This is part eight of Autumn’s story. The rest of her story can be found here:
Part one, part two, part three, part four, part five, part six, part seven
Autumn was relieved the GI doctor listened and addressed her concerns. He had already confirmed, by observation alone, there was an issue, but now they had definitive proof. Testing showed Autumn’s son had a disease called eosinophilic esophagitis (EoE).
Facts about EoE
EoE is an autoimmune disease where a type of white blood cell known as eosinophil, builds up in the esophagus. Autumn refers to eosinophils as “suicide bombers.” She says when an allergen enters the body, it reacts by sending eosinophils to the site it was first detected. In this case, the esophagus. However, by the time they get to the site, the allergen has already left and the threat no longer exists. But eosinophils are programmed to attack and so they detonate. Hurting perfectly healthy esophageal tissue in the process and making swallowing food very difficult.
What makes EoE different from typical IGE-mediated allergies is that symptoms appear hours AFTER ingestion. This makes it hard to diagnose. And it also makes it difficult to determine the food that triggered the reaction.
A diagnosis that made sense
This explained why Autumn’s son cried so much at night time. It takes 12 to 72 hours after ingestion before the first symptom appears, which usually coincided with bedtime. He was crying because he was in pain! It wasn’t teething. It wasn’t gas. It wasn’t night terrors. He was expressing his hurt in the only way a baby knows how, by crying.
Autumn now had a diagnosis that made sense! It explained ALL the symptoms. In addition, she finally understood why her son wasn’t interested in eating solid foods: It hurt him to swallow!
Treating the damage
The next step in the process would be to find the food causing the reaction. Unfortunately, Autumn’s son’s esophagus was very severely damaged and she had to wait until it was healed before she could look into that.
To fully understand the scope of the damage, to be considered active disease the biopsy should contain 15 eosinophils per high-powered field (according to the National Library of Medicine.) In Autumn’s son’s case, they stopped counting at 150: That’s how bad it was.
It would take six months of a high-dose steroid treatment to get his esophagus healthy before they could even begin to see what food was the culprit. Although in 74% of EoE cases, it’s milk (Krager.com.)
Emotional ramifications of the diagnosis
It was after getting the diagnosis, the GI doctor told Autumn how lucky she was her son was diagnosed at such a young age. But Autumn wasn’t feeling lucky, all she could see were her futile attempts to get her doctors to listen to her. All she could hear were the cries of her baby. Who, she now knows, was crying in pain. No, she wasn’t feeling lucky, far from it: She was angry.
Angry at the doctors for not listening. Angry at herself for not making them listen. It was hard to deal with the emotional ramifications of the diagnosis and knowing she was right didn’t ease her pain. Instead, she found herself by her son’s crib sobbing her eyes out because she failed him.
In the final post, Autumn will share how she dealt with the guilt and the lessons she’s learned, and the advice she’d give to others in this situation.