Wallaceburg’s Megan Krogman was a happy and healthy seven-year-old girl, enthusiastic about life. However, in June 2012, Megan’s health took an unexpected turn.
“It was scary,” Megan said about the entire ordeal. “I was really young when it happened. It always hurt to move … really, really bad.”
Megan’s mother, Crystal, said after many visits to the doctors, accompanied by emergency trips to the hospital, their family discovered that she was living with juvenile idiopathic arthritis.
“Megan was always a happy, healthy and great kid that just flew through life … everything went her way,” Crystal said.
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Before Megan’s diagnosis, Crystal said they took Megan to an ER in Chatham, where a pediatrician admitted her to the unit for dehydration.
She had a fever and pain that evening, but woke up feeling great the next morning, and was discharged with instructions to see their family doctor two days later, Crystal said.
An hour after they returned home, Megan was on the couch covered in a rash, with a return of the fever and pain.
Crystal said they saw the doctor two days later, and by this point, Megan was so sick and weak that Crystal had to carry her into the clinic.
The doctor sent them immediately to the local hospital where her fever spiked, and she was in severe pain.
They called the pediatrician, who immediately had her admitted back to Chatham hospital.
Crystal said he started doing blood tests, trying to figure out what was wrong.
The next morning, when some of the blood tests came back, he said the lab results were so concerning she needed to be transferred to the London hospital.
Megan stayed there for nine nights.
Crystal said she was started on indomethacin to decrease the inflammation in her body and was soon able to walk and function again.
They continued to test her for many different things, including a bone marrow aspiration for leukemia, which came back negative.
When Megan was discharged, the doctor said that she would continue to improve and that the virus that had attacked her body would be out of her system within six weeks, Crystal said.
However, in a few weeks the fever returned at least once a day and the rash appeared for several hours a day.
Ultimately, Megan was taken to the Hospital for Sick Children in Toronto and a team of pediatric rheumatologists examined her.
Finally, the diagnosis came: systemic juvenile idiopathic arthritis.
“It was a long time getting the diagnosis,” Crystal said.
After this Megan continued to have pain in her joints, mostly shoulders, hips, and ankles, as well as the fever.
The medication led to weight gain, which made her feel “ugly” – and her appearance changed so rapidly that people close to her didn’t even recognize her, Crystal said.
She became anxious, depressed, and only seemed to talk about her disease, making it very difficult to keep friends at school.
Her blood pressure rose as a result of medicine, putting Megan on medication for high blood pressure.
Crystal said another one of the side effects was mood swings, leading to Megan having terrible tantrums.
She was so angry and frustrated.
“It was like Megan disappeared and another child that I didn’t know took her place,” Crystal said. “I had to mourn for my daughter, as I thought she was gone forever.”
In May 2013, Megan started biweekly infusions of Actemra.
“This is really what got things under control,” Crystal said.
The IV infusions helped get Megan weaned off other medication, she slowly started to lose weight and her personality returned.
“She slowly became Megan again,” she said.
Megan, now in Grade 5 at Wallaceburg Christian School, said she enjoyed the “art therapy” in London while she was doing her infusions.
“We could go and I could colour, draw and I could do all sorts of stuff while I was waiting for my bed to be all ready. I made a bear mask … I would start a project and every time I came back I would work a little bit more on it.”
By December of 2013, Megan received a wish from the Children’s Wish Foundation for a Disney Cruise.
“Megan had to be in a wheel chair for a lot of it because she was in pain, but she still had a great time,” Crystal said.
Fast-forward to September 2014, and Megan was taken off of her IV infusions.
“It has been six months and at this point she is doing very, very well,” Crystal said. “We’ve also seen a naturopathic doctor who tested food intolerance because she was still having some pain.”
Crystal said they discovered Megan has an allergy to dairy, gluten and eggs.
“When she is completely dairy, gluten and egg free, she has no pain, she’s just a normal kid,” she said. “When she does have those things, she does have some pain, but is doing quite well.”
With systemic juvenile idiopathic arthritis, 50% of kids grow out of it by the time they are 18 or 20, Crystal said.
“The other half deal with it their whole lives,” she said. “However, with this new drug, Actemra, they are trialing with kids … it has only been in Canada for a few years. They are finding that a lot of kids that go on that med, if they respond to it quickly, they are often cured and they never get another flare up. So we do realize that Megan could get another flare up, but we are hoping and praying that this is the end of it.”
Crystal said financially, the Trillium Foundation covered half of Megan’s treatments while the other half was covered by a program through Roche, the drug company that makes Actemra.
Arthritis is the leading cause of disability in Canada and affects one in six Canadian adults, and over 24,000 Canadian children also suffer with the pain of arthritis.
