A serious medical mystery has sent a Canadian family looking to the United States for answers as to the cause of their child’s baffling condition. Deagan Clavette has been having allergic-like reactions to what is best described as “almost anything” for most of his short life and no one is able to understand why.
The problem presented itself only five days after Deagan was born when he stopped breathing. At six weeks, respiratory distress saw him medevaced to the Stollery Children’s Hospital in Edmonton, Alberta. He was medevaced to Stollery for a second and final time at seven months for anaphylaxis and Deagan has remained at the hospital ever since.
Deagan’s condition is best likened to allergies, but doctors aren’t convinced that’s the root problem. Although many of the attacks he experiences match known allergic reactions—anaphylaxis, hives, swollen eyes and lips, and rashes—not all fit this pattern. Deagan has experienced fainting spells, loss of consciousness, vomiting, and even shock. He requires 24-hour supervision and at one point went through seven EpiPens in a single day. Unable to tolerate food, his diet consists of a hospital formula delivered through a feeding tube.
Testing has so far confirmed that Deagan has at least 25 different allergies but these are considered symptoms of the underlying condition. The most likely culprit so far is some variant of mast cell disease, a condition where the mast cell—a type of white blood cell—can’t function properly and begins triggering reactions with or without being provoked. Although treating Deagan for MCD has helped improve his condition, none of the normal tests for the disease have yielded definitive results.
Deagan’s mother is grateful for the care her son has been receiving, but believes he can’t survive without a proper diagnoses and management plan. To that end, the hospital is working to get a teleconference with the U.S. National Institute of Healthcare in Maryland in order to bring their expertise in on the matter. There is also work being done to figure out which jurisdiction or person would end up paying in the event that Deagan needs to be brought to the U.S. for testing or treatment.
Deagan, for his part, is persevering through all of this. He remains a curious explorer like most toddlers and enjoys books, walking, and playing. Hopefully a proper diagnosis can emerge so that he can begin to experience life outside of the hospital walls.
Sources for Today’s Article:
Kyle, K., “N.W.T. Family Still Waiting for Diagnosis of Toddler Son’s Allergic-like Reactions,” CBC News web site, January 26, 2016; http://www.cbc.ca/news/canada/north/deagan-clavette-edmonton-hospital-1.3419570.