Feeding Disorder

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    Lindsay Ensor

    Our Son's Experience With Avoidant/Restrictive Food Intake Disorder

    The DSM-5 (a manual that lists all psychiatric diagnoses, which medical professionals use) states that “avoidant/restrictive food intake disorder (ARFID) is an eating disorder involving an extreme avoidance or low intake of food that affects growth and level of nutrients a patient receives.” My 15-year-old son has struggled with this for many years, but we just recently realized it was getting bad enough that he needed formal treatment. He has many oral aversions, a severe gag reflex, and in addition, has over 20 food allergies. This makes it difficult for him to eat. He also has general fears of food and mealtimes. He was losing weight rapidly and his growth was stalling, so we made an appointment at our local Children’s Hospital eating disorder program. Based partly on an article from Julie K. Lesser, MD, on the National Eating Disorders Association (NEDA) blog, here’s a few things we learned. We always thought our son was “just” super picky and had fear around food because of his food allergies. We learned that picky eating and ARFID are similar but ARFID, as noted by NEDA, carries with it much more physical and mental distress during feeding. His psychologist told us right off the bat that someone with ARFID may have difficulty with the ‘bite, chew and swallow’ mechanism most people’s brains don’t even think about. Many can even gag or choke in response to eating something that gives them high levels of anxiety. In the DSM-5, ARFID used to be classified under feeding disorder of infancy or early childhood, or eating disorder not otherwise specified (EDNOS) but was recently recognized as its own illness. We didn’t recognize the serious health issues that ARFID could cause. Our son was actually malnourished at his first intake appointment with his eating disorder doctor. We had no idea. We knew his growth had stalled but had no idea of the severity of this disease when it came to nourishment. One of the most common side effects of ARFID is the significant weight loss, or failure to gain weight and grow for those who should be in a growth spurt, which is what triggered us to have him seen but the reality that he was literally starving hadn’t crossed our minds. He required prescription-strength meal replacement supplements and vitamins and minerals just to get back to a healthy baseline. Having struggled with an eating disorder myself for over 20 years, I was surprised that his had nothing to do with body image or perception. Even though he was losing weight, he wasn’t concerned with that. In the aforementioned article for NEDA, Julie K. Lesser, MD says, “The lack of a preoccupation with body image or a fear of gaining weight is one way that ARFID differentiates itself from other eating disorders, such as anorexia nervosa and bulimia nervosa.” Even though the preoccupation with weight and body image isn’t there, the medical consequences may be just as severe. ARFID is most often diagnosed around the age of adolescence, but there is some occurrence in adults. Typically, adults have had issues for many years and just don’t seek treatment until they are older. NEDA also mentions how it may be more commonly diagnosed in males. It is often perceived that eating disorders are a “women’s disease”, but that is very much not the case. ARFID has so many symptoms. It is so much more than picky eating and weight loss. According to NEDA, “with ARFID, foods may be avoided based on physical characteristics such as texture, smell, and appearance, or based on past negative experiences like choking or vomiting.” ARFID patients often limit food intake to particular textures; particularly starches and crunchy foods. These foods digest easier and cause less of an upset stomach. It’s nothing for our son to suddenly feel full around mealtimes (avoidance). Also, due to nutrient deficiencies, dizziness or fainting and even fatigue can be a real issue as their bodies have little fuel to run on. Things like feeling cold all of the time and sleep disturbances are also common, as they are with most eating disorders. Even though ARFID is a newer diagnosis recognized by medical professionals, there are plenty of treatments already in place as it used to be categorized under EDNOS. When we go in for treatment, our team consists of seeing a medical doctor for things like labs, heart checks and weigh-ins, a nutritionist to help us come up with and stick to our meal plans, an occupational therapist to try and deal with the oral aversions and fear of choking/gagging, and also a psychologist to work through the behavioral treatment process in hopes of learning and using skills that align with dialectical behavior therapy (DBT) and other related techniques to hopefully achieve a full recovery. Some people may grow well into adulthood eating only a handful of foods and use supplements in their diet to make up for nutritional deficiencies. Some patients will be able to fully use their skills to eat a more well-rounded and balanced diet. Our son eats only starches, foods that crunch and a couple of meat products fixed one specific way. He totals less than 10 foods that he will eat right now. We are hoping that through his treatment and therapy with a selected few eating disorder professionals that he will regain confidence in himself and his ability to eat food so that he can go on to lead a healthy, social and well-rounded diet in his life.

