Author: Gabi Lake

One mom with insider insurance experience shares how she managed to get coverage, plus a sample call script and an appeal template

Navigating insurance coverage for pediatric feeding disorder (PFD) exacerbates the challenges of dealing with a complex medical diagnosis. The ICD-10 code that made PFD an official diagnosis meant getting the green light from insurance is significantly more straightforward today. But many families still face insurance denials.

Anyone who’s ever spent time on hold with an insurance call center or repeated a medical story multiple times to different agents knows how frustrating these calls are. Managing insurance bureaucracy while parenting a child with PFD is exhausting.

Stages of overwhelm are typical for families of children with PFD. Parents of young children in general are often sleep-deprived and stretched thin while balancing parenthood, work and life. Add multiple clinical appointments and round-the-clock feeding sessions to the mix, and it’s no wonder PFD parents are stressed.

How one mom overturned an insurance appeal to for an important treatment

Emily Adams, mother of 6-year-old Morgan and a long-time insurance insider with USI, shares how she battled insurance denials and offers tips for other families.

Morgan had severe reflux as a baby and only ate from a bottle in her sleep. Despite “dream-feeding” all night, she continued to lose weight. At 1.5 she got an NG tube to get the nutrition she needed.

Eventually, Morgan’s reflux improved with the proper medication. Emily then searched for a feeding program that would repair her toddler’s relationship with food. Finding the perfect program at Nationwide Children’s in Columbus, Ohio and securing a spot there was a feat of its own. Getting insurance to pay for it proved just as challenging.

Morgan at that point didn’t have an official diagnosis because the ICD 10 code was not yet established. Clinicians had to get creative with billing codes for Morgan’s therapy sessions. It wasn’t unusual for United Healthcare to deny them. That meant Emily was used to appealing denials by figuring out what code to use and then having Morgan’s clinicians resubmit them.

This came to a head one Monday morning when Emily and Morgan prepared to temporarily move to Columbus to enroll in Nationwide Children’s outpatient feeding program. There was a two-year waitlist for the spot. It was then that the family learned their insurance wouldn’t preauthorize coverage.

Emily, who works in the insurance industry, managed to identify the insurance broker for her husband’s employer. Emily knew she recommended that the insurance agency deny their claim. She reached out and realized the broker assumed the cost would be exorbitant and the need wasn’t great. “Nobody has any idea what the expense is for each of these children because they all need different types of care at different stages,” she says.

Emily explained that the cost of not covering the program would be much higher if Morgan continued to need an NG tube and years of therapy. She convinced the broker to recommend the approval. “It was very last minute and very stressful. I’m in the industry and know how the game is played, so it was extra frustrating to see this happening to my kid,” she says.

6 tips for insurance appeals

Emily recommends the following tips for navigating insurance denials.

1. Be a fierce advocate for your family and child. When the insurance company denies coverage, insist that you’re not accepting no as an answer.

2. Speak to different people. Talk to your employer’s human resources department to find out how to reach the company broker. Explain to them about the treatment and the cost exposure. They may assume that the costs to treat your child are much more than they are. Present a budget of what your kid needs and what the expenses are.

3. Have a peer buddy who’s navigated this before.

4. Let a family member or friend go to important appointments with you. “In fight or flight mode, you’re not thinking clearly. You may not recognize the whole picture and miss a big piece of information,” says Emily.

5. Take detailed notes. “We hear things differently when we’re in stressful situations,” says Emily. A notebook to refer back to meant she could better advocate for her daughter.

6. Lean on your provider to help you advocate for coverage. Many hospitals have a patient advocate or liaison to help families navigate benefits and the appeal process.

When calling your insurance company, here’s a sample conversation Emily recommends using:

I know you don’t understand the complexities of my child’s condition. She needs speech and language pathology, occupational therapy, feeding therapy with a dietitian, pediatric psychologists and nurse practitioners to deal with this illness. Delaying care can delay my child’s progress and make it more expensive.

