Eliza’s Ailing Appetite and Her Precious, Mercurial Mind

The key point I need to make clear to a patient’s family is that when you’re dealing with anorexia, it’s not that the patient won’t eat - rather, the patient actually CAN’T eat.
—Paraphrased; a doctor who treats children and adults with eating disorders

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“How full my brain is of ideas, and my hair, is: A LOT!”
—Eliza

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More people die from anorexia than any other psychiatric disorder. Of the sufferers who don’t die, many remain abysmally sick for years - sometimes decades. When patients have strong family supports to help them when they are stuck (to eat and make healthy choices), they are less likely to die, and more likely to recover.

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Ben suffered from severely disordered eating for eight years, and has come through healthy and strong despite incredible odds that he wouldn’t. Eliza was born after Ben recovered, and yet for most of her five years she has gone in and out of moderate to severely anorexic eating.

What follows is a summary of my ongoing quest to understand the sickness of my children, even though the act of investigating sometimes makes me sad and destabilized. These emotions are better than allowing frustration and rage to explode toward my child, which is what happens if I just go with primal urges while forgoing my intellect.

It is better to identify and blame the illness/symptoms than to blame the sufferer(s).

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As you may recall, Eliza had an extremely difficult time with feeding from the day she was born. She never learned to effectively breastfeed despite months spent with lactation consultants, exercises, two tongue- and lip-tie revisions, donated breastmilk, pumped breastmilk, homemade formula, various therapies, bottles and bottle-nipples of every shape and description, and more pain, sorrow, mother-sobbing, infant-screaming, and horrendously wakeful nights than should ever be a part of ANYONE’S first period of time on this earth.

Luckily, she has no (conscious) memories of this time. And for about three months, after the inability-to-suck-milk-from-even-a-bottle awful-ness ended, and before the Next Stage of Feeding Challenges began, Eliza ate very well. In fact, she ate the way a normal young toddler should eat: voraciously, cheerfully, albeit sporadically as per a toddler’s wont, choosing a large variety of meats, vegetables, fruits, etc.

However, when she was about nineteen months old, her appetite began to decline sharply. She got very picky, and wanted only sweet/starchy/crunchy foods, and she also significantly limited her caloric intake overall (eating less even of those foods she liked most). In addition, her behavior began to deteriorate, well beyond “normal” toddler tantrumming. She stopped being cheerful during mealtimes.

For as long as I’ve been hanging out with children, people have been telling me, knowledgeably, all about their theories concerning Children and Picky Eating and how Hungry Children Eat and how “normal” it all is, and how, in every case, “it’s just a stage, and s/he’ll be done with it in a couple of months!” “Just be consistent,” is the pearl very often dispensed. And great god almighty, Jeff and I have practiced enough patience and consistency to last several hundred toddler lifetimes, but we have now had two children with very significant feeding challenges that did NOT respond to any of the normal advice - and if these eating disorders are or have been temporary it’s only by dint of insane parental exertion.

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Eliza’s eating kind of fluctuated after the age of nineteen months until she was about three years old. She wasn’t Quite as picky as her brother had been, I didn’t want to make mountains out of molehills, and her tantrums were Different than her brother’s. She definitely wasn’t autistic, so we kept offering her lots of different meals and I tried not to cater to her every whim, while attempting Positive Psychology and Trust that she would eventually consume a greater variety and quantity of food. There was a lot of screaming in general, but the social worker and therapists said that toddlers who’d had feeding challenges as infants tended to be more “volatile” than other kids. To be honest, her picky eating was just one more pain in the butt. But what kind of pathology is that?? We tried to be patient. We staggered onward.

Right about when she was three and a quarter, her tantrums got incredibly much worse (along with the other symptoms), and they were nearly all triggered by the availability of food.

That autumn and winter were awful. I documented the small horror of it here: http://www.lifeisapalindrome.com/updates/eliza-details

The quick version is that she started falling apart at many mealtimes (later, at every mealtime). “I hate eating.” “I don’t even want to see what we’re eating.” “I WON’T eat!” “If you feed me I’ll scream!” “I hate that food.” “I hate this food.” “I hate eating, I won’t eat, you can’t make me…” Her tantrums got physical, and she would smash her body into the floor, the walls, the furniture. And then it was like she was delirious - she wouldn’t remember her biting and kicking and screaming episodes afterward, but they would happen again, as soon as she got hungry and and we offered her some food.

