Finding the Right Fit for Feeding Therapy

My husband I are somewhat picky eaters. I don’t do onions, and he can’t handle tomatoes or cheese. When our son was born we figured he’d be picky too. Yet we were in no way prepared to learn that for some children “picky” doesn’t begin to describe it. Pureed baby foods went fine at first, and he liked Cheerios. However, he showed little interest in most table foods. We expressed concerns to his pediatrician as early as nine months, but until his eighteen month check up we were told, “Wait and see.” Finally, at eighteen months, we were referred to First Steps. First Steps agreed that he needed occupational therapy to focus on feeding. Thus began a long line of feeding therapies... over a year of OT in First Steps, a month-long feeding social group with an OT during that time, a month of feeding therapy with a speech therapist at a children’s hospital, a year-long food program with ABA therapists, and over two years of the SOS feeding approach with both speech and occupational therapy at the same time. During most of that time we were also followed by a “feeding team” in our developmental pediatrician’s office that consisted of a nurse practitioner and dietician.


After about four years of feeding therapy we were left with less foods in his diet and more questions. GI concerns had been ruled out, but of course he spit up constantly as a baby so maybe that was why? He had some clear sensory and anxiety reactions so maybe that was the cause? Had we chosen the wrong therapies? Were we bad parents? Whatever the cause, around the age of six he had dropped the one thing from his diet that we thought was providing him with proper nutrition, Pediasure. Suddenly his diet consisted only of Kroger brand chocolate Cheerios, Combos (the pretzels filled with cheese), and water. We saw a new dietician who, along with his pediatrician, agreed that he needed a feeding tube. In hindsight, if he had truly needed a feeding tube it would have been a blessing to have this option to provide him with nutrition. But at the time, knowing he already experienced intense anxiety with getting shots and up until recently even wearing bandaids, I was panicked thinking of how he would respond to surgery and a tube.


I desperately searched other options, but there wasn’t much available in our local area that was different from what we had already tried, or took our insurance. After some searching I finally found two options that seemed like they might offer us new insight. Cincinnati Children’s Hospital had a feeding team consisting of a GI doctor, speech and occupational therapists, a dietician, and social worker. St. Vincent in Evansville had a similar team, but instead of GI and social work they had a psychologist. Either place seemed like a good option to go and get a second opinion, and St. Vincent even offered intensive outpatient feeding therapy where children would go for therapy five days a week, weeks at a time.


Not wanting to waste any time, and being a fan of second and third opinions, I had my son’s pediatrician refer us to both. In the meantime, we got the amazing news after two rounds of lab work that we could avoid a feeding tube for the time being! However, we were still advised to find a new therapy option to improve his diet, or he may need one in the future. Cincinnati got us in on a cancellation within a month of our pediatrician making the referral. We were blown away by how quickly we got in and how organized and easy the process was. We experienced one of the most thorough evals we had ever been a part of. So, when at the end they told us that he needed to find an intensive outpatient feeding therapy program, we trusted their judgement. They told us about various programs throughout the country. Luckily they felt St. Vincent in Evansville, the closest to us and where we had a referral pending, would be the best fit.


Before we even made it over the Indiana border on I-74 I called Evansville to follow up on our referral. I began the first of many phone conversations and emails with their awesome intake coordinator. The earliest eval we could get was about three months away. In the meantime, we coordinated to get them all of his relevant medical records and she referred us to the Ronald McDonald House for a one night stay the night before the eval. If we were to return after our eval for the intensive outpatient program this is where we would be staying, so it would be a great chance to introduce our son to the house.


Our eval finally came, and like Cincinnati we had an extremely thorough evaluation with a psychologist, speech and occupational therapists, and a dietician. They identified areas of oral-motor weaknesses that we didn’t know existed, and could equally understand sensory and anxiety issues due to their backgrounds. They recommended that we return for 8-12 weeks of intensive outpatient therapy, but spread out instead of all at once. They had found that kids (and parents) were getting burned out if they stayed longer than that. We were sent home with some Beckman Oral Motor exercises to strengthen his jaw and asked to start practicing giving him water, and possibly milk, on a spoon. At the very least, if he could be comfortable accepting an empty spoon from us, that would give them a good place to start when we returned.


At last, five months later we started a four week stay. We had four sessions a day, lasting an hour or less, five days a week. He usually saw one person at each session, either an occupational therapy assistant (OTA), occupational therapist, speech therapist, or psychologist. Meanwhile, his dietician checked his weight at the beginning and end of each week and monitored his food intake. It all started very slowly. They took their time to get to know him and build rapport and trust. At first, they just got him used to accepting a spoon full of water from them. He was rewarded with an iPad or toy for every bite. Then, they introduced strawberry Danimals, a drinkable yogurt. His first task was to take a bite of water on a spoon, and then a bite of the Danimal and then he would be rewarded with playtime in their sensory room. At this point, my husband and I were becoming more of a distraction for him during the sessions. So, we moved to the next room and watched his sessions live through a video monitor. The first time they wanted him to take a bite of the Danimal he didn’t get nervous or upset. He simply refused to take the spoon into his mouth. All the while he was smiling and laughing, talking and singing while the therapist patiently held the spoon in front of his mouth. For twenty minutes. Eventually, with the temptation of the climbing wall in the sensory room and a lot of patience from his therapists, he took the bite!