I need your help getting me to someone who can help all those codes appropriately process. Can you connect me to someone who has a better understanding of billing for complex conditions?

I’ll stay on the phone until you figure this out.

Navigating insurance for a child with PFD is frustrating, but it’s not impossible. Like so much of parenting, says Emily, “You have to be a fierce mama bear, talk to different people and make someone listen to you.”

Click here to download more information about your right to appeal an insurance denial and access a sample appeal letter template for PFD.

This blog post is published as part of a paid partnership between Feeding Matters and Reckitt Mead Johnson Nutrition. Learn more about our corporate partnership program and ethical standards for collaboration.

There are many opinions on using human milk or infant formula when it comes to feeding your baby. Most of the focus goes into what is being fed to your child, but less emphasis is placed on the safety of how feedings are prepared. Unless you are directly breastfeeding your child, you need to consider food safety when preparing infant bottles or tube feedings.

This focus on food safety has been front and center over the last couple of years since infant formula recalls have been in the news. These recalls occurred due to microorganism contamination concerns in a manufacturing facility. Food safety matters and is why liquid ready-to-feed or concentrated formulas undergo a heat treatment that sterilizes the product. Powder formulas are not sterilized, which poses an additional risk for contamination when incorrectly handled and prepared. The Food and Drug Administration (FDA) is the regulatory and enforcement authority over the manufacturing and distributing of infant and pediatric formulas. It is important to consider food safety when preparing both infant formula (< 12 months old) and pediatric formulas (> 12 months old) being fed via a bottle or a feeding tube.

For families preparing pediatric feedings at home, it is important to remember these safety tips:

• properly wash your hands
• clean/sanitize feeding equipment and preparation space
• store prepared feedings appropriately
• follow the recipe from your provider

Practicing good hand washing techniques helps to diminish the risk of transmitting germs. Make sure that hands are washed for a full 20 seconds with soap and water. Proper handwashing is the #1 method of preventing the spread of germs for your child.

When bottles or pump parts are being used, cleaning them regularly is essential. It is also recommended to sterilize these components in the microwave or dishwasher. Any child that has complex medical conditions has increased susceptibility to infection. Steps to clean and sterilize equipment are crucial for these children’s overall health.

Any time you mix up formula – those feedings are good to use for 24 hours. Make sure that you label and note of when feedings are mixed and store in the refrigerator until it is time for the feeding. This includes recipes of human milk fortified with formula or formula only recipes. When warming infant feedings, never microwave. Options for warming include a bottle warmer or placing bottle in a warm water bath. When leaving the house with infant feedings, transport in a cooler with ice pack to help ensure the milk/water is kept cold to decrease risk of microbial growth.

When preparing your child’s feedings, follow the recipe on the can or given by your health care provider and check the expiration data prior to preparing. Some children need special feeding recipes to meet their growth goals. Use the scoop in the formula container or measuring utensil provided by your health care provider. Use a safe water source for mixing feedings, this can be tap water or nursery water.

Feeding your child seems like the most basic parenting task, but it can be challenging and complicated for many families. Remembering some of these guidelines of food safety can help ensure that you are doing the best for your child and keeping them safe. Click here to download and print handout from the Center for Disease Control and Prevention (CDC) our HOW TO PREPARE (cdc.gov)

References:

1. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729. https://doi.org/10.1177/0884533616669362

2. Turck, D. (2012). Safety Aspects in Preparation and Handling of Infant Food. Annals of Nutrition and Metabolism, 60(3), 211–214. https://doi.org/10.1159/000338215

3. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729. https://doi.org/10.1177/0884533616669362

4. CDC. (2018, May 7). Infant Formula Preparation and Storage. Centers for Disease Control and Prevention. https://www.cdc.gov/nutrition/infantandtoddlernutrition/formula-feeding/infant-formula-preparation-and-storage.html Accessed August 8th, 2023.