I knew she wasn’t feeling well. And I knew that she wasn’t trying to drive us insane, or starve herself to death…but if left unchecked, her behaviors were doing both. It really REALLY sucked to imagine what Child Protective Services would think if they happened to hear our child (and at that point I thought they might be able to hear in Rhode Island) screaming, "Owie! Ow Owie OOOOOOOWWWWWWWWWW!!!!!! [this due to her smashing her own foot repeatedly into the doorframe or the floor.] MAMA!!!!!! I'm HUNGRY!!! I'm HUNGRY!!!! I WON'T EAT! I'm HUNGRY!!! OW OW OW!!!!! Mama! I want Papa!!!! I WON'T EAT!! I'm HUNGRY!!!!! AAAAAIIIIIIEIEEIEIIIEEEE!"

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That September when Eliza was three, her intensifying behavioral symptoms and “lack of appetite” were accompanied by the Lip Rash From Hell, which started out red and painful. By November it extended up to her nose and down to her chin. Additional symptoms included:

-- knee pains
-- eye pain
-- feeling tired at all hours of morning/noon/evening
-- headaches
-- nearly constant anxieties and fears
-- blood sugar issues (behavior much worse when hungry)
-- Intermittent/occasional nausea/vomiting with no known contagious or other cause
-- Stomach pains
-- Not gaining much weight
-- Uncoordinated large motor movements 
-- Often complains that she's "a little bit dizzy"

Ben's, Jem's, and Eliza's symptoms, disparate as they were, had these four things in common:
-- were cyclical, and arrived in clusters (rarely just one symptom at a time)
-- were worse in fall/winter/spring
-- symptom cycles were accompanied by loss of appetite/picky eating
-- symptom cycles were accompanied by The Lip Rash From Hell

It’s hard to imagine that you’d want to eat if your lips felt as painful as Eliza’s looked.

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But I absolutely needed Eliza to eat, because I couldn’t think of any medicine more important for her ailing body and brain. As we did when Ben was so ill, Jeff and I eventually determined that we had to feed her three times per day, and we had to make sure that her insanely picky “preferences” didn’t distort our judgement concerning what and how much she should eat (her choice of teaspoon-sized servings were obviously not on track for nourishing her growing body.)

I also felt that we must try to address some of the underlying factors driving her pain and suffering. (At that point I had no idea about the mold in our basement, and now I think Eliza may be quite sensitive to mold.) I did realize that her immune system was malfunctioning in a big way, and my protocol - using supplements that I re-encapsulated into little bitty pills so that Eliza could swallow them - focused on normalizing her zinc levels, and using specifically anti-viral substances to help her body with what I imagined were raging chronic infections. As when Ben was sick, I felt it necessary to remove “addictive” food items from her diet - the ones that she would fixate and obsess about while ignoring all the other foods on her plate.

Around this time, my midnight googling sessions turned up a fascinating case study from over thirty years ago, concerning a young woman who had died due to complications with anorexia nervosa. During an autopsy, it was found that her brain was completely infected with otherwise asymptomatic herpes - a virus which is now sometimes associated with eating disorders.

It is certainly true that all of my children have strange manifestations of various viruses.

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Over the winter and spring of 2016, Eliza began eating more and more normally, although we were still feeding her. During the spring and summer, when Eliza turned four, I was cautiously optimistic. I continued giving her supplements, and after we moved out of our house, her eating was more normal than it had been in many months. Also, she started feeding herself. I began to breathe more easily, and even relax sometimes, since I wasn’t constantly preparing for tantrums.

