Brody’s Journey: One family’s path to tube-weaning and eating by mouth

By: Ashlei Fisher Brody William Fisher was born on July 5, 2015 weighing in at 7 pounds 8 ounces and measuring 20 ½ inches long. He was perfect in every way and still is. He nursed well and took pumped breast milk from a bottle with no problems. He loved baby food when he was 6 months old and ate every drop of yummy fruits & veggies. Around 2 ½ months old, I noticed a dip in Brody’s chest wall as I was about to bathe him one evening. I immediately showed my husband and called the pediatrician the next morning. She had us get x-rays taken and quickly referred us to an orthopedic surgeon. He sent us to get an MRI when Brody was 3 months old. He was diagnosed with scoliosis and needed to be monitored. The curves continued to progress in that time, so the orthopedic surgeon applied a Mehta cast when he was 7 months old. The first cast went well, however his second cast application was extremely tight. Frightening vomiting started and then he quickly stopped eating, drinking, peeing, and pooping. I had never seen vomit like what I was seeing come out of my baby boy. I would give him 1 oz. of milk and he would projectile vomit it all over me and the floor. I rushed him to the emergency room, where they removed the cast. After that, he wasn’t keeping anything down and started to drastically lose weight. We were referred to a GI specialist who did numerous tests and told me Brody had a sliding hiatal hernia, which means...

The Trauma Trap: Impact on Families and Feeding

Trauma: • an injury (such as a wound) to living tissue caused by an extrinsic agent • a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury • an emotional upset   We don’t usually use the word trauma when discussing feeding disorders, but we should.   Children who have experienced significant emotional stress during feeding because of GI discomfort, poor oral control, cardio-respiratory issues, or forced feeding are at risk for disordered behavioral responses around feeding for many months (or years) to come. Infants born prematurely exhibit feeding problems due to neurological and respiratory immaturity and the myriad of issues that can arise while in the NICU. These challenges follow them out of the NICU and into the home, and while being able to go home is a milestone in and of itself, there are many more milestones to overcome when it comes to feeding. “During development, the cognitive, motor, emotional and ‘state’-regulating areas of the brain organize in response to experiences. And in each of the diverse brain systems which mediate specific functions, some element of previous experience is stored.” (Perry, 1999) The infant’s early experiences (good or bad) and their responses during feeding down the road are inevitably linked. Take Nash*, an 18 month old (corrected age) who struggles to get through a meal without gagging and vomiting. Born at 30 weeks gestation, he relied on a naso-gastric (NG) tube for nutrition for 6 months, which involved the trauma of reinsertion when the tube had to be changed as well as the chronic discomfort inherent in the placement of a...

Feeding Therapy Approaches Differ When Children Struggle to Eat: Find the Right Help for Your Family

The article, When Your Baby Won’t Eat chronicles the heartbreak and triumph of one family’s journey with pediatric feeding struggles. The author and mother shares some of the confusion around finding the right help for her family. Virginia Sole-Smith writes, “Do you try to correct the behavior- training a child to eat well –Pavlov Style- or do you try to rediscover that primal urge and trust her to take it from there? It’s a divisive question among the doctors and therapists who work with children like Violet, as well as a debate unfolding consciously or not, around most kitchen tables in the country.” Feeding therapy programs differ; from the ABA, or applied behavioral approach on one end of the spectrum (the Pavlovian approach) where adults may hold a child’s hands down, may use “gentle mandibular guidance” and “escape extinction,” to a more responsive approach where the child’s reactions and behaviors are not viewed as behaviors to eliminate, but as vital communication and clues to guide treatment. Confusing for parents is that many treatment programs, even with opposing approaches, sound the same online, using words like “child-led” and “family-centered” to the point that parents might have no idea what is actually happening in therapy. Parents, we know it is beyond confusing; experts in the field of feeding kids often express opposite viewpoints, with OTs, SLPs, MDs, RDs, PhDs disagreeing on the best ways to treat pediatric feeding challenges. Consider the following sentiments, from folks in positions of authority. Which is “correct”? Never force your child to eat. You’re the parent, it’s the same as with seat-belts, just make them eat it! If your child gags the puree, scoop...