Anna Busenburg, RD, CSP, LD, CLC has been a registered dietitian for the past 11 years and specializes in pediatric nutrition and specifically neonatal nutrition, working in a level IV NICU at Cincinnati Children’s Hospital Medical Center. She has covered inpatient NICU and outpatient NICU follow-up clinic patients.

She has undertaken many projects over the years to help improve patient care and cultivate a culture to support nutrition education. She has been involved in developing a process for utilizing donor breast milk in a 25-bed NICU and she was involved with leading the launch of a breast milk/formula scanning system in a 100-bed NICU. Anna is a certified specialist in pediatrics and has completed the pediatric weight management course. She obtained her Certified Lactation Counselor credential in 2019.

She authored a chapter of the book The Nutrition Communications Guide from AND published in 2020 and published an article in the Pediatric Nutrition Practice Group on RDs Involvement in Infant Feeding Preparation Rooms published in 2019. She currently serves on multiple committees for the Pediatric Nutrition Practice Group and has held various positions within AND on the state and local level. She is also a member of the American Society of Parenteral and Enteral Nutrition. When not busy with work, Anna spends her extra time and energy with her family, which includes her husband, 3 boys, and a Chihuahua.

After 8 years as an educator in the public school system, I have worked with a handful of students who have pediatric feeding disorder (PFD). The students I supported fell under broad spectrums of disability, and that does not exclude the spectrum that exists within PFD. Some children had g-tubes that required nursing accommodations and/or 1:1 aides; some had sensory sensitivities that made for a very limited selection of preferred foods; some children had to be spoon-fed with their food cut up and watched carefully for choking, gagging, etc.

It was a world that, for a long time, I generalized as “SpEd World.” It wasn’t until two years ago, when I learned about PFD through Feeding Matters, when I realized that PFD in many ways is a world of its own.

I wish I could say that PFD was something I was taught about in my college program; it was not. I wish I could say that I felt fully knowledgeable and prepared to support my students who had PFD; I was not.

On the very first day of school as a first-year teacher, I was face-to-face with a child who had PFD. There were times throughout the year, when I saw her sweet face become instantly distressed when she ran out of food in her lunchbox. It contained the only three things she ate: pureed fruit/vegetable blends (but only banana-apple-pear, sweet potato, and butternut squash… Other flavors, she would not eat and would know upon simply opening the puree pouch that it was not her safe foods), Nilla wafers, and vanilla-flavored milk.

Her parents packed what they knew to be a typical day’s worth of food for her, but on days when she was particularly hungry, she would eat through it by our scheduled 10:30 lunch, leaving nothing for 1:30 snack. She cried and screamed, and my heart just broke. I did everything I knew to do – offer her comfort, and offer her snack options from my cabinet. At the time, I did not know how specific and restrictive her diet was. Looking back, and knowing this student so well now, I realize that I caused even more distress in doing this. Her parents were amazingly accommodating, and we worked out a system to have extra supplies at school for her.

I tell this story not to discourage anyone, but to simply make the point that all teachers – even special education teachers, who have been trained in how to legally accommodate for a variety of unique needs – still need to be educated on pediatric feeding disorder. We know that roughly 1 in 37 children under the age of 5 in the United States are diagnosed with PFD; that means that there’s roughly one kindergartner in every classroom in America who has a diagnosis that we teachers know very little about and likely will not know how to accommodate.

The heart of a teacher is that of a giver, someone who wants to serve children and families and affect positive change in their community. In this way, we align beautifully to the heart and mission of Feeding Matters. We cannot, however, serve children and families without a growth mindset. We must always be seeking to learn new things, to improve our practice, and to gain a better understanding of the children we serve. PFD is one of the areas of knowledge that we teachers generally lack in, and this needs to be addressed.

I came to learn about PFD on my own terms, after gaining more and more students who fell into this category. I found Feeding Matters specifically when a student with a g-tube entered my classroom, because I felt I needed to know more in order to ensure his safety and wellbeing.