But last fall (O, deadly time of year! Why do my children’s symptoms always worsen then?! Was she exposed to mold? Other allergens? Damp/Cold Weather??), Eliza began to feel Not Good again. There was a sharp uptick in her picky eating, and in November she had a tantrum for the first time in six months. After that, it was the nightmare all over again. She didn’t want to eat. She was SUPER hungry! But she hated all food I prepared. She just wanted GOOD food! And once again, even her “favorite” foods were being consumed in very small quantities. She would wake up in the morning and scream, sometimes for three hours, for tiny perceived “reasons” that made no sense. She was obviously hurting, and I didn’t know how to help her, and she was making our days (or at least our mealtimes and mornings and afternoons and bedtimes) a living hell, what with her complaining, whining, arguing, refusals to eat, and massive tantrums.

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It’s hard to explain the stress involved in determining a sick child’s optimal food intake requirements, and how difficult it is to figure out what is “normal” when the situation is so abnormal. When is it okay for her to eat less, and when should she eat more, and what if we are making the wrong choices even while hers are too screwed-up to trust? A basic bodily function like Eating is supposed to be guided by an individual’s intuition, not years of concerted effort and research and stress by an untrained, short-staffed Feeding Team of two.

Back in 2015, I wrote: “Most people have no idea what Eliza can be like at home, and when I tell them, they don't believe me. Why should they? At the moments when my PTSD is flaring, my nostrils are practically smoking, and I'm describing Eliza's explosive behavior/screaming from the night before, the other person is watching my giggling, chatty daughter...who is wearing three dresses, eight headbands plus bows in her hair, and is by all appearances a smiling, laughing, socializing, Normal little girl. It is nearly impossible to imagine this girl sitting on the basement floor, screaming and kicking the concrete for an hour while repeating ‘I’m HUNGRY! I WON'T EAT! I DON'T NEED TO PEE!! I’m HUUNNNNNNGGGGGRRRRYYYYYY!!!!!!’ approximately 37,000 times.

“Even Ben gets annoyed. ‘People really don't understand about Eliza,’ he observed. ‘They think, “oh, yeah, she screams a little…” But really she screams a TON! And I want people to KNOW how bad it is, so that they understand!!’

“As Ben spoke, I remembered a few days prior: standing in a neighbor's kitchen, watching our three-year-olds cavort and play, trying (hours after the incident) to recover my poise following a truly horrific bedtime tantrum. ‘Sarabeth,’ my friend said, referring to the Behavior Issues I was attempting to detail for her, ‘I have to say, I just don't see it!’

“I told Ben that I knew exactly and totally what he meant.”

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By the time New Years 2017 rolled around, and Eliza was once again screaming hours per day (things like “I’m HUNGRY!! But I won’t EAT!!!”), I remembered that - in November - I’d stopped giving her the zinc/B6/etc. supplements. I hadn’t wanted to overdose her! And that was when her latest backslide had begun.

So I re-started all her pills, and in addition I:

1. removed all "addictive" foods from her diet (meaning, the few foods she would gorge on if given the chance - mostly things like plantain chips, sweet fruit, etc.). We insisted that she eat three very well-balanced and carefully thought-out meals per day, which we fed to her in normal kid serving sizes as best as we could determine.

2. completely removed dairy from her diet. She's never even eaten gluten, but I'd never tried a no-dairy experiment till now. (My mom and I both have strange, non-digestion-related but apparently symptoms of dairy allergy, so I figured it was worth a try.)

3. completely removed supplemental fish oil/cod liver oil from her diet. (This has to do with the liver function of a person who is chronically zinc deficient, and enzymes that are lacking to break down omega-3 fatty acids.)

4. gave her a few-weeks-long round of my anti-herpes supplement protocol.

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I am very careful about Eliza's diet.

I used to worry that such food fixation would lead to more disordered eating. But after our experiences with Ben, I only worry about this occasionally, because Ben’s crazy/severe symptoms were only finally healed after years of Thorough - some might say Extremely Obsessive - attention to diet and feeding. Today he enjoys and consumes a huge variety of healthy foods, eats when he’s hungry and only till he’s full, and has only distant memories of back when he was “so sick I couldn’t eat.” I now believe that the mainstream eating-disorder community ignores quality-of-nutrition during refeeding to their detriment, since so many Standard American Foods exacerbate underlying sickness.

