ONE THANKSGIVING NIGHT, my son and I appeared at the doors of our local health center just as the nurse on duty was about to lock them. She saw a little 10-year-old boy with his worried mom and opened the door. My son was complaining of severe abdominal pain and I thought it might be acute appendicitis. The nurse told him he was very brave as she started an I.V. and obtained blood specimens. At the time I was a night nurse, due at work in another town by 2300.
My son's blood work results, including the white blood cell count, were normal and the healthcare provider said it was more likely he had gastritis. Drinking a soothing antacid/analgesic mixture provided relief. Grateful for their kindness and help, we left with a plan for follow-up.
Follow-up visits would continue for over a decade. My son would seem to get better, then experience incapacitating episodes of abdominal pain. Appendicitis was ruled out again and again. Bowel habits had no pattern. He kept a health journal of diet, elimination, activity, pain, and whatever seemed to relieve the pain at any given time. The nurse was right-he was brave. He missed school, ballgames, toy store visits, and friends' birthday parties. The pain attacks were erratic. He experienced nausea, vomiting, abdominal distension, early satiety, and weight loss.
A pediatric gastroenterologist determined my son had irritable bowel syndrome (IBS). The symptoms didn't quite fit, but no other diagnosis could be found.
Finding his voice
Experiencing unpredictable, horrible pain made my son feel hopeless and me feel helpless. I'm a nurse and I'm his mother: I should be able to help him. Mom could comfort him, but it took the nurse in me to teach him to advocate for himself.
He endured a year on a lactose-free diet without the reward of pain relief. He found ways to ease the pain: walks, baths, heating pads.
Now a teenager, my son helped care for my mother after she was diagnosed with gastric carcinoma. She received hospice care in her home, then ours. Her brave grandson announced at age 14 that he'd become an oncologist. He'd make an excellent one, filled with compassion and an understanding of dealing with pain.
The pain continued at college, where missing classes wasn't forgiven the way it was in high school. High school teachers and the school nurse had been advocates for this good student, but college was a new challenge. A friend often took him to the ED, where prescriptions were written for opioids that he refused to take, because "I need to function." He still had no lasting relief.
Finally, an answer
Last summer he found a gastroenterologist with an advanced practice nurse who specializes in IBS. After undergoing gastric emptying scintigraphy, we finally had an answer: The cause of the pain was gastroparesis. At last we had a sense of control, if not a cure.
Gastroparesis is delayed gastric emptying without mechanical obstruction. Signs and symptoms include nausea, vomiting, early satiety, bloating, and upper abdominal pain.1 It's frequently associated with diabetes and is more common in women, but it can also affect males without diabetes. Staying well-hydrated and eating small, frequent meals low in fat and containing only soluble fiber help. Prokinetics and antiemetics are helpful for patients who don't respond to dietary modifications, and gastric electrical stimulation may help patients who are refractory to medical therapy. Severe gastroparesis may require enteral nutrition via a jejunal feeding tube.2
My son has learned to manage his diet and knows the limits, even when a slice of pizza looks tempting. He can describe his symptoms and work with healthcare providers unfamiliar with his history. On difficult days he still looks to me for comfort, but he's learned how to help and advocate for himself-and that is a comfort to me.
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