While it is amazing that Feeding Matters provides so much in-depth information, it is up to us to seek it out. I hope that we can integrate PFD into field programming at universities, not just for special education but for all educators across all specialties (because I know several students who are out in their grade-level classrooms with PFD as well!). Teachers should be prepared to serve these students, and this is the first step.

Below is a list of concepts that I feel should be included in educator academia:

1. Definition, signs and symptoms of PFD
2. Meaningful accommodations for PFD, (i.e., nursing services) and how these accommodations are written into IEPs/school documents
3. Peer-reviewed research on how PFD affects development, including how their learning may be specifically impacted

While these are somewhat basic, this information is essential for teachers to effectively educate, advocate, and accommodate their students who have pediatric feeding disorder. With this as a solid foundation, we would be making a better world for children with PFD. And isn’t that the whole point?

Parents have provided permission for their student’s story and photo to be shared here.

On a vacation to Monterey, Mexico, I sat at a fancy restaurant and friends presented me with a plate of worms. Since I am a curious eater, and it was a delicacy, I cautiously took a bite.

At that moment, I couldn’t help but think of my feeding therapy clients. After decades as a pediatric occupational therapist, I wondered, “If somebody made you eat this, held your hands down while they put it in your mouth, or made you eat three bites of those worms before you could have your regular dinner, would that be fair?”

Understanding how children feel during mealtime is the pediatric feeding with empathy that I try to share in my teachings with parents and feeding therapists. Empathizing with why children struggle to eat or drink is key to setting clients up for a lifetime of better feeding. “We need to look deeper to find a compassionate lens. The foundation for supporting all areas of feeding therapy has to be fully cemented in an understanding of empathy, connection, safety, motivation, enjoyment and brain science.”

In a presentation at the International PFD Conference, I outlined eight mindset shifts to consider for a more empathetic approach to PFD feeding therapy.

Communicate the empathy circle

Empathy is the ability to understand and share the feelings of another. It’s the ability to sense another’s emotion and imagine walking in their shoes. For children and their parents, pediatric feeding with empathy means seeing food as they see it and reflecting to them that they’ve been understood.

Communicating what might be going on for a parent or the child is called the empathy circle. We need to find empathy for the child and what they might be going through. And we need to help parents have empathy for their child and understand what might be going on for them.

Look beyond just calories during mealtime

Nourishing children needs to include more than focusing on calories. Having a child feel like a celebrated part of mealtime is essential to skill mastery. Food is nourishment, but it’s also a means of communication and socialization. It can be about giving and receiving love, celebration and family time. This is why mealtime is an important opportunity to develop strong parent-and-child relationships. We need to ensure we’re also nourishing little souls with pleasant, safe company.

Shifting adult and child roles during meals

The role of adults at mealtime is to decide the menu and provide a safe environment for learning. When children come to the table, it’s to be nourished and have energy for the day. That means some of the foods offered at that mealtime must be foods the child knows and will comfortably eat while they’re learning about other foods that the family and siblings are eating.

Many of us have approached feeding therapy as if it’s our job to “get food into kids.” However, it’s the child’s job to decide what and if they’re going to put food in their mouths, and our job is to offer a variety of foods to allow for opportunity and learning about foods so the child can discover what he LOVES.

Rethink exposure to new foods

In the past, exposure to new foods meant getting a child to put it in their mouth. In some cases, a child gets pushed past their sensory safety zone. Exposure done with pressure can decrease the enjoyment of eating, along with any benefits of that exposure.

Asking a child with PFD to try a mouthful may be way too big of an ask. A little taste, lick, touch or even seeing others enjoy a food can be considered an “exposure.” Instead of thinking of “exposure” where adults often ask (or demand) that children interact with that food in a certain way, can we think of “opportunity” where the child gets to explore the food and decide if or when ready to try it on their own.

Work with the whole family

Both parents and children bring their experiences to the table. A trusted connection with parents from infancy supports a child’s ability to self-regulate. Feeding therapists must be sure to support parents’ success. This means asking assessment questions that reflect what’s going on with a child and parent. It also means including parents in planning and solutions with questions like: Of all the things we did today or talked about today, what would you like to try this week?