At this point, we eat a diet meant to be gut-healing and -maintaining, consisting of organic meats, organic vegetables of all types, fermented veggies every day, and “safe starches" as per Paul Jaminet ("Perfect Health Diet"), like white rice, sweet potatoes, potatoes, plaintains, cassava, etc. We eat no grains other than rice, except for VERY occasional popcorn. We eat lots of fruits, limited nuts (like every couple of weeks or so), and pastured eggs. We do not eat any soy, sugar, industrial seed ("vegetable") oils, improperly prepared rice products (commercial gluten-free packaged products), etc.

I have Eliza on a modified Walsh protocol to remedy what I believe is an inborn inability to utilize zinc properly. This is basically a large daily dose of zinc picolinate, plus co-factors (B6, P-5-P, selenium, etc.). Plus evening primrose oil, and a couple of other things. At this point, I imagine she’ll continue taking these supplements indefinitely.

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Over a period of weeks after New Years’ 2017, Eliza’s tantrums died down considerably, and a bit of color and plumpness came into her sallow cheeks. Her muscle tone was definitely better. But we stopped spoonfeeding her after awhile. She was nearly five years old! Surely it was time for her to hold her own fork? It was driving us crazy. She must be better enough to guide her own food intake…right?!

And she was a LITTLE better able to do so. She wasn’t refusing all food, and she was eating a LITTLE bit more of her less-favorite foods (i.e all foods that weren’t starchy or sweet). Importantly, she was better-enough to engage in positive little-kid activities, like Playing, in between bouts of Mealtime-itis.

We went along like this until April.

She once again started having a really hard time eating - this time it was especially breakfasts, and I thought maybe a hard-ass approach would work even though it never had before. “Just EAT!” I said in frustration one day. “Or else you can sit with your food until you finish it.” Every morning after that, she sat miserably next to her food, saying how hungry she was but not eating anything except microscopic bites, for four hours - until lunchtime began. This continued for weeks, until the day in May when we drove up into the mountains, and it struck me how skinny Eliza looked, and how instantly cold she became when the weather got chill. That night, there were snow flurries. We were all wearing our winter jackets, and I handed Eliza’s to her because she was shivering and whining and freezing.

But she refused to put it on, which didn’t make any sense. She was cold! She used to love ANY excuse to change her clothing! She was such an incredible pain in my ass. I wanted to slap her. I didn’t, but I really wanted to.

Frustration can be a blinding emotion.

“I won’t wear it!” she said petulantly. “It’s puffy, and I hate it, and it makes me look fat! I ALREADY think I look fat and ugly, and I won’t put it on.” I looked down at my angry, skinny-as-a-rail, ailing child, whom nobody would ever describe as fat (besides which I have never even once made reference to the POSSIBILITY of a person worrying about being fat, because I came of age in the nineties, when we learned how to have a good body image, goddammit! How could my daughter be saying such crazy things?!)

That night, tears streaming down my cheeks after a dinner during which Eliza claimed to be hungry but ate only one bite of food before saying she was full, I realized we must spoonfeed three meals per day For As Long As It Takes.

When I told her this the next morning - how she needed to eat her breakfast, but that from now on, Papa or I would help feed her if she needed - I could see her bony shoulders visibly relax.

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An interesting article in The Atlantic summarizes the recent history of eating disorders. For many years, it was “family dysfunction that psychologists believed lay at the heart of the disorder. Parents were told not to be the food police, that anorexia was a misguided search for control. Only when they let their child be fully in control of their own life would the anorexia resolve.

“Psychiatrist Walter Kaye wasn’t convinced. …’I was just kind of struck by how homogenous the symptoms were,’ he says. Because the patients seemed so similar in terms of symptoms and temperament, he believed there had to be something in their biology that was causing anorexia – and he dedicated himself to finding out what it was.

“In the early 1980s, anorexia had been seen by the medical community as a deliberate decision by a petulant teenage girl: She was selfish, vain, willful. Since she had chosen to become ill, she simply needed to choose to get better. She needed to become a fully formed individual, to separate from her family and rebel against the cultural ideal of thinness at all costs.

