A Portrait of Childhood Pancreatitis

Henry does not remember the pain of his first pancreatitis attack, when he was two years old. The first attack he can recall occurred when he was five: “It happened out of the blue,” he recounts. “The pain was really bad.”

Now, Henry is thirteen and in eighth grade. He plays trombone in the school band. He also loves the outdoors and sports – baseball is his favorite. On Fridays, Henry has sleepovers with his friends, and they play Texas Hold ‘Em and Capture the Flag. He and his eleven-year-old brother, Doug, practice musical instruments together and play whiffle ball.

Few limitations indicate that Henry is any different from his peers. “I’m not allowed to do football, which makes me disappointed,” he says. “I also can’t eat as many things as other kids – no 2% milk or high fat stuff.” Also, his friends and family often provide special companionship or care: “When I’m in the hospital, my mom buys me Legos, a new book, or video games,” he explains. Friends visit and send him stuffed animals when he is sick. His brother knows the signs of an attack: “If I am in too much pain to get my parents, Doug tells them.”

Henry’s pancreatitis makes him part of a little-understood group. According to Dr. Mark Lowe, Professor of Pediatrics and Director of Pediatric Gastroenterology at Children’s Hospital of Pittsburgh, no figures exist to indicate how many children have chronic and acute pancreatitis. He says that between 100 and 150 children enter large children’s hospitals each year with acute pancreatitis, while children with chronic pancreatitis account for only around 10 to 15 admissions each year . Doctors and researchers know little about the causes or risk factors for childhood pancreatitis.

Kate, Henry’s mother, has experienced this lack of knowledge firsthand. “We’ve been lucky with the time and interest his doctors have shown, though we were never able to find a reason for Henry’s pancreatitis.” Recently Henry has had fewer attacks, and no one can explain that, either. “It’s unclear if he’s cured, or grown out of it in some way or if we are doing something to stave off the attacks. The worry is that we unknowingly stop doing something that is helping” she says. Henry says that he used to have attacks every two months and missed at least a month of school each year. He had a sphincterotomy, which stretched the time between the attacks to approximately every six months for about 3 years. Recently, the episodes have occurred even further apart, which may or may not have something to do with the antioxidants Henry has been taking for the last year or so. Henry, though, doesn’t seem bothered by the unexplained improvement: “I don’t know why it’s gotten better,” he states. “I think the doctors did something.”

Henry also accepts the attacks themselves. “Now they’re part of my routine,” he says. “It usually happens during the middle of the night. I wake up and the pain is really bad.” When he begins to feel pain, he takes Mylanta – he also has acid reflux. If the pain persists, Henry and his parents head to the hospital. There, they wait in the emergency room, usually from 10 p.m. until two or three o’clock in the morning. Nurses draw blood to differentiate a pancreas attack from a bad reflux attack. While in the hospital, Henry watches TV and reads.

But the waiting begins in earnest when he returns home. Henry estimates that he is confined to the house for three to seven days each time he has an attack. He finds this part of the experience especially challenging: although he tries to keep busy, he can’t always escape tediousness. “TV, computer, even reading can get boring. I need something to do. When that happens, I sit there until my mom comes home, or I sleep.” Henry also can’t eat or drink while he’s sick, so his parents have learned the procedure to hook up an IV to nourish him.

Henry does not know anyone else his age with pancreatitis, a fact that does not bother him. “I just think of myself as a normal kid,” he says. He knows how to weather attacks and how to take care of himself. For other children in his position, Henry advises that they pay attention to their bodies. “As soon as I feel slight pain, I tell my parents. Also, I don’t eat if I think it’s pancreatitis”. He also tries to remember to take his medication on a daily basis. When in the midst of an attack, Henry says that the most important thing is to stay occupied. He especially likes reading, and says that The Phantom Tollbooth was the last good book he read. But patience – the calmness with which Henry approaches each attack – is sometimes the only tool there is. “Be careful with the pain,” he suggests. “Find something to do – it will be over soon.”