Three Bizarre Things I Learned About Eating Disorders: Part 1

Thank you all for the support you’ve shown for my daughter as she recovers from an eating disorder. As we’ve struggled through her treatment, we’ve discovered how much bad information circulates through the media about this devastating condition.  I wanted to share three things that shocked us, in the hope that we can equip some of you in case you encounter eating disorders in your own family or ministry.

Part 1: Children can have eating disorders at any age, including in infancy.

 

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On the way to her second appointment with the Eating Disorder clinic, The Firecracker sat in the backseat of the car, explaining to me why she didn’t think she had an eating disorder. “Mom, I’m just picky. I’ve always been picky, and that’s okay.”

I was confused. “What about the cinnamon roll incident a few weeks ago? You said you thought you had ‘a brain disease’ that was keeping you from eating.”

“I do not!” she yelled. “I’m JUST PICKY!”

She also had refused breakfast that morning.

(It was a crazy time, trying to get all four kids out the door to four different destinations, and I’d overslept. I didn’t enforce breakfast, I’d just said, “Fine, we’ll get you something when we get there.” It was my own fault for not insisting.)

I was pretty sure she wasn’t thinking straight, and I was driving, so I tried to de-escalate. “Firecracker, I’m not arguing with you about this, but you can ask the doctor yourself when you get there. ‘Do I have an eating disorder, or am I just picky?’ Then, let me know what you think.”

After she’d had some food, I asked the therapist for her: “The Firecracker doesn’t think she actually has an eating disorder—can you explain the difference between pickiness and a real problem?”

The doctor smiled. “Firecracker, pretend that between my hands are all the different foods most people eat.” She stretched out her arms, like a kid who says, I love you THIS much!

ILoveYouThisMuch

“Pretend these are all the different varieties of foods people eat all over the world. When you have an eating disorder, it starts narrowing down.” She brought her hands a little closer together.

“Maybe you find several things you don’t like.” She brought her hands closer.

“Then you start cutting out entire food groups, like maybe sugar, or meat,” and she brought her hands closer. It was like she was shaping a funnel with her hands.

“Then you only want to eat the meat when it’s cooked a certain way, or you’ll only eat it from one restaurant.” Her hands nearly touched.

HandsCloseTogether

“Then, you get to the point where all you’ll eat is, for example, chicken nuggets and macaroni,” she stuck her two pointer fingers out, about an inch apart, “and eventually, you’ll have a crisis: something will go wrong with the chicken nuggets, and macaroni, and you won’t eat those either.” Her fingers came together.

“At that point, you’ve already been starving your body of the nutrients it needs for you to grow, but when the crisis comes, your heart and your brain are badly affected. We have four girls in the hospital right now with severe heart problems, and we don’t want you there. Firecracker, you have an eating disorder. Our goal is to get you from here,” where her two fingers touched, “To all the way out here,” and she stretched her arms out again.

At that point, The Firecracker stopped her: “Do you go back up the pyramid gradually?”

(She called it a pyramid, I thought. Nice. An inverted food pyramid that could collapse on top of her at any second.)

inverted_pyramid

“Oh no,” said the therapist. “We stretch you out very quickly. Because if we took you from here,” where her hands touched, “to here,” where they’re an inch apart, “then when you slip up, you go right back to starving again, and we can’t do that. We have to stretch you waaaaaaaaaaaaaay out here, so when you slip, you won’t hurt your body in the process.”

“Gotcha,” she said. Then she turned to me and said, “That food-crisis sounds like the fish-nugget incident.”

I felt like she’d punched me in the gut.

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The fish-nuggets. How could she remember that? How could I forget? Maybe I’d blocked it out. It hurt so badly just to re-vist that memory.

Let me explain:

The Firecracker didn’t eat the day she was born. Despite breastfeeding classes and help from the lactation consultant, she never latched on for the first 24 hours. She screamed, she thrashed, she wailed, and it was almost like she was scared of eating—but she was a newborn, for crying out loud! The next day, after an hour and a half of wrestling, with my husband holding her arms down, and the lactation consultant holding her head, she finally latched on, and ate.

It was this way for 6 weeks. I pumped, she screamed, we wrestled her arms down, and we slept in 2-hour increments. Finally, I said, “This is crazy,” and gave her formula. She threw it up. We changed the formula. She threw that up too. She fought the bottle. She even wiggled her head back and forth to keep the nipple away.

The pediatrician and the lactation consultants assured me that breastfeeding was hard, and to keep trying. They were certain that my stress was contributing the the problem. I needed to relax, they said.