    Community Voices

    Just 5 Minutes of Peace, Please

    Just 5 Minutes of Peace, PleaseBy: Gail Hamblin     Here it comes. I feel the wave of stress reaching it’s apex as simultaneously my youngest is yelling from the bathroom that she needs help wiping her back end, the middle child sneezes a giant mess to which he can’t wipe because of his diminished self-help skills, the oldest needs homework help right this instant, the dog is eating someone’s brand new sneaker, the chicken cooking on the stove is burning and the hubby is nowhere to be found. These moments occur more frequently than I would like to admit.  My fists clinch and I feel all of my muscles tensing up.  Sometimes there is a loud noise emanating from my mouth or I mumble as I prioritize all the wrongs that need my attention at the same time. I know most moms know what I am talking about. But, our house is a little different. We live with therapy two hours daily, medical appointments galore, feeding disorder difficulties, Down syndrome, autism, FPIES, and a host of other diagnosis.      Some days it is all too much.  I grit my teeth, try to suck it up and move forward. I don’t have to be happy about it.  But, I have to move forward.  In these moments, I have a recurring phrase that I say to myself and I know it comes out in mumbles too.  “Just five minutes.”  Can I get just five minutes to myself of peace and perfect alignment of all things in my view? It is not much to ask I try to tell myself.  I am a good mom. But, here is the kicker ladies and gentleman: life is not fair. Life has never been fair and it never will. If it were fair, no child would have to suffer. I would not have to see my special needs mamas lose their children one by one to some disease, cold or diagnosis. I try to tell myself that I am lucky because I still have my children here with me. Who am I to complain about trials and tribulations when there are dear friends who can not hold their babies? I try not to complain but I don’t always succeed. I get through the sleepless nights of care-taking by telling myself this is temporary. This season of life will be over soon and I will miss the time they were little. So, for now, I need those five minutes every once in a while to snap me back into reality, give myself some grace and try to handle the load better the next time the wave of stress comes near. Couldn’t we all use just five minutes?

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    Community Voices

    The decision

    Over the past 7 seven years my life has been an onslaught of one difficult decision after another. It was this decision or that decision? Should we or shouldn’t we? At first they were simple. Quickly the complexity evolved into the profound: should we take over my mother-in-law’s affairs? Should we pursue genetic testing? Should I request a leave of absence? Should we move to Iowa? Should I resign from my teaching job? Should we leave Illinois? In all honesty, “should I become a mother” was the only question that I knew the answer to immediately.

    In fact, on the day we decided to “start trying” Rich was laid off from his job. It took us several years to get pregnant. It was once we quit trying that she was gifted to us. Sophia Irene Curtis was born on August 9, 2012. A bustling 6 pounds 8 ounces, she was born every bit a diva from the moment she entered the world. Everything about the pregnancy was normal. It was the delivery that took too long. After many hours of laboring she was born via emergency c-section. She lost some of her birthweight like many breastfed newborns yet quickly overcame these challenges.

    It was early on that the tremors started presenting themselves. Naive, being a new parent and new to ADULTHOOD after an extended college tenure, I had no idea that these minor “hiccups” were really foreshadowing the chaotic events which were to come. By November of 2013 life had begun its tailspin. We lost our dear Karen, followed by the first of several strokes that would knock Rich’s mom off her feet.

    By January 2014 our world began spiraling out of control. Rich’s mom continued to struggle with her health, wandering outside during a polar vortex. By the grace of God and the good faith of a passerby, she was returned to her home. She reported she had simply gotten lost while trying to find her neighbor’s house. She had lived there for 42 years. The tremors continued. Our struggles with Sandy were replaced by grief after the death of my mother’s best friend, Linda.  I remember traveling to the funeral on, or near, Rich’s birthday. We stood in the church surrounded by hundreds of people we knew wondering, “can it get any crazier?”

    It did. We returned home to sickness and pneumonia. See children, once ill with an upper respiratory infection, are more prone to repeat illness. For Sophia that was the case. she was my chronically sick with a cold child. In particular since I taught middle school and she attended daycare full time. It was during this time I learned my love of protocols and checklists putting them in play when the slightest symptom would present itself.

    While she never required hospitalization, she did have pneumonia three times before the age of two. After a series of allergy tests and visits to the pulmonologist she was diagnosed with “Reactive Airway Disease” and given an asthma action plan. We grew complacent, we had our routine down pat. Everyone changes clothes upon arriving home. Followed by showers, immediately don pajamas and eat dinner in them. The cool mist humidifier was set, vapor rub applied to neck, chest and feet while the head of the bed was elevated to eliminate postnasal drip. Follow this checklist along with nebulizers containing albuterol and budesonide every 4-6 hours until oxygen levels would improve. This was our life during the winter months. We thought it was normal. Everyone with a small child and an ill, elderly mother lives like this.

    We had no idea the number of truly life changing decisions that would come in the months that followed. As Sophia grew and thrived, Sandy’s health began a downward trend. Months after announcing my pregnancy with Charlie we would learn of her first of several necessary, medical procedures. During these months, filled with trips to the hospital, Sophia was there, a small silent witness to all the events, conversations and decisions that transpired. She was there when I took Sandy to the emergency room because she was having a heart attack. She has always been there to witness it first hand. She continues to witness it now with her grandmother and brother.

    When I speak with people regarding my decision to leave teaching, it is often assumed it was to be a better advocate for Charlie. Believe me that did drive a part of it. The larger, greater influence were the needs of my daughter. See as the sibling of a medically complex child, she is often asked to wait, be patient, please just compromise, usually resulting in her settling for less. She is usually the subject of disappointment, at the fault of no one, yet resulting because most situations are extremely overwhelming for her little brother.

    Sophia is the sibling of a disabled child, resulting in her own set of incredibly complex needs and some very real social anxiety. When making “the decision” it wasn’t the decision to be a teacher or an advocate. I wasn’t choosing between myself and them. I was choosing to be a mother to both my children. I choose to fill both their needs because being a medically complex child with a feeding disorder is tough. Equally challenging is being the typically developing sister of a medically complex child. A wise friend once told me that “you can only be their mother at this age once.” I will always be a teacher, but I can only be their mother, filling their needs this once. It was the decision to be an amazing mother to both my children, that is what I chose.

    Community Voices