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...

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...

“What do I say when…” Extreme Picky Eating Edition

A big challenge that trips parents up daily is, as one mom put it, “Knowing what to say in the moment.” Sitting across from a child,  parents often feel pulled into those familiar, but counterproductive patterns: the negotiating, bribing, nutrition lectures, sticker charts, or threats around video game time. When the old patterns haven’t worked, but parents aren’t quite sure what to say, we offer some suggestions that: reduce conflict, build relationships, support appetite (anxiety and conflict can kill appetite and curiosity) and make mealtimes more enjoyable for everyone. These “scripts” can be used flexibly and adapted for different situations. We even recommend parents practice some of the phrases. Here are a few that we include in the book with the reasoning behind them. For more thorough discussion of how to transition to responsive feeding and more script examples, check out Helping Your Child with Extreme Picky Eating. One caveat: If you say something like, “We won’t make you try foods anymore,” be sure you are ready to mean it. This is tricky stuff. Learn as much as you can before you jump in, learn about common obstacles and ideas on how to approach them, know what to expect, consider online support (we love the private Mealtime Hostage group) or get help from a responsive feeding professional. These are just suggestions; adapt and find the words that work for you and your child (be responsive). Acknowledge your child’s feelings. Anxiety often plays a big part in extreme picky eating. If it helps your child, begin by slowing down and acknowledging his feelings. “I’m sorry you’re upset about X.” “I...

Find Your Fit: Your Family’s Feeding Therapy Partner

We recently wrote about how different the feeding therapy experience can be and how confusing it is for parents who may be simply handed a referral. One mom who described the eight months her son was in a behavioral feeding therapy program as “traumatic for us both,” was furious to learn that she had options. Her son thrived after a tongue-tie release procedure and responsive therapies that worked on healing his reluctance (worsened by coercive feeding and therapy), supporting appetite and decreasing anxiety. Most of our clients have “failed” months or years of various feeding therapies. Jenny was the 6th feeding therapist for a 3 year old client she worked with recently who made more progress in six weeks than he had in the three previous years. When you don’t know much about a program, and the website uses language that is confusing, or you don’t get a clear idea of what kinds of therapies they offer, you may need to dig further to find out if a therapist or program is a good fit for your family. Here are some questions you can ask and discussion points (link here: Finding Your Feeding Therapy Partner PDF) Of note, these are complex issues, and we go into this in depth in chapter eight in our book, Helping Your Child with Extreme Picky Eating. Sometimes, even if you are contemplating formal therapies, you can make progress at home. We practice Responsive Feeding and Therapies  with our STEPs+ approach (including links if you’d like to learn more). If this is what you are looking for, here are some suggested questions to see if a potential therapist...

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