“… Although the exact circumstances that trigger the onset of anorexia aren’t clear, nearly all cases begin when a person fails to meet their energy needs, placing them in a state of what researchers call negative energy balance—burning more calories than they eat. For some, a weight-loss diet precipitates the eating disorder; for others, it’s increased sports training, a growth spurt, an illness, decreased appetite from stress, even new braces.

“For most people, being in a negative energy balance is profoundly uncomfortable. That’s why dieting often makes people impulsive and cranky, ‘hangry’ even. But those with a predisposition for anorexia have a completely different experience. Starvation makes them feel better.

“…Mission accomplished, or so it seems. The problem is that the brain fights back, increasing the number of receptors for serotonin to wring every last drop out of the neurotransmitter that is there. This increased sensitivity means that the old negative feelings return, which drives the person to cut back even more on what they’re eating. Any attempts to return to normal eating patterns wind up flooding the hypersensitive brain with a surge of serotonin, creating panic, rage and emotional instability. Anorexia has, in effect, locked itself into place.”

“In healthy individuals, determining what and how much to eat is controlled by a variety of factors, including what’s available, how much it’s liked and how hungry the person is. Not so in anorexia. …[Kaye’s] results may indicate how [anorexic patients] are able to continue starving even while food is plentiful, since people with anorexia find food less rewarding and thus have less motivation to eat. Tests also showed a preoccupation with future harm at the expense of what might be needed in the present moment.

‘One reason that people with anorexia are able to starve themselves is that when they get hungry, the parts of the brain that should be driving reward and motivation just aren’t getting activated,’ he says.

“[In a patient] considering whether or not to take a bite of banana…the brain areas responsible for worry kick into overdrive. The result is that [the patient cannot hear] the small, quiet part of the brain telling the person with anorexia it is okay to eat the banana.”

“[A counselor] plays an audio recording of one of her former patients re-enacting the anorexic thoughts that tormented her while she ate—it is an endless stream of ‘I can’t eat this. I’m going to get fat. I’m ugly. I’m disgusting. I’m weak. I hate myself. I can’t do this. I’m so pathetic, just pathetic, a weak pig.’ It goes on for more than 10 minutes.

“Parents, many of whom had walked into the program frustrated and angry at their child’s seeming refusal to eat, hear the recording and the sheer amount of ‘noise’ that their children endure and their anger dissipates.”

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I believe that in most cases, physiology comes before psychology or a psychiatric diagnosis - in other words, what we feel and experience in our body _over time_ leads to what we think and how we behave. A lot of my other thoughts about eating disorders are confused.

I think that most cases of anorexia start with something that impacts the gut - a stomach flu, or a stress response that gets overwhelmed, or maybe a bout of mono, or perhaps some infection that ravages the gut and makes everything just feel Not So Good. One logical response (as noted by the researchers in the Atlantic) is loss of appetite, especially if the illness causes problems with chewing, swallowing, and/or digesting.

But what if the underlying illness doesn’t heal, for whatever increasing number of possible reasons in this modern world? What happens inside the human brain when something as normal and necessary-for-living as EATING becomes chronically physically difficult? The psychology looks different in different people. A baby may scream, or refuse to nurse, or refuse a bottle, or be unable to sleep for more than forty-five minutes at a time. An overweight teenager who’s already struggling with her body-image may now find it easy to “choose” to lose weight by eating much less than normal. A slim teenager, aided by her now-especially-screwy neurotransmitter production, may actually look in the mirror and “see” that she’s “fat,” thus justifying caloric restriction. A type-A personality may notice a loss of appetite, and the initial “high” that can come with fasting, and in Type-A Fashion she concludes that not-eating is her new Thing To Succeed At.