Consider why a child says no

A child says no to food for a reason, such as:

• They don’t feel well
• The sensory challenge is too great
• They have a difficult motor response to that food
• They have poor regulation
• They are too worried

Consider food refusal as communication. It invites us to be curious about what’s going on and how we can make that child feel more ready and safe for this mealtime interaction.

Shift from food tolerance to enjoyment

Tolerance is the capacity to endure pain or hardship. But enjoyment means satisfaction, pleasure and gratification. Food constitutes not only the taste but also sensory aspects, socialization, experience and satiation. Many of us have used the word “tolerance” in our feeding goals. But if a child doesn’t like that food, why would we settle for “tolerance” when we could aim for “enjoyment?”

Pay attention to communication cues

Forcing a child to eat when the adult is the more powerful figure in the relationship could mean missing cues of a child’s sense of safety, worries and need to protect themselves. It’s easy to push into their stress and worry zone and then call food refusal a behavior problem. This can unintentionally teach a child to ignore their body and sensory cues.

When we allow children to tune in to the wisdom of their own bodies, we’re supporting safety. Children who experience safety with us as parents and therapists are better able to regulate themselves. Pediatric feeding with empathy means seeing them, hearing them, valuing them and understanding them, to climb into their skin and walk around in it.

Ultimately, eating is a learned behavior. How parents and children interact over mealtimes matters. This is why parents and feeding therapists must do what they can to create positive memories around eating, food and mealtimes.

View Marsha’s International Pediatric Feeding Disorder Conference Session: Shifting our Focus in Pediatric Feeding Towards a Compassionate Lens here

When you spend hours every day feeding your child and running to therapy and medical appointments, starting school can seem daunting. Whether it’s at age 3 or later, there comes a time when your child is ready to head to school.

We asked three women experienced with different school stages for children through young adults with pediatric feeding disorder (PFD) to offer advice. Following are their stories and advice.

Transitioning to preschool with PFD

At the age of 2.5, when most toddlers’ parents are thinking about starting preschool, Liz Wiseman Smith was busy with too many hospital stays to count. Still, helping her daughter, Zoe, reach age-appropriate milestones as best she could was a priority.

Zoe was born prematurely with heterotaxy syndrome, which occurs when the heart and other organs are in the wrong place in the chest and abdomen. Before the age of two, she had five cardiac surgeries. Reflux from gastroesophageal reflux disease (GERD) meant that she needed a gastrojejunostomy tube (GJ-tube) that allowed her to eat through her intestine.

Health complications meant Zoe had just begun walking six months before school and communicated through sign language. Despite all she’d been through, the family was determined to help Zoe thrive.

“Our goal was trying to get her caught up as quickly as we could, but there was a lot to focus on,” says Liz.

Set up a communication plan

In Massachusetts, Liz was accustomed to a robust early intervention program where clinicians came to her home and left details from every session. Starting preschool meant figuring out how to transition from this open communication model to public school special education, which wasn’t likely to meet that same level.

Liz took it upon herself to initiate communication and found her daughter’s school was responsive. Zoe’s preschool teacher even developed a communication plan using a notebook, which the nurse updated.

Be sure your child’s school has the nursing staff you need – and a plan for substitutes

For kids with complex feeding issues, especially with feeding tubes, the school nurse is an integral component to successfully transitioning to a new school. This means connecting with the nurse before school and also ensuring the school has a plan for any days when the nurse might be absent. For Zoe, this meant she started school three weeks late because her school initially couldn’t find a nurse.

Transitioning to elementary school with PFD

Yomi Ogedegbe’s son, Joshua, is seven and beginning third grade. Although he is on the autism spectrum, he wasn’t diagnosed until age 4. He struggled with feeding since beginning solids, eating mostly a pureed diet, but only recently was diagnosed with oral dysphagia.