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Two weeks later, someone from an online forum said, “This sounds like acid reflux disease.” This was a mom who had never seen my daughter. I took her to the pediatrician, who said, “Yeah, it sounds like it could be reflux. But let’s just keep an eye on it for a while.”

KEEP AN EYE ON IT? I demanded something for her—either Zantac or Prevacid. I’m pretty sure I yelled, but I didn’t care. We’d been “keeping an eye on it” for eight weeks now.

After her first dose of Zantac, she ate with no problems.

Months later, she refused solids, after initially liking them. She developed chronic constipation, and at age 12 months, she only weighed 13 pounds. (By contrast, my 4th daughter is 13 months and weighs 22 pounds.)

We struggled to get her to eat every day. Oatmeal had to be just the right consistency. Peanut butter was evil. Spaghetti was too messy. Tomato sauce was disgusting. Nutella was a gift from God. She would drink OJ by the gallon if we let her, and loved a special lime yogurt.

Her second pediatrician assured us that toddlers were picky—don’t force her. Just give her what she’ll eat, and she’ll grow out of it someday. Give her more fiber, and some fruit for that constipation. (I left his office mumbling, “YOU try and give her fruit, and let me know how that works out for you!”

I wished nanoprobes were available in the 21st Century….

JanewayAssimilated

Just before her second birthday, we found out she had a citrus allergy.

She loved Wendy’s chicken nuggets. We were so thankful that she would at least eat them consistently! We should have bought stock in the company. She ate them at least twice a day, every day.

However, she was strapped into her carseat on the day when it all changed. We pulled through the Wendy’s drive-through, I gave her the little nugget box, and she burst into tears. “They taste like FISH!!” she screamed. “I can’t eat them!!” She was sobbing—great heaving sobs for her little body.

She was two, and she didn’t yet weigh 20lbs. We still had her carseat rear-facing.

She didn’t eat for three frantic, fearful days.

I searched online for any answers, and discovered that infant anorexia did exist—could that explain why she wasn’t eating? Her pediatrician rolled his eyes a mile wide, and said that it was an extremely rare condition, and I was overreacting. He assured me that some toddlers refuse to eat for days—because they build up plenty of calories on other days. He joked about toddlers being like camels. I tried to tell him this wasn’t like that, but said that I was panicking, and needed to calm down. “Stress affects the whole family, and probably makes her want to eat less,” he said.

On the third day of no-eating, I realized, “Either I’m going to kill this child, by not being able to feed her, or she’s going to kill me from worrying about her. I have to do something. And no one is going to help me, because no one believes me.”

I did the only thing I knew to do: I sat her 24-month-old butt in a high chair, and refused to let her up until she ate. She screamed, she thrashed, she threw the food on the floor or at me, she hit me—I didn’t care.

I did whatever I could to get her to eat. I admit, I spanked her for not eating. Knowing what I know now, I’m ashamed of that, but I don’t want to deny it or cover it up. I didn’t care–I was terrified for her life. At the time I thought, “If CPS comes knocking on my door, I’ll invite them in and beg them on my knees to help me feed her.”

Eventually she ate. She fell asleep in the high chair.

We repeated the scenario at the next meal.

And the next meal.

And the meal after that.

I twisted myself into a pretzel, trying to figure out what she would eat without such devastating conflict. Pizza—but no sauce. Eggs—but scrambled to a certain consistency and cooked to a certain dryness, with no salt. Cottage cheese—but only with just the right amount of liquid in it. Oatmeal—at a certain temperature with just the right amount of liquid in it.

She was two.

The worst part is that she still remembers this. Now we know that “The Fish-nugget Incident” was likely the first episode of “acute food refusal.” Also known as an eating disorder.

She knows that now too. She’s able to say, “I have an eating disorder” to several trusted friends, and to the people at school who monitor her eating habits. Yesterday, she told the therapist that she’s enjoying recess for the first time ever, now that she’s eating a 1000-calorie lunch beforehand.

She hugged me this morning as I packed her lunch, and said, “I love this treatment, mom.” She didn’t say that at breakfast as I was making her eat a cup of fruit and 12 oz of dairy and 25 grams of grain and 5 tablespoons of dietary fats, but she did say it.

I’ll take it. <3

One thought on “Three Bizarre Things I Learned About Eating Disorders: Part 1

  1. I had no clue this disorder was even a thing. Thanks for sharing your experience; you will doubtless be a help to other moms facing the same thing. Praying for you and your beautiful family.

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