The Rough Road to Diagnosis: From a Parent of a Child With Crohn’s
Last updated: April 2022
In 2014, when my son was 12 years old, I began to worry that his growth was slowing, as he didn’t seem to be moving past the 5th percentile in height. I spoke to his pediatrician about my concerns and while he was somewhat dismissive at first — my son was young and healthy, he said, and our entire family on the short side — he eventually agreed to refer us to an endocrinologist.
The doctor was a soft-spoken young woman who offered a running narration of what she was doing during the exam, so my son, who has high-functioning autism, would not feel anxious. I’ve found that female doctors are more patient than male doctors overall, more willing to listen and less likely to judge. I’ve been a single mom for the whole of my son’s life and have had to endure a not-insignificant amount of eye-rolling, either subtle or not so subtle, from male doctors treating my son.
The lab work showed that my son's hemoglobin levels were slightly high, but every other test was normal, so the doctor wasn’t overly concerned. He was also in too high a height percentile to qualify for growth hormone, which I was ambivalent about having him do, anyway. We made a follow-up for 3 months down the road to reassess.
My son's first signs of pediatric Crohn's symptoms
But then my son's symptoms began. He started losing weight: 5 pounds, 10 pounds, 15, 20, all in the span of a month. His complexion, always fair, took on the color of Elmer's glue. His stomach hurt. At first, he’d occasionally say, "My stomach feels weird," or "I’m gassy." But by the end of the month, he was screaming, "Mommy, please help me! I’m hurting!"
Desperate to relieve his pain, I made an appointment with the first gastroenterologist who had an opening. This doctor spent the first 20 minutes interrogating me about what my son ate and implying that his weight loss had to do with my not feeding him enough. The doctor sent us away with a few samples of PediaSure and the order to come back in a couple of weeks.
I was shocked and angry. As soon as we got home, I called an integrative doctor we had been working with since my son was 3 to beg her to call the gastroenterologist on my son's behalf. Please tell him I know how to care for my son. Please tell him my son has never lost weight like this before. Please tell him to do his job.
Judgement and blame from doctors
Her call worked... partly. The gastroenterologist agreed to do some testing, but he wanted to do a magnetic resonance enterography (MRE) of my son's abdomen, which he would never tolerate. My son is afraid of tight spaces and loud noises and that pretty much sums up the experience of getting an MRE. The gastroenterologist didn’t want to hear this. An MRE is the gold standard, he said. When I said that my son had autism, the doctor sighed loudly, as if my son’s disability was an annoyance. I asked if my son could have IV sedation because Ativan would not be enough to calm him. No, the doctor said, he would worry about aspiration after having my son drink the contrast — although I have since heard several times of this being done.
I insisted that the doctor do a colonoscopy. I knew the prep would be difficult for my son, but I also knew that if I was with him, he would get through it. I wasn’t about to have him drink a bucket of contrast glop and then freak out so much he wouldn’t even go into the MRE machine. The doctor finally agreed, but it seemed clear that he viewed me as a problem parent. As I have had to do many times throughout my son’s life, I swallowed my pride and thanked the doctor for his help.
How do you diagnose Crohn's in a child?
Getting my son through the colonoscopy prep was exhausting. He is a bright boy, but trying to connect the pain in his stomach to the need to take laxatives, drink bottles of magnesium citrate, and empty out his stomach proved challenging. He drank the prep too fast at first and threw up. I called the doctor's office and they said to start over and so we did, more slowly this time. We lay on my bed and held hands as we talked about all the restaurants we would go to once he felt better. My son is a diehard foodie, which made his stomach pain, and subsequent loss of appetite, even more heartbreaking.
My mother and my son are extremely close, so I asked her to go with us to the nearby children’s hospital on the day of the colonoscopy. My son was weak from the prep and his weight loss and held tight to both our hands as we walked in. He was anxious, but trusted me when I said the test would help us "get to the bottom of things," a phrase I’d used multiple times in the past few weeks.
I had walked my son through the outlines of the procedure. He would put on a gown like he’d worn at the doctor and the nurse would give him a drink that would make him sleepy. Then he’d be wheeled down to the room where they would do the colonoscopy and they'd put a mask on him, and he’d be asleep for the whole thing. The nurses let me stay in the procedure room with him until the doctor came in. I kissed my son’s forehead and left, so nervous I could feel my heartbeat throbbing in my ears.
Receiving my son's Crohn's disease diagnosis
My mom and I tried to make small talk in the waiting room, but we were both too distracted to do anything but stare at the wall clock above the TV. After about 40 minutes, the doctor came out and called me into a separate drab-looking alcove. "Well, we found what we were looking for," he said. "Your son has Crohn’s disease. It’s in the small bowel and the colon."
I wanted to remind the doctor that what he was initially looking for was a way to blame me for my son's weight loss. But again, I said nothing, because I was indeed grateful that we had determined a reason for my son's symptoms. As the doctor started to discuss next steps, I knew 2 things. We had a long road ahead. And I needed to find another doctor ASAP.
Does living with IBD impact you financially?