Facilitating (Not Forcing) Your Child’s Eating (Extreme Picky Eating Edition)

“I’m not forcing, I’m just aggressively facilitating…” I was watching a show on Netflix* when I caught this line, “I’m not forcing, I’m just aggressively facilitating.” My ears perked at the words facilitation and force, and of course made me think of children with extreme picky eating, of feeding, and the “aggressive facilitation” that can sometimes happen, even in feeding therapies. There is much research that suggests that when children are pressured or coerced to eat, overall intake, and intake of fruits and veggies decreases.  Here are a few examples… “…approximately half of all mothers and a greater proportion of fathers… ignore the child’s hunger signals and may use force, punishment, or inappropriate rewards to coerce the child to eat. These practices initially appear effective, but become counterproductive, resulting in poor adjustment of energy intake, consumption of fewer fruits and vegetables, and a greater risk of under- or overweight.” (Kerzner 2015) “…stringent parental controls can… limit children’s acceptance of a variety of foods and disrupt children’s regulation of energy intake by altering children’s responsiveness to internal cues of hunger and satiety.” (Brown & Ogden, 2004) Pressure to eat likely disrupts child’s ability to respond to internal cues of hunger and satiety (Carper et al., 2000) Pressure to eat … “exacerbate feeding problems and make mealtimes more negative for both parent and child.” (Harris 1992; Skuse 1993) Pressuring strategies could be implicated in the development and persistence of these problems (Farrow & Blissett, 2008) Pressure to eat predicted food avoidance behaviors: slow eating, emotional undereating, satiety responsiveness (Powell 2011) Parent prompts assoc w/ food avoidant behaviors, correcting for child emotionality and maternal...

Confessions of a Mommy Feeding Therapist

Working with families who struggle to feed their children on a daily basis, I often hear, “Your kids must be great eaters!” or “I bet you don’t have any trouble at the table with your kids!”.  Well, let me tell you, it isn’t quite that simple. As a feeding therapist, I am confident that what I am suggesting to parents will at least help, and not hinder, their child’s progress with eating. When I am working with someone else’s child, I can see their issues objectively. That makes it fairly easy to navigate next steps and to tease apart what may be going wrong. I have done loads of research and reading on the topic, wrote a book, and provide therapy for children from newborns to teenagers. I do trainings for other therapists, physicians, and students. So you would think I would have all the answers with my own three kids, right? Not so much. At home, things are a little more complicated. Do my kids sit at the table and eat at most meals? Yes. Are mealtimes a beautifully harmonious experience where all three of my children eat complicated dishes with a smile on their face? Hasn’t happened yet- I am still waiting. So what does a feeding therapist’s family mealtime actually look like?  Here is a window into my world: Setting:  We eat at our kitchen table for all meals, using family-style serving. I do a lot of “pile-on” and deconstructed meals and we don’t pre-plate the kids’ food. I work full-time and the kids have lots of activities, so our meals are fairly simple, and I get take-out about once a week....

Navigating Relational Feeding in a Medically-Minded World: When Calories Aren’t the Whole Picture

For many families, weekly (sometimes daily) doctor and therapy appointments are the norm rather than the exception. They strive to make everything fit into the schedule, because doing so keeps their child “well”- or at least not sick- and hopefully making medical or developmental gains due to professional, sometimes intensive intervention.  This may be a temporary scenario, or not. For parents of chronically ill or medically fragile children, every day begins with a status check: Is he running a fever? Is she going to hold down her feeds today? Did I give her all of her meds on time? Why is he doing X? Then on to the scheduling and phone calls- to the doctor’s office to sign a request for records to be sent to the out-of-state specialist, to the insurance company to fight yet another battle about payment for the child’s numerous procedures and office visits. For the parents who live this reality, it can be mind-numbing and terrifying all at once. Having a child who is well is the exception rather than the rule. Being truly well, however, is not the same as not being sick. For many kids, they have never been truly “healthy”, as the WHO states: “Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.” What about these situations in otherwise “healthy” children? the baby who screams every time she sees a bottle, but takes a small amount when it is forced into her mouth the toddler who throws up at least once a day after being fed the preschooler who exists on Pediasure because he doesn’t...

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