The Hunger Games

Childhood insatiable hunger is a common symptom of Microdeletion 16p11.2. In our house, it is one of the most difficult to deal with. Before Olin was diagnosed with ADHD and started taking medication for it, he was hungry all the time. He would steal food, hide, and eat until he was so full that he vomited… And then he would continue to eat. He has a particular affinity for anything sweet, including plain old sugar.

The unique sensory reception that comes with autism causes him to want to ‘experience’ his food in ways that the normal person wouldn’t. (A few years ago, I caught him in his room with a bag of sugar. He didn’t just eat it, he was rubbing it on his arms, then licking it off. What a mess.) He prefers to eat with his hands, and will chew his food, then open his mouth and feel what he has chewed up. He eats very quickly, and in huge bites that he can hardly chew.

Olin will often wake up early in the morning, and sneak down to the kitchen to steal food. He will eat half a box of cereal or an entire bunch of bananas, if he can get them. He prefers sugary things, though – especially jelly. Because of this, we keep most of the food locked up overnight. The freezer, refrigerator and pantry all have locks. The crackers, bread, baking supplies (except the sugar) and noodles, he doesn’t get in to, so those can stay in the regular cupboards.

Appetite suppression is one of the main side effects of Methylphenidate, the medication he takes for his ADHD. In Olin’s situation, it is very effective in controlling his appetite. He takes it very shortly after he gets up in the morning. We can tell when it starts to take effect, because his appetite will abruptly disappear – sometimes in the middle of a bowl of cereal.

While the medication is active, he has no interest in food. He picks at his lunch or doesn’t eat at all, and will turn down even ice cream or candy, sighing, “I’ll save it for later.” We can judge when his meds are starting to wear off for the day, because he will suddenly announce, “I’m hungry.”

As the evening wears on, his whining, “I’m hungry!” will escalate, regardless of what and how much we actually feed him. It turns into a major whining/crying/temper-tantrum-throwing debacle on an almost nightly basis… Mostly because we have to tell him “No,” repeatedly.

If you’d like to feel like a horrible parent, look at your child, genuine tears pouring down his face, wailing, “I’m hungry!” with absolute sincerity. Then, tell him “No.” Not once… Fifty times. In an hour.

Don’t assume we don’t feed him. He eats a generous supper, and we usually allow him a larger portion and/or seconds to make up for the meal he missed. However, he continues to bolt his food in huge bites, as quickly as possible, and will try to eat far beyond his stomach’s actual capacity if allowed. He will still vomit if he eats too much, too fast. More importantly, if he overeats and then goes to bed immediately afterwards, he can vomit in his sleep. He sleeps very soundly, and the combination could easily lead to aspiration pneumonia or asphyxiation.

Crossing the gap between the total disinterest in food during the day and the voracious bellyaching in the evening is a tightrope walk that we take every night. To try to combat this issue, we have come up with a few suppertime strategies:

Small Dishes: These are the same strategies they suggest for adults to facilitate weight loss. With little kids in the house, we have kid-sized dishes. Giving him a small plate keeps us from overfilling it, and makes him feel like there is more food on the plate. Additionally, we give him a small fork to encourage smaller bites and slow down the eating process. This doesn’t work particularly well, because he prefers to use his hands to scoop up as much as possible and stuff it in his mouth.

Slow Down: “Slow down, Olin!” is probably one of the most common phrases uttered at our dinner table. Reminding him to use his fork helps force him to slow his eating, but it is frustrating for him and has limited success. If he refuses to use his silverware, we make him wait a few seconds between mouthfuls. If we didn’t strongly regulate it, he would absolutely bolt his food, get some more, and just keep eating.

Wait 5 Minutes: We understand that he is hungry physiologically, because he usually skipped lunch, so we generally allow a second helping. Instead of giving it to him right away, though, we have him wait 5 minutes before he starts the stuffing process again. He whines and complains for the entire 5 minutes, but it does have the upside of teaching him to read a face clock, so he know when five minutes is up.

Communication: Tim and I both work, and we have several babysitters and respite care providers who are in and out of the house. Dinnertime is often a sort of ‘changing of the guard’, and the incoming person doesn’t always know how much Olin has had to eat, or anything else about the afternoon’s activities. Giving and receiving a sort of shift report is an important part of keeping care for Olin and the other kids as consistent as possible. In truth, good communication among parental figures is self-defense, even without Olin’s unique requirements. Every single kid will lie through their teeth to get what they want out of an unsuspecting adult.

Taking Inventory: When he has reached the threshold that we’re concerned he’s had too much, and we’ve exhausted our resources for distracting him and slowing him down, we try to take inventory. We either list what he just ate, or have him try to remember. We can go down the long list of snacks and supper, and he will agree with each line item…. At the end, though, he always wails, “But, I’m still hungry!” It doesn’t work. We keep trying, in case eventually his logic overcomes his stomach.

The geneticist suggested that we train Olin to ask an adult before he eats anything, regardless of when or how much, so that he gets accustomed to his intake being controlled. We have had no success at all with this particular suggestion, as there seems to be no reward in it unless we can tell him, “Yes.”

I don’t know what we’re going to do about the situation going forward. For now, I’m just grateful that his medication is working to reduce this problem during the daytime. A few hours of the hunger game in the evening is stressful enough – all day was too much.

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