Gregory's Hope

Gregory, Age 11

It is May 2006, and Gregory, a 5th grader, was just diagnosed this month with Crohn's disease. We realized something was wrong with him when he kept getting sick after a stomach virus the day after Christmas 2005. In the following months, every few days he would have a low-grade fever, and he began complaining of abdominal pain. He was tired all the time, and he started to lose weight. Some days, the pain had him curled up on the floor, unable to walk. Sometimes he would vomit. Sometimes he would have diarrhea, or just mushy stools. He missed eight days of school in one month, which was HUGE for a kid who has never missed more than two days in any given school year, and then it was usually because of his asthma.

P.S. Click photo to enlarge.

So his pediatrician ordered some blood work and a stool culture, but all he could tell us was that Gregory wasn't getting enough iron. So he started special vitamins. Then we check his blood again a few weeks later, and his iron levels had not changed. Something else in his blood told the doctor that he had a lot of inflammation somewhere in his body. This puzzled the doctor. And the fevers and pain continued, which worried us.

Finally, he was sent to a pediatric gastroenterologist for more tests. First, they did a CT scan, where he had to drink this really gross chalky drink. He ended up vomiting and so we had to start all over :( Then he laid on a table that slide through a giant machine that looked like a doughnut! The scan showed that he had inflammation in his intestines. The next day, his doctor used a special instrument to go down into his stomach and a little beyond for a look at what things were like. He also went up the other end to see what the large intestine looked like. The doctor found a very red and inflamed area near the end of his small intestines, and so we knew then it was Crohn's. The last test he had involved drinking barium, another really gross drink, and then having x-ray pictures taken over the course of several hours. There was a problem with the liquid moving through him fast enough. It turns out, a huge section of his bowel was really inflamed and even partially blocked, which is why things weren't moving right.

Today Gregory takes Prednisone to help reduce the inflammation, and another drug called 6MP that will eventually also help with the inflammation (it takes almost two months to start working). He also takes Prevacid, because he has inflammation in his esophagus, and he's taking Flagyl, a strong antibiotic. Because his body has been malnourished for a long time (he weighed 57 pounds just last month) he takes lots of vitamins and minerals and tries to eat lots of high-calorie, nutritious foods. Milkshakes and grilled ham and cheese sandwiches are his favorite!

Right now, he flops between being happy that he's starting to feel a little better, and frustration that he has to take so many pills every day. He also has ADHD (attention deficit disorder), and has to take medication for that as well. We're thinking about going to a compounding pharmacy to see if they can combine some of his medicines into one capsule and make his mornings and evenings a little easier.

It's all very new for him, and he still has a lot of adjustments to make in his mind about the reality of his health. We know that the prognosis is good for a full life, but right now, it's hard for him to be a "patient" patient.

Written by Gregory's mom, who loves him so very much.