Wondering if it’s just our daughter being a 4-year-old or hyperphagia
Given Emerson's age, we're living in a gray area of guessing
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Nearly four years ago, my husband, Jamie, and I were introduced to Prader-Willi syndrome (PWS). It was a Monday evening in late September when we received an urgent email about a potential match through adoption, a 5-week-old baby girl with a PWS diagnosis. We were advised to look into the condition but not over-educate ourselves.
Hyperphagia was the most prominent thread across everything we read.
We learned that food security was essential, and that we would need to implement strict environmental controls and predictable routines to help manage behavior and reduce anxiety. We also learned that hyperphagia in PWS typically manifests between the ages of 3 and 8, but that early intervention was paramount to address developmental challenges.
We joke that our initial thought was, “Looks like we’ll have more incentive to keep a healthy diet.”
Striking a balance
We were on a flight to our baby girl within three days of receiving that email. There was talk of a gastrostomy tube due to slow feeding, but the doctors decided to wait until we arrived before making a decision. Upon arrival, we immediately learned how to feed her; holding a finger under her chin to facilitate the sucking if she’d lose steam, or to remind her to keep going if she started getting tired. A feed lasted roughly 45 minutes. She showed steady improvement, which meant we were able to continue feeding her orally.
She started transitional foods when she began securely sitting up around age 1. We’ve always been very intentional about her diet, prioritizing proteins and vegetables. However, there was a balance to strike. She was still pretty small, so we had to make sure to offer carbs and natural sugar in moderation. In an effort to mitigate cravings for sweets, her diet has been predominantly savory.
Emerson crawled for a short time and began walking at around 18 months. Since then, she’s constantly been on the go. She loves taking walks, running around, and playing active games like “Ring Around the Rosie.” She’s also a dancing queen, constantly busting a move.
The pendulum
Last month, we celebrated our kiddos’ birthdays. Our daughter, Emerson, turned 4, and our son, Ellis, turned 1. I’m struggling to grasp where the time has gone.
Monitoring Emerson’s eating habits in these first few years has been a pendulum. First, it was ensuring she was getting adequate caloric intake. Then, monitoring her intake to mitigate the development of cravings for sweets. Now, four years in, the watching hasn’t stopped. We’ve just pivoted, because she’s squarely in the age range that hyperphagia could manifest.
Given her age, we’re living in a gray area of guessing. A few weeks ago, Emerson grabbed our hands and pulled us toward the pantry around mealtime. Plenty of 4-year-olds do that. More recently, we caught her staring at our plates after she’d already finished hers. Plenty of 4-year-olds do that, too. We don’t know if either of those moments meant something, or if she’s just being 4.
Every meal has a little bit of math attached to it. Some of that math is planning. We balance higher-carb days with days that lean more toward protein and veggies, and we keep an eye on how active she’s been alongside what she’s eaten.
As caregivers, we know we need to stay on top of it. As her parents, we’re doing our best not to turn every snack request into evidence. We’re still figuring out that balance because hyperphagia is always in the back of our minds.
While we’re mindfully walking this line, Emerson is busy being a 4-year-old. She’s dancing through the kitchen, acting out scenes from “Bluey,” or making her rounds with her favorites, a small collection of toys that make no sense together but that she consistently seeks out and carries with her wherever we go. Currently, this collection consists of three particular Fisher-Price Little People (Belle from “Beauty and the Beast,” Wormtail from “Harry Potter,” and Woody from “Toy Story”), a blue rubber ducky, a pink and light blue plastic cupcake from a play kitchen set, and a green rubber frog. I have no explanation for why these are the favorites. To Emerson, they just make sense together.
We’ll take mental note of the snack requests that seem more persistent than usual, or a second helping requested before she’s finished her first. Most of the time, it’s nothing. We log it anyway, quietly, and keep moving.
Just enough attention to catch what matters, and enough restraint to let her just be a kid at the table.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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