In some cases, a person might go to the doctor complaining of “loss of appetite” among other symptoms, but it is often difficult for an anorexic to take charge of her own treatment - at least at first. (Best case scenario for an eating disorder patient is for all underlying conditions to resolve on their own, allowing normal eating to resume sooner than later, with no lasting damage.) Meanwhile, a young child is especially unlikely to be able to explain her or his lack of desire to eat, and so at first s/he just says defiantly: “Yucky!” “I’m not hungry!” “I hate that food!” “I hate eating!” A young child is especially likely to have his or her illness catered to, sometimes for years, simply because the whole thing is so inexplicable (why _wouldn’t_ a hungry child eat? Maybe my cooking is bad! Maybe I’m not giving her the types of food that’s best!). I believe there are many closet anorexics disguised as Very Picky Eaters. Take away their five favorite foods, and you find a child (or even an adult) with a severe eating disorder.

Few anorexics eat nothing at all. But how little is too little? And when should family members intervene, and how, especially with all the conventional wisdom floating around about how you should cultivate your child’s self esteem by allowing them to make their own food choices?

And here’s where we arrive at the catch-22 in the development of this potentially deadly mental illness. Food absolutely must be eaten in order for the patient to heal…but by the time an individual begins limiting his or her caloric intake (and the “eating disorder” psychology becomes evident), the underlying disease/physiology is already in full swing, and is usually misunderstood or ignored. Is it any wonder that many treatments aimed only at changing psychology/behavior do not lead to a cure?

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Western Medicine offers little help when it comes to understanding and treating the causes of eating disorders, but doctors sure have come up with a lot of diagnoses! Just google ARFID (“Avoidant/Restrictive Food Intake Disorder”) if you want to feel sad and exhausted.

But some people offer potentially helpful and innovative treatments for those with resources to participate. This clinician discusses an approach that takes into account the "Food Allergy Addiction Complex”:

“…Often, people with delayed pattern food allergy or other food-related illness are abnormal eaters. Most people report sugar cravings and/or bingeing… Cravings for milk, bread, cheese, peanuts, fruit, or potato chips are as common as cravings for sweets. Even people with obvious milk allergy, who have a protective aversion to drinking milk, will compulsively eat cheese or ice cream, thereby maintaining their milk-allergic illness.

"The term ‘addictive food allergy’ was suggested to describe the connection between compulsive eating and illness. Among our patients, there is a consensus that eating-control is difficult to achieve, even when wrong food choices involve serious illness. The consensus is also that some foods trigger compulsive eating, uncontrollable by ordinary acts of consciousness. The gratification is short-lived and is followed by discomforts and depression with renewed cravings. In intense bingeing cycles, you can hardly wait to finish the first food you are eating to get to the next, and the next….

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So here we are, right now, approaching another autumn with a bit of trepidation on my part. Eliza is a lot better now than she was over the past two New Years’s, and if somebody feeds her (very distractible, fidgety, slow-chewing, complaint-filled self) during every meal, she is eating enough food. I hope that this highly nutritious food, plus the supplements she takes, are slowly bringing her to the point of vanquishing both her unpleasant physiology and the unfortunate psychology that is developing along with it. I wish there were more guaranteed action steps.

She is obviously not yet Well. She often feels tired and anxious and suffers from all sorts of maladies, while her comments about her legs looking “fat,” or how she doesn’t think she looks good in certain pants, are just gut punches for me.

I WILL keep on reading, and trying to understand, and reinforcing my anger at her illness so that I can focus love on my little girl.

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Two Stories By Eliza

Once upon a time, there lived a king. And there was a queen, and there was a princess and another princess, and a prince, and another prince, and another prince and another prince and another princess. They had neighbors, and they liked to play with them, and the king and queen liked to talk, and there were servants.

And then they went camping, and there were five servants. They cooked and stuff.

And they LOVED to climb trees, the princes and princesses, and one day they ran and ran and ran, and they ran back to the castle, and the parents had to cook them a nice cake pie and some bacon and popcorn, and after that they took a hike, they took a walk, they climbed trees, they talked, and then they noticed they could fly! And then they flied and flied and flied and flied and flied and flied! And then they lived happily ever after.

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Once upon a time there lived a girl named Eliza, and there was Ivy, Ben, Jem, Mama, and Jeff. And she helped cook, and she could ride her bicycle but one day when she was riding her bicycle she fell off of her bike.

But she loved to cook and she cut up stuff and they lived happily ever after.

The end.

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Love,
Sarabeth