Jack’s journey
New Glasgow child coping after surprise lupus diagnosis
During the evening of April 19, John and Amber Guthro received an alarming phone call concerning their five-year-old son, Jack.
“I guess because of the joint pain we thought he might have arthritis, but he also had a rash so we weren’t really sure what was going on. We just knew that they sounded really urgent,” said Amber.
Joint pain, a nasty rash on his cheeks, and a level of lethargy that would concern any parent of a preschooler were all symptoms that caused them to reach out to their family doctor.
“He was initially diagnosed with Fifth’s Disease,” said Amber, referring to a fairly common childhood illness, which usually clears up within weeks.
But it didn’t. Instead of getting better, the joint pain was getting worse.
“He couldn’t even get out of bed in the morning. We had to carry him out of bed.”
The Guthros were referred to a pediatrician who took a sample of Jack’s blood on April 19. At 8 p.m. they received the call telling them to go to the IWK in Halifax first thing in the morning.
Jack would end up staying at the IWK for the next 23 days. During that time, he had a bone marrow test, heart scans, kidney biopsies and blood work.
“They thought he had tuberculosis, they tested him for HIV, and asked if we had recently travelled outside the country,” John said.
After all the tests were done Jack’s diagnosis emerged, and the results were surprising even to the team of doctors who worked with him.
Jack was diagnosed with lupus — an autoimmune disease which attacks a person’s tissues and organs. It is a chronic disease, so it persists for a long time and cannot be prevented through
vaccination or easily cured with medication. Instead, medication is used to treat the illness, making it more manageable, and improve the quality of life for those affected by the disease.
Jack’s diagnosis came as a surprise because lupus tends to be more frequent in individuals between 15 and 45, and, according to Lupus Canada’s website, is diagnosed in women nine times more often than in men.
“Typically, people think of those affected by lupus as women in their childbearing years, but we’re seeing more and more people being diagnosed with lupus,” said Lupus Canada’s executive director,
Leanne Mielczarek.
Lupus Canada is an organization which wants to increase people’s knowledge about the disease and to advocate for those who live with it. Lupus has traditionally been misunderstood and confused with other diseases. Because of this, people may be treated for diseases with similar symptoms while the real culprit goes under the radar.
What’s more, since lupus is a systemic disease capable of affecting any organ or tissue in the body, the symptoms will often vary depending both on part of the body being affected, and on the individual person being affected by it. “It can affect anyone at any time, and in any organ. We refer to lupus as a disease with 1,000 faces,” said Mielczarek in a phone interview. “How it looks from person to person can be different, which makes diagnosis and treatment trickier.”
Jack’s treatment had to be carefully determined. He was given high doses of the steroid prednisone in order to reduce inflammation in his joints and to bolster his immune system against the auto-immune effects of the disease. Over the last few months the dosage has been gradually reduced.
“We’re finally down to 7.5 milligrams, and next week he’ll be down to five,” said Amber. “They’re doing 2.5 at a time, and every time they drop it down he has a bit more pain.”
The synthetic steroid is there to bolster what Jack’s body produces naturally, and so he feels the lack of it when the dose drops and while he waits for his body to catch up.
Today, the family is back in their New Glasgow home, and Jack runs the length of the living room before jumping on to a couch like a gymnast. He has Band-Aids on
both shoulders from flu shots he received that morning. He’s used to needles by now, and he shows off the fresh Band-Aids by flexing his biceps — a fitting pose for a kid with great strength.