I’m really struggling right now, feeling like I should have done more for my son. He’s been suffering from gastrointestinal symptoms for the last six months, and yesterday the gastroenterologist diagnosed him with delayed gastric emptying, otherwise known as gastroparesis. He has a mild form of it but looking back I feel like I should have seen the signs and tried to do something sooner for him.
When his first symptom appeared, vomiting, I was on high alert looking for clues as to what was going on with him. He wasn’t sick and although he has many food allergies, he didn’t eat anything that wasn’t safe for him. Then he started waking up in the middle of the night with stomachaches and complaining that food was coming up from his stomach. At this point, I emailed the doctor and told her something wasn’t right and she asked me to bring him in. Based on his symptoms and his medical history of allergies and asthma, she felt like what he was experiencing could be eosinophilic esophagitis (EoE). She put him on Omeprazole, to decrease the amount of acid in his stomach, and scheduled him for an endoscopy to confirm. The endoscopy kept getting pushed back because the coronavirus was running rampant and no elective procedures could be done.
During this wait, John’s symptoms were increasing. He felt like food was stuck in his chest, he was constantly coughing while eating, and he had more frequent stomachaches. I continued to communicate with the doctor and the first day she was allowed to schedule an endoscopy, she brought John in. When the results came back that John didn’t have EoE, I think we were all shocked. They did find something in the biopsy of his small intestine, but it’s not specific to any one diagnosis, although most frequently seen with Celiac disease. She scheduled him for the barium swallow test and blood work to check for Celiac, among other things. While waiting for these tests to be completed, I started doing my own research. I wanted so badly to find an answer and this was all I could do as I waited.
Thankfully, the barium swallow test was negative, but it helped illuminate a really important symptom. The technologist doing the test told my husband that he would probably have pale stool from the barium, and it was nothing to worry about. Well, he did have pale stool, but it took nearly four days for us to see the barium pass in John’s stool. Immediately, my mind was off and running. Was this the normal timeframe? Could this mean something? Then there was another odd occurrence. John vomited undigested raspberries that he had eaten in the morning, 8 hours earlier. When I received the call from the gastroenterologist to discuss his blood work results that were normal, I talked to her about the two new things that occurred. She then diagnosed him with delayed gastric emptying. She said it explains all of his symptoms, but was not in her initial thoughts because of his age. She’s starting him on antibiotics to jumpstart his stomach and hopefully, we will see results in 10 days.
The reason I’m beating myself up over this is that there were other signs that I missed. John gets an extremely distended stomach by the end of the day. My husband and I would joke about his “Buddha belly”. He also has times when he gets these really dark circles under his eyes as if they’re bruised. While I’m not sure there’s scientific literature supporting this, many mothers say that this is their tell for when their child is having a flare-up. I always suspected that John would sometimes eat because he was confusing hunger with the nausea he was feeling, but there was no way for me to actually know, it was just a gut feeling. I know hindsight is 20/20, but I feel like I let him down, and let him suffer for longer than necessary. My husband tells me I’ve done everything I can for him and helped to figure out what was wrong, but it doesn’t feel that way right now.