Having specific diagnoses has been key to accessing therapy services in and outside of school with insurance coverage.

Navigating her son’s autism and pediatric feeding disorder has meant that Yomi has learned valuable lessons about making the most of education and services in school.

Make your child’s IEP as detailed as possible

Yomi considers parents a key partner in developing her child’s Individualized Education Plan (IEP). Rather than leaving it to Joshua’s team of therapists, she did a lot of research to figure out what to include in the documentation. “If there are things that you think will be helpful, research to get the information so that when you ask for something, it’s backed by evidence,” says Yomi.

Be your child’s advocate

Just because something is written in your child’s IEP, doesn’t mean it’s necessarily followed all the time. Yomi says she regularly looks at Joshua’s IEP and calls to check with his case manager. “When they know you’re regularly keeping track of everything that’s supposed to be done, there’s more incentive to do what they’re supposed to,” says Yomi.

Ensure continuity of care

When your child receives therapy services, connecting the school team with outside therapists is important. For example, Joshua spent a month in an intensive feeding therapy program. Yomi connected her son’s school speech therapist to the feeding program team so that she could get trained on how to continue supporting Joshua’s feeding goals.

Transitioning to teen years and beyond with PFD

When Dana Kizer, MS, OTR/L was in school with her brother, Sean, who is medically complex, there were times when she would have to step in to support him. Once when Sean was more sensitive to touch and getting wet or messy, Dana saw him accidentally spill his lunch tray and had to run over to keep him from taking off his clothes in the school cafeteria.

Today, Dana is an occupational therapist, and her brother works part-time at Barnes & Noble. Thanks to feeding therapy support, Sean can enjoy a variety of foods and textures with safe oral motor skills. Still, he does sometimes need cues for pace and bite size.

As an OT and a sibling who continues to help out, Dana offers some tips for transitioning to high school and beyond.

Not every time can be therapy time

In times of stress, transitions and routine changes, it might be important to lean on comfort foods. For example, when Dana’s family went on a cruise, Sean would only eat chicken tenders by the pool. Out of his normal routine, it took a few days to adjust and for his anxiety to decrease. After a few days, Sean could eat a variety of foods without it being forced or stressful. “What we learned as a family is that we’re not always in therapy mode,” says Dana.

Focus on episodes of care

Transitioning to high school, college or a new job might mean your child with PFD needs what Dana calls short bursts of therapy focusing on a few goals. As an occupational therapist, many clients will see her in the summer to prepare for increased independence before a transition. This is especially important for teens and young adults who need new, age-appropriate regulating methods. “They might plateau in feeding therapy or take a break, but they return when their maturity level increases and they’re ready to be more independent.”

Having a child with PFD at any age means constantly adapting and learning. Getting support from those who have been through the journey before makes these transitions a lot easier.

This blog was adapted from a panel at the International Pediatric Feeding Conference. All three parents are members of the Feeding Matters parent advisory board.

Hello! I’m Michelle, and I am thrilled to share where my inspiration for becoming a feeding therapist came from and introduce my newest research project. I have a full-circle story of how I ended up working in the field of pediatric feeding. I am so passionate about working with these clients and their families.

When I was a junior in high school, a friend asked if I could help her babysit for a family in my neighborhood. I became this child’s habilitation and respite provider and began attending their therapy sessions. I loved all of them, but was particularly intrigued by his feeding therapy sessions. I started helping with his home program, introducing new foods, playing with new foods, and working on feeding skills at home. I knew that was the space that I wanted to be in when I grew up, and I worked hard to graduate with my doctorate in occupational therapy in 2020.

During my capstone in my OT program, I began a small research study, studying the interventions I was observing in feeding therapy. Unfortunately, in the middle of this experience, the COVID-19 pandemic hit, and I was unable to get my study off the ground.

I have always been a question-asker and answer-seeker, looking to research and clinicians with more experience for advice and support for how to best help my clients and their families. Since graduate school, I have been interested in returning to my research question and helping feeding therapists provide the most evidence-based interventions to support our clients and their families.