Thus began a pattern of him increasing his bites and becoming less and less dependent on prompts as he got used to the new foods. A new food would be introduced and the cycle would start over, but each time it seemed to take less and less time. There were exceptions.  For example, after only two sessions of pureed peaches it was clear to all of us that he simply didn’t like them, so they dropped them from the rotation. I appreciated this about as much as anything during our stay. Putting myself in his shoes, I can’t imagine being asked repeatedly to eat an onion, for example. The therapy was intense as the name implies, but we felt as if his life depended on it. He needed to eat well to survive and thrive. And for him, having surgery and a feeding tube would probably have been more intensive, invasive and unpleasant. Again, if he had needed it and ever does in the future, a feeding tube would not be a bad thing. But we wanted to give him the opportunity to change his diet first, and had found therapists who pushed him enough to make progress without pushing so hard that the therapy became aversive.


We were also able to return back to the therapy room and eventually started doing more of the feeding ourselves while the therapists guided and coached us. It was important that we had the confidence to continue his progress at home. By the fourth and final week things were starting to move at a faster pace and he picked up a variety of yogurts and pureed fruits and vegetables. We had also been working on actually drinking the Danimals with a straw, as well as milk and Carnation Instant Breakfast. They also started introducing small bites of solid foods, such as pretzels and crackers, by having him chew it through mesh. This allowed him to try solid foods with less anxiety.
Returning home went better than we expected. After a couple months passed, and we knew we weren’t returning for several more, we were starting to communicate with the psychologist about trying some new things at home. However, we lucked out and were able to spend our spring break week there due to a cancellation. The return visit got off to a little bit of a slow start, but after a day and a half he was back in the groove. We didn’t have time to add as many new foods as our first session, but added a few and strengthened his self-feeding and drinking skills. Returning home this time was even easier than before. Now we feel like we can return for shorter trips and not miss as much school, since he has such a good foundation to work off of.


All of the therapists and staff were so amazing with him and us, and it is difficult to explain just how incredible they are. From the office staff who helped us navigate an insurance change in the middle of our therapy(!), to the tech who prepared his food for every session and taught us her recipes, to the dietitians who monitored his progress and developed a nutrition plan, to the therapists and psychologist who worked with him one on one and helped him exceed his goals, we are so grateful.


I can’t write about our experience without also mentioning the Ronald McDonald House and its incredible volunteers and staff. The house, right across the parking lot from the feeding clinic, provided us with low-cost, convenient lodging. But more than that it gave us a place that we can truly call our home away from home. Smiling faces would greet us and ask for updates on his progress. Volunteers came to the house daily to check families in and out, clean, and cook meals. There was never any shortage of food there! The house had multiple play rooms filled with toys and games, and when we returned for spring break we were able to take advantage of their beautiful courtyard and playground. It was so nice to have a built-in support system with the volunteers and staff and other families. The house asks for only a $10 per night donation, but accommodations are not contingent upon ability to donate. The Ronald McDonald House was an incredible resource that truly sustained and nurtured us throughout our stay.
Our journey is far from over, but we have come such a long way in the past year. Why did this work for us when nothing else did? One of the biggest factors is the amount of time we spent there, focusing purely on feeding with no distractions. It was helpful to have so many different disciplines on the same team, instead of us piecing things together and coordinating communication among different therapists. The therapy was also very organized and structured, and he thrives in an environment where the expectations are clear. Do I have regrets? Yes and no. Of course, I wish that we had found St. Vincent’s earlier. By the time we went for our first four week stay our son was in Kindergarten, and it would have been so much easier to miss preschool. However, I do not regret trying all of the different local therapies that we did. I would certainly encourage anyone to try something close to home and/or more “conventional” first. For many children these therapies do work, and his therapists did nothing “wrong.” Their interventions just weren’t good fits for us. I only wish we hadn’t stuck them out for as long as we did. If I had it do over I wish I had moved on from each intervention about six months in, instead of a year or more. And of note, therapies like ABA, speech and OT offered other benefits to our son even when they weren’t good fits for feeding. All that being said, we went when we did and found success, so I can’t waste too much time on the “what ifs.” We are so happy to be where we are now, and have a lot of people to thank for getting us to this place. Most of all, our son has shown incredible bravery and determination to get to where he is today!
Resources, interventions, etc. mentioned in the article




SOS approach to feeding: https://sosapproach-conferences.com/


Cincinnati Children’s Interdisciplinary Feeding Team: https://www.cincinnatichildrens.org/service/f/feeding




Beckman Oral Motor: https://www.beckmanoralmotor.com/


Ronald McDonald House Charities of the Ohio Valley: http://rmhcohiovalley.org/

written by a Family Voices Indiana health information specialist

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