Sometimes kids don’t eat. I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?) I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills. Some kids require being fed through a g-tube. Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day.
Sophie and Alexander both eat a small variety of crackers and chips. Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers. Alexander prefers BBQ Pringles. They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up. Cold drinks bother him. They also both refuse nearly all fruits, vegetables, and meats. The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats. We call them squeezies. Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off. He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny.
Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012. Yada yada yada, it’s now August 2013. Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie. She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6. For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program. We hope that Sophie can learn to eat and that we can learn how to help Alexander as well.
Sophie is allowed only 4 ounces of chocolate milk in the morning at home. Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror. During week 4 Mark and I will begin training to feed her ourselves. In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids. The plan is extremely regimented, time consuming, and exhausting. It is also extremely successful.
Tuesday was Day 1. The lead feeding therapist (we’ll call him P.) and I observed as Mark attempted to feed Sophie. This gave P. an insight into her food avoidance behaviors. The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam. Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital. Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students.
On Day 2 P. introduced the rules to Sophie, which are pretty simple. Eat your bite = get to play with your preferred toys and receive praise. Don’t eat = you will be helped to eat. Keep rejecting food = no play. There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first. If noncompliance continues, then they might use hand over hand to get the food in. If that doesn’t work, then blocking her hands or even techniques to open her mouth may be used. All of these techniques are discussed with us before they are implemented. It is hard work for our little girl.
Her meals consist of a few different foods that are in Styrofoam cups off to the side of the therapist. She is presented only one bite at a time so that she is not overwhelmed by the sight of the entire meal. Sometimes the spoon or fork will have food on it and presented on a plate. This minimizes the work she has to do so she can focus on eating. Other times she must get the bite from the plate to the utensil herself. A lot goes into good wrist movement, hand control, and coordination. Sophie still struggles with this.
For the first few days Sophie was presented her preferred foods. She was given her favorite toys and bubbles when she complied. This allowed the therapists to earn her trust. Then, slowly, food she used to eat but has lately refused (such as macaroni and cheese & hotdogs) were added. To our shock and great happiness, she complied easily. Today is the last day of week 1 and my first day alone with her without Mark. He prefers to drive into the city despite the heavy traffic. I prefer the trains, so off we went! I appreciated so much the kindness of strangers who held doors, carried our bags, and engaged her in conversations.
At her first feeding P. introduced bananas, which is something she has NEVER eaten. She ate the first bite and I fell off my chair. Then it got real.
These are only a few of Soph’s avoidance techniques.
She successfully avoided or spit out pieces of banana many times during meals 1-2. The bites got smaller and smaller and P. mushed them up to the consistency of pudding to make it as easy to eat as possible. The first time he took her toys away she did not cry, but she was shocked. She didn’t say a word but she looked at him as if to say, “What the heck is going on here?” At this point, if a bite got in regardless if she spit it out, she was praised and the spitting was ignored.
Using her IEP as a guide, Sophie will have two hours of OT/week. I watched this morning as the OT sprayed shaving cream over a foam alphabet. As I could have predicted, when presented with it, Soph flipped it over. She does NOT like getting her hands dirty. They moved from the picnic table to the floor and tried again. Sophie resisted at first but eventually used her fingers to push out the messy letters, one by one. Her OT is challenging her to work through her sensory issues.
By her last meal with a therapist for the week, Soph showed remarkable improvement towards accepting the first new food. As the bites of banana went in easily, they got bigger and bigger.
The first bite (above) was banana. Her only trouble was handling the spoon. SHE’S EATING BANANA!!! This was followed by play and a bite of mac-n-cheese. We are exhausted and happy.