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Conversations with Autumn: The Road to a Diagnosis

This is part seven 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

 

Getting back from the allergist with the prognosis of ‘no allergies’ was like starting all over again. The biggest heartbreak for Autumn is knowing everything she went through AFTER the allergist appointment could’ve been avoided had she gone ahead and seen the GI- against the advice of the allergist. Instead, Autumn and her family had to go through another year of uncertainty and frustration.

 

Refusing to eat solid foods

Autumn’s son was one now and still hadn’t transitioned from the bottle to solid foods. And it wasn’t because he preferred the bottle, he just wasn’t interested in eating. 

 

The only types of foods Autumn found any success with were crackers, cheerios, freeze-dried fruit, or anything that was easily dissolvable in his mouth. This was not sustainable or healthy and Autumn knew they needed to find answers. 

 

The pediatrician thought it might be an oral issue and recommended speech therapy. But after a month of therapy, the speech therapist could find nothing wrong and saw no progress. Autumn’s son remained uninterested in eating solid foods.  

 

Next was occupation therapy (OT), the thinking being that perhaps teaching him how to eat would encourage him to do so. Autumn faithfully took her son to OT for a whole year and saw absolutely no improvement. He still refused to eat anything that wasn’t the consistency of a cracker and easily dissolved in his mouth. 

 

At this point, the pediatrician felt it might not be a feeding problem, since speech and OT didn’t help. Instead, she thought it may be a mental issue and a texture problem since he only preferred certain types of foods.

 

Taking drastic measures

Seeing as nothing was working, Autumn began to take drastic measures to get her son the help he needed. She decided to enroll him in The Feeding Clinic at Star Institute in Colorado. It’s an intense program designed to help kids with feeding issues. To participate in the program, Autumn and her son would have to live in Colorado while he underwent therapy at the institute. 

 

She decided to enroll her son during the summer when school was out. So her husband wouldn’t have to juggle both work and taking their older son to school. She also arranged for her mother to come and help her husband while Autumn found accommodations to temporarily house her younger son and her in Colorado. 

 

The Star Institute

The Star Institute uses a whole-body approach, not limiting feeding issues to just a behavioral or gut problem. Instead, they use a multi-disciplinary approach to solving feeding issues. It starts with a rigorous intake process and evaluations done by speech and occupational therapists, psychologists, pediatricians, and dietitians. 

 

As part of the intake, the Star Institute asked Autumn if her son had been seen by a GI. If he hadn’t, they would need to schedule a GI visit when they came to Colorado. But Autumn didn’t want any delays. She wanted to make sure her son was enrolled and ready to start in June. As a result, she decided to go ahead and schedule an appointment to see a GI doctor in Oklahoma, rather than wait until they got to Colorado.

 

The GI appointment

As soon as Autumn started listing off her son’s symptoms to the GI, he stopped her. At this point, she had grown accustomed to doctors stopping her and brushing aside her concerns, so she braced for an argument. 

 

However, the GI doctor surprised her by addressing her issues instead of debating them. He immediately began rattling off all the testing they needed to do.

 

Two probabilities

Although, he knew something was wrong just by doing the biopsy. The GI told Autumn based on his observations, it could be one of two conditions.

 

First, it could be a case of severe thrush because the entire esophagus was covered in a white exudation. 

 

But thrush isn’t the only culprit. Another reason the esophagus could be covered in a white secretion is as a way of protection, a condition called eosinophilic esophagitis (EoE). 

 

The GI strongly believed it was one of these two causes but only testing would reveal which one. 

 

For Autumn, it was a huge relief and she was so thankful someone was actually looking into her concerns. She wasn’t even sure what testing would reveal if anything. She was just grateful to be heard.

 

To be continued…

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