just suffering from growing pains, adding that joints would be red and warm to the touch — or even swollen — if the condition was more serious.

Now, none of his joints get visibly swollen. Only his knees do.

Following the pediatrician’s diagnosis, the family searched for more answers. Matthew was tested for muscular dystrophy by a pediatric neurologist. Christine said the neurologist told the family that Matthew suffered from a case of cerebral palsy that was never properly diagnosed as an infant.

An orthopedic surgeon followed. Christine said the surgeon serial-casted Matthew for three weeks, due to being convinced the pain and stiffness were caused by tight heel cords.

“The real problem was the arthritis was now in his ankles and serial casting literally froze them in that position,” she said. “By the time he got out of the casts he could barely walk and was in extreme pain. He was told by kids that he walked like Frankenstein.”

Even after years of physical therapy, the pain worsened. He couldn’t run or play with the other children. When he tried to join a soccer team, the coach asked if he had clubbed feet due to how he walked and ran.

After being continually misdiagnosed by a variety of medical professionals — including being suggested to test for both lupus and leukemia — Matthew could barely get down the stairs at home due to his knees not being able to bend.

“It was heartbreaking as a parent to see your child slowly lose all the things that brought them joy,” she said. “He was in constant pain and it really robbed him of a big part of his childhood.”

After years of reading and researching the possible cause of her son’s physical discomfort, Christine was the one who made the correct diagnosis: Her son had arthritis.

She and Matthew visited a pediatric rheumatologist, where blood work, an inflammation panel and an MRI were performed. Days before his 12th birthday, it was confirmed he had juvenile rheumatoid arthritis. Though by that time, years of incorrect medical opinions created joint damage and contractures that were irreversible.

Matthew had permanent limitations. Christine said her son has good days and bad days, and then some really bad days. He suffers from arthritis in his knees, elbows and ankles; pain and stiffness are in his wrists, fingers and hips.

There was a hope he would enter medicated remission, but that dream faded this past February, when he had an arthritic flare and was simultaneously diagnosed with Crohn’s disease.

It’s believed that Crohn’s occurred after Matthew started taking a biological drug called Enbrel at the end of last summer. It was explained that patients who take Enbrel for arthritis are at risk of side effects of inflammatory bowel disease. Now, it’s another thing for Matthew to endure.

“Many people don’t realize that arthritis is not just an old person’s disease, and it’s not just the pain and stiffness that is a daily struggle,” Christine said. “The side effects from these drugs are real, and so are the risks that come with taking them.

“It’s heartbreaking as a parent to wonder what kind of future your child is going to have. I worry, will the damage to his body be from the arthritis, or from the drugs he has to take to control the disease?”

 

Walking in solidarity
Matthew’s condition affected his family and friends in a profound way.

Christine said Matthew never wanted to come across as a victim, and he hates being the center of attention. He doesn’t even like bringing up his ailments, she added, or talking to the media.

Bringing awareness to the issue is important for him, however, and his old school has provided a positive avenue for Matthew to feel endeared while simultaneously helping to fight the diseases that literally cripple his body.

On May 13, at the Detroit Zoo, the 2017 Detroit Walk to Cure Arthritis will take place. As of press time, 17 friends and former classmates of Matthew’s at the Arts Academy in the Woods in Fraser were scheduled to walk in the event.

Christina Martin, parent liaison at Arts Academy in the Woods, is also a longtime friend of Christine Dantes. Martin’s kids grew up with Matthew. When Dantes told Martin that Matthew — who normally walks every year — possibly wasn’t going to make the event, she took matters in her own hands.

She began to raise funds, sharing information through Facebook and the Arthritis Foundation. Money was raised for Arts Academy students participating in the walk, including bags filled with special items.

Now, there are approximately 13 walkers and four backups as part of the group “Movin’ for Matthew.”

“Just this past year things have really been tough,” Martin said. “(Matthew) was going through so much. I thought it would be kind of a cool idea for us to do it in his name.”

After losing 20 pounds and spending nearly his entire second semester of college homebound, Matthew’s inflammation is being properly controlled through medication. He’s on high doses of prednisone, which is temporary, and a biological drug called Humira.

“We are hoping his medications continue to keep his inflammation down,” Christine said. “If they do, and I really hope they should, Matthew will be able to participate in the walk.

“I don’t want to mislead anyone and make them think that Matthew is worse than he is right now. He is definitely doing better and whether or not it stays that way is to be determined, but right now we are counting our blessings.”

For more information on the walk, visit walktocurearthritis.org.