Navigating my son’s constantly changing eating habits can be tricky
My roles include parent, caregiver, bodyguard, and personal chef
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Although my 11-year-old son, little Brian, has Lennox-Gastaut syndrome and is nonverbal, he lives and behaves like a royal prince. His home is his kingdom, and with me as his personal bodyguard, we march around the premises all day.
After much meandering, I can tell when hunger sets in for Brian. As we march by the kitchen counter, he reaches for anything he can grab, like a cobra striking out at the speed of light. What can I serve up for him? I quickly pivot from personal bodyguard to personal chef.
Currently, Brian will only accept food fed by a spoon. This phase began at almost the same time his seizures stopped in December. Prior to that, Brian was the king of fish sticks and chicken nuggets. I used our air fryer several times a day to prepare his favorite breaded proteins with a healthy portion of tater tots. Lounging in his favorite recliner, he often ate more in a single meal than I would in a whole day, with mealtime lasting almost an hour. He fed himself by hand, which was very convenient.
Growing up, Brian didn’t have many issues eating. The variety of what he would eat shrank as the years went on, but his intake remained steady. However, when his seizures peaked when he was around 5 or 6, there was a six-month span of pure misery. During that time, Brian was lethargic and tired. His energy was way down, as was his willingness to eat. It took two, sometimes three people to position him, hold his arms down, and shovel whatever we could into his mouth.
We had to get creative, finding the right combination of food to sustain him during the brief feeding windows he allowed. We found the most success with macaroni and cheese mixed with scrambled egg. At one point, we had an appointment scheduled with a gastroenterologist to discuss feeding tube options. Thankfully, a switch in medications eased the constant epileptic fog Brian was experiencing, and he quickly reverted to his usual eating habits.
Being adaptable and creative is key
After the seizures went quiet in December, Brian decided he wanted nothing more to do with chicken nuggets or tater tots. We offered various other finger foods, such as cheese cubes, potato chips, Cheez-Its, and Goldfish crackers — all of which he’s been receptive to in the past. But he would either shove the plate away or drop the food on the floor or in between the recliner cushions. I finally had luck with apple slices dipped in peanut butter, but I had to place the apple slices in his mouth, as he refused to feed himself.
Still, I wanted him to eat more substantial foods. His teachers told me he’s happy eating sandwiches at school, but I’ve had zero luck with that at home. Maybe he adjusts his eating habits when different people are around?
Macaroni and cheese has historically been a winning dish for Brian. Around the time he started rejecting that, I noticed he took a liking to drinking milk. On a whim, I poured some milk into the bowl with the macaroni and made a custom Brian cereal. It was a hit! The next time, I chopped up some sausage and pancake, added milk, and drizzled on some honey. Success! Sometimes I wonder if anyone in the history of the world, anywhere, has ever happily enjoyed a bowl of pancake and sausage cereal.
Brian’s funky cereal phase lasted a few weeks, and now we’re back to regular mac and cheese. Sometimes I mix in sour cream to add more calories. He has been receptive to cheesy scrambled eggs, more so if I mix some syrup into the bowl. Occasionally, I still need help holding his arms down for feeding, but it’s not as unmanageable as it’s been in the past. We’ve been able to incorporate Greek yogurt, and he still enjoys the occasional apple or banana. I was surprised by how receptive Brian was to some chicken and rice a few weeks ago. I mixed in some yum yum sauce, barbecue sauce, and mayonnaise to moisten it up, and Brian loved it. It’s become a go-to dish.
Lennox-Gastaut syndrome is unpredictable and unique to each family living with it. For us, it is difficult to maintain consistent daily routines across all aspects of day-to-day life. Being adaptable and creative is key; no idea is too wacky if it achieves results.
Note: Lennox-Gastaut 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 Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
