“He’s a difficult kid.” | Corwell Health

Sore back.

It’s hard for Brianna Kessler to believe that this is how a harrowing health journey began in January 2021 for her now 13-year-old son, Eizen Tetsos.

At that time, Breanna gives Eisen a pain reliever to make him more comfortable.

A few days passed and his back still hurt, but it wasn’t enough to keep Eizen away from his daily activities. Breanna dropped him off at school on Wednesday morning and drove to her job at a local diner near their home in Sturgis, Michigan.

Two hours later, Eizen called and told her to come and pick him up from school. His back was in excruciating pain, and his legs were aching now.

By the time Breanna picked him up, he was sweating in pain and could barely carry his bag to the car. Now, he was also experiencing pain in other parts of his body.

“It was the weirdest thing,” Brenna said. “I knew this was more than just a backache. I thought, ‘This is no good.'”

Unfortunately, she was right.

Uncommon diagnosis

They didn’t know it then, but Eisen was eventually diagnosed with a rare autoimmune disease called juvenile dermatomyositis, commonly referred to as JDM for short. It is an inflammatory disease of the muscles, skin, and blood vessels, and it usually causes muscle weakness. It affects about three in every million people.

On Wednesday afternoon, Breanna and Izen immediately visited his local pediatrician and at 4:30 p.m., the doctor called.

Eisen’s blood tests revealed that his creatine kinase levels were alarmingly high. He emails the results to Breanna and tells her to immediately take him to the emergency room and show them the results.

“I was dumbfounded,” she said.

The local hospital they visited that day took in Aizen – and since then, he’ll be in two hospitals and a rehabilitation center for nearly four more months.

As the days and weeks went by, Eisen’s creatine kinase levels fluctuated, but only trended upward. Meanwhile, Breanna watched as Eizen became increasingly weak.

“It got to the point where he couldn’t move,” Brenna said. “He couldn’t even roll over in bed. His muscles were collapsing for no reason. I didn’t know what to expect. I didn’t know what to do.”

Eventually, she said, Aizen got to the point where he struggled to swallow.

Doctors from the local hospital where Eisen was a patient consulted by telephone with specialists from Helen DeVos Children’s Hospital at Corewell Health. Exactly four weeks after his admission, Eisen was transferred to the Children’s Hospital.

There, he came under the care of a pediatric rheumatologist Elizabeth Kessler, MD. (Although they have the same last name, they are not related.)

She suspected juvenile dermatomyositis, and treated him as if he had it, but his condition baffled her and other experts.

“His case was unusual, as the majority of children with polymyositis have classic biopsy findings, in addition to the results of other investigations,” said Dr. Kessler.

“It was a rare symptom of a rare disease,” she said.

On the day Dr. Kessler met Eisen in person at the hospital, he was “very weak”.

“He was unable to sit up on his own or walk,” she said.

Brenna said that while he started treatment with a high-dose steroid he was on at work, it was a newer treatment, called intravenous immunoglobulin, or IVIG, that really helped. IVIG is a therapeutic treatment made from a pool of immunoglobulins (antibodies) from donors, which helps prevent the body from attacking itself and reduce inflammation.

“It was like a whole new ball game,” Brenna said. “He can actually sit up for a little bit… I’m finally starting to see a little bit of light at the end of the tunnel, and I think maybe there is hope and we can figure it out.”

In March, Eisen was discharged to Mary Free Hospital for Rehabilitation, where he continued rehabilitative therapy he had begun at the hospital, including walking with a walker.

“He would still be very, very tired and he was still very weak,” said Brenna.

Four weeks later, in April, Eizen returns home. He did outpatient physiotherapy four days a week and went to the local hospital once a week for IVIG and steroid treatment. He was also on multiple medications at home.

Breanna will never forget what happened one Saturday in May. Eisen, who was a very active and athletic child, asked to go watch his baseball team play while traveling. On the way, Breanna’s phone rang. It was Dr. Kessler.

I reached out to Lisa Ryder, MD, a pediatric rheumatologist and chair of the Environmental Autoimmunity Group at the National Institutes of Health, in Bethesda, Maryland. She is a leading expert in juvenile myositis.

“Dr. Ryder called her back right away on Saturday, and then Dr. Kessler called me,” Brenna said.

This was confirmation of the diagnosis they were both looking for: juvenile dermatomyositis.

“It felt a little bit of a relief that we finally got diagnosed,” Brenna said. “Now we can address the problem and work from there.”

Invest in his care

Dr. Kessler recommended eight rounds of chemotherapy for Izen at Helen DeVos Children’s Hospital.

“An overactive immune system was the cause of the severe inflammation in his muscles, and the chemotherapy was combined with additional medications to target his immune system,” said Dr. Kessler.

Before that, though, Breanna had another difficult conversation with her son: Chemotherapy might end his chances of having children biologically. Therefore, doctors offered him the opportunity to participate in a fertility preservation research study in Chicago. He decided to do so.

Brenna said chemotherapy came with its own challenges: hospitalization for an infection and later, a blood clot in his leg.

But the treatment turned him back into an energetic boy who was playing baseball and basketball again.

“From where it was up until now it was like a whole new ball game,” said Breanna.

He now has steroid treatment and IVIG every six weeks, and Dr. Kessler has blood monitors every two months. He is also undergoing two other immunosuppressive treatments, Dr. Kessler said.

She is pleased with his advances.

“I think the unique thing about Izen is that he’s really invested from the start,” said Dr. Kessler. “He knows his medications. He follows his labs. He asks questions. His understanding is more than I would expect for someone his age. The combination of him having a good understanding of everything, and then seeing him get better along the way is very satisfying.”

She credits the hospital’s coordinated care and multidisciplinary approach to its care, including neurology, hematology, infectious disease, and physiotherapy.

And, of course, the beloved nurses, including Jacqueline Coccolis, RN.

“Eizen and his mother are two extraordinary people,” said Jacqueline. “They have been on top of his care since the beginning. I have never met a child like Eizen, who is so involved in his care and ready to learn. He stands up for himself which is exceptional for a child of his age.”

She said that Eizen and Breanna exude positivity.

“They’ve been treated so much, and they handled everything with such grace,” said Jacqueline.

Breanna said she tried to keep life as normal as possible on everything.

“I never stopped our lives,” Brianna said. “We kept going. I had no choice.”

That means maintaining a busy schedule for her daughter, 17-year-old Bella, who plays travel volleyball and recently accepted a scholarship to play in college.

“You just have to focus and set your mind on what you want to keep going,” Brianna said.

She said that Eizen got back into sports, and went to summer camp with the help of his friends.

“I just want to make sure he has the best life possible,” she said. “I let him tell me what he could and couldn’t do. He’s a difficult kid.”

Meanwhile, they continue to partner with Dr. Kessler as she determines the next step in his treatment. While no one knows the cause and relapse is a possibility, they do their best to avoid it.

“We love her,” Brianna said of Dr. Kessler. “This whole team is amazing. For her to reach out and find other doctors to help her…she was trying to do her best for Aizen.”

So, they keep fighting.

“I don’t want our lives to be ruined,” Brianna said. “I want us to be able to destroy it.”