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 Nuance Between a Responsive & Behavioral Approach to Feeding Therapy: Part 2

Part 2: The Case For a Responsive Approach to Feeding Therapy (Missed Part 1: Applied Behavior Analysis (ABA) Professionals & Feeding Intervention? Find it HERE.)   Drawbacks of Behavioral Methods in Feeding Therapy Practitioners who use behavioral modification methods in their therapy sessions do so because they believe them to be useful tools for achieving their agenda of getting a child to eat. I have worked with therapists who use them, have been directly referred patients from inpatient behavioral feeding programs, and have seen many behavioral protocols that parents have been asked to follow within these programs/therapies. My core belief system rejects the idea that it is my job to “get” a child to eat, and therefore it is not necessary for me to use any tool that may cause anxiety in child I am treating, which is often the case when these methods are used. I have heard ABA clinicians use the term “break the child” in reference to the point in therapy where a child ultimately gives up and begins complying with “taking bites” in therapy; this smacks of dehumanization and is cruel, in my opinion. Another explanation for “giving in” could be found in trauma theory. Research is needed to examine if giving in and eating is actually a trauma response. “When the dorsal vagal nerve shuts down the body, it can move us into immobility or dissociation”…that comes after “fight or flight”, where a child is trying to avoid eating whatever the adult is presenting. A child who ‘zones out’ after fighting tooth and nail to avoid something they perceive to be dangerous is not ‘complying’. They are...

Five ways facilitation can turn into pressure with extreme picky eating

1. Offer opportunities to sample new foods in a low-pressure environment such as Costco, Trader-Joes or other stores with samples. facilitation: “I’m glad you liked it, I’ll pick some up next time I’m at Kroger (Walmart, etc.). Can you help me find oranges?” pressure: “Okay, but there are 64 of them and you promise you’ll eat them all if I buy them?” (“I will!” he insists, but you still have 62 of them a year later…) 2. Your child eats some gnocchi with pesto off your plate at a restaurant. facilitation: Offer to put a few on his plate (if you are comfortable with it he may continue to eat them from your plate for now if he doesn’t want them on his plate). Maybe pick up some gnocchi later in the week or offer pesto with pasta as an option the next time you serve spaghetti. (You could try to ask what he likes about the dish, the pesto or the gnocchi, but keep it casual and change the topic. Consider not drawing attention to it if your child is super sensitive to any interest/focus on his eating…) pressure: On the way home you go to a store and buy two packages of gnocchi and three jars of pesto, telling your son, “We’ll have it again tomorrow since you liked it so much! We’re so proud of you that you added a new food!” 3. Offer a paper napkin with meals so your child can spit food out (get food out of their mouth without gagging or vomiting). facilitation: Place the napkin next to each setting, or have a child...

When You Worry That it Won’t Work: Lessons from Responsive Tube Weaning (Guest Post 2)

This is the second part of our series around using Responsive Feeding Therapy when the stakes are the highest.  Our first guest post from Heidi Moreland from Thrive by Spectrum Pediatrics can be found here. When You Worry That It Won’t Work Elisabeth Kraus, MiT; Becky Keifer, MA-SLP, CCC; Lisa Grentz, RD Growing Independent Eaters I’ll never forget that phone call.   I was speaking with a mom who had spent the last years trying to be everything, and everyONE, that her little girl needed. A dietitian herself, she wept as she told me that she never imagined that her child would struggle to eat – struggle badly enough to require tube feeding in order to grow, in order to stay alive. And here they were, years into their journey, her daughter eating and drinking nothing by mouth, all while she tried to function as dietitian, nurse, doctor, feeding therapist, house cleaner, chauffeur, cook, and everything else that you can possibly imagine. Nothing, she told me, was helping her daughter learn how to eat, and she was exhausted – tired from the years of trying to do it all.  “I just want the chance to be a mom,” she said. “I’m don’t think I can keep doing it all.” I’m not sure if she knew, but I sat on the other end of that phone call, crying myself as I recognized so deeply the pain she felt. She wanted her baby to be okay. She just wanted her baby to eat, not just because she had to, but because she experienced the wonder of family mealtimes and the food...

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...

What is “Responsive” Feeding Therapy?

Responsive feeding therapy is facilitating (re)discovery of internal cues, curiosity and strengths, while building skills (mastery).   “You don’t teach development, development is discovery.” Serena Wieder PhD (video on DIR Floortime)   Responsive therapies respond to each child, meeting the child where he or she is, not following a strict protocol without deviation.         By necessity, this occurs within a relationship. The primary is between the parent and the child, otherwise known as the “feeding relationship.” (Satter, Chatoor…)     Responsive feeding and feeding therapies also happen in relationship between the child and any adult feeding or providing food and meals to the child, and with any therapists involved in more formal therapies.     “Happiness is the most important factor at mealtimes and in therapy programs to help children develop feeding skills.” Suzanne Evans Morris SLP PhD Therapist and author, Pre-Feeding Skills     What do you think? What do responsive feeding therapies mean to you? Share this...

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