As a therapist, I get my evidence and best-practice by learning from families, colleagues, and reading the most current research. However, with pediatric feeding disorder as a new diagnosis and feeding therapy as an emerging practice area, research on feeding therapy interventions is scarce. This is the gap I’m trying to address as I begin my journey into conducting research.

1. Formulate a question. What are common questions that you find yourself asking or that you are asked by families, other practitioners, or from people that you are mentoring? For me, I was often asking why are these the interventions that I keep coming back to. I ask myself daily how the strategies that I choose to use are helping my clients find success at mealtimes. I have asked the same questions of all of my mentors and frequently find caregivers or other health care providers asking the purpose of certain strategies that I bring to the table.
2. What population/setting do you need? Could you answer your question using the data from your documentation? Do you need to study your clients or their caregivers or other clinicians? Where would you find data to support your research? Would you need to be in an outpatient clinic, a hospital or acute care setting, home health, school, etc.?
3. Current project you can help with or start something new: Are there current research projects that are addressing your question or a question you’re interested in, or do you need to start your own? Start with a literature review to look for what’s been researched and where the gaps are. Contact organizations or communities that may be doing research (ie. Feeding Matters, Universities, etc.). Use social media to find others who are like-minded and connect with them. Don’t be afraid to send a DM or email to a researcher or clinician who you relate to who may be interested in helping with your idea.
4. Resources: If you’ll be conducting research with human subjects, you will need an IRB. The best way to get an IRB is to connect with a university. Doctorate programs in the therapy fields are becoming more common and often have benefits for community research partners including access to student research teams, access to university libraries and libraries who can help with research design, and professors who may have similar interests or projects that you can model yours off of.
5. Develop a plan. Through your literature search, determine which type of research fits your question and resources best. Will you be conducting qualitative or quantitative data? Do you have the resources and ability to pursue a randomized control trial, or would a pilot study or case study fit better? Take time to find the right research type for you. Use templates for research protocols, plans, and write-ups from the beginning that match your study type, especially if this is the first study you’re leading. During your literature review, look for strategies in their research protocols that you can model your procedures off of and save these ideas together to reference as you work on yours.

I didn’t fly to Orange County for the magic of Disney. I flew there in hopes of a magic feeding therapy wand. The truth is, when your child has pediatric feeding disorder (PFD), there’s no such thing as a magic wand. Since 10 months old, we’ve tried various feeding therapists, different approaches, different foods, what feels like everything to get Levi to eat. I’m thankful that he doesn’t have a tube and he takes his calories orally, but I still wish for magic. He will drink only vanilla flavored formula, from a specific cup. He will lick a lollipop, play with food, and take some sips of danimals yogurt smoothies. All of that took over 3 years of slow progress in feeding therapy.

They don’t tell moms about this. There is no instruction manual given out when you have a baby that says, “Hey, your kid might not eat food.” And yes, I am lucky, I know I am lucky. I could be visiting children’s hospitals for much darker challenges; for that I’m immensely grateful. Yet still, I wish for magic. We are coming up on his 4th birthday and I’ve never seen my son eat a birthday cake. I would give him ice cream and cake for every meal, if only he would just eat something… anything.

The trip to Orange County didn’t result in a magic wand. He’s not yet ready for a more intensive therapy program and so we will wait and we will move forward and we will hope. Wait to see if he’s ready in the future, move forward with the current therapists and efforts that have gotten us to the point we are today, hope that one day he will lick the frosting off his birthday cake and maybe even take a bite.

I clearly remember the day a doctor’s news changed my life. After months of chasing my baby around with a bottle to eat an ounce at a time, I learned Alex has a rare chromosome disorder.

The neurologist enthusiastically delivered the devastating news, charmed that he was the first to solve the puzzle of why Alex’s development was delayed. Even as a registered nurse, I found his explanation confusing. My shock