Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE, who serves on APFED’s Health Sciences Advisory Council, talk with Declan, a teenager living with eosinophilic esophagitis. In this episode, Ryan and Holly interview Declan about his EoE diagnosis, his dietary restrictions, how he receives support from his parents and friends, and upcoming milestones such as transitioning clinical care to an adult provider and attending college. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces the guest, Declan, a teenager living with eosinophilic esophagitis (EoE). Declan is 16 years old and has been living with EoE since 2019. [1:38] Declan likes to hang out with friends, play video games, and play the cello. Declan has been living with EoE for about four years. In the beginning, his EoE was hard to handle, in part because it was new to him. [2:03] Eliminating milk because of his EoE was hard for Declan. Once he started the milk-free diet, he got his eosinophils to zero in his second endoscopy. [2:24] Before Declan was diagnosed, his weight was low, he was having trouble swallowing, both of which are signs of EoE. He was at risk of having a feeding tube when he was diagnosed, but is now able to manage his EoE with diet therapy. He feels much better now. His mom helped him find substitutes for things that he can’t eat. He enjoys the substitutes. [3:03] In 2018, Declan lost a lot of weight, had trouble swallowing, and felt like food was stuck in his throat. Losing weight didn’t worry him at first. When he started getting the feeling of food getting stuck in his throat, he became concerned and sought help. [3:39] Ryan was diagnosed when he was two, so he doesn’t remember much of it but his parents told him about it later. [4:10] Holly had symptoms her whole life but they were not recognized as EoE for many years. She put ketchup on all her food and drank a lot of milk to be able to swallow. Holly was diagnosed in her 20s at which point she needed an esophageal dilation. [4:49] Declan was about 12 when he was diagnosed after a period of weight loss and then swallowing issues. [5:12] Declan can’t have milk so his friends thought he was lactose-intolerant. He had to explain EoE to them. They eventually understood. [5:58] Declan has to read labels for the ingredients. If something has casein or whey, he cannot eat it. Eating at restaurants is challenging if they don’t have an allergen menu. He often researches foods online. Declan’s Mom helps him a lot through this journey. [7:20] Declan’s last bad reaction happened shortly after he was diagnosed. He was on a cruise ship with his family. There was so much food with milk on the ship and he decided to have some. After the cruise, he felt terrible, had difficulty swallowing, and food once again got stuck in his throat. Ever since then, he has remained milk free, except if he consumes it by accident. [8:08] If Declan accidentally has milk, he takes a steroid that opens his esophagus a little more and takes away the temporary inflammation. [8:33] Even as an adult, it is still hard for Holly to resist the cheesecake or the pizza with real cheese. She also can’t have milk due to her EoE. [9:15] Declan and his mom recently baked milk free chocolate cookies using vegan butter and almond milk. Declan’s mom has substitutes that she uses in all recipes. One of Declan’s favorites is a homemade dairy-free pizza. [9:52] Since Holly was diagnosed, many new dairy alternatives and substitutes have come onto the market. There are many brands of cheese and milk alternatives. [11:16] Declan takes a pill every night that helps with his acid reflux. [11:42] Ryan describes his journey in the transition of care process from pediatric patient to adult patient. He started by learning the medicines and dosages he was on and having a say in what foods he was eating and what foods he was avoiding. [12:15] At the beginning of Declan’s care, his mom did everything. She made the appointments and spoke to the doctor for Declan. Now Declan is preparing for his transition of care. He is more aware of what he can and can’t eat. He speaks for himself, describing his symptoms and what’s going on. [13:18] School lunches can be difficult for Declan. His mother researched the ingredients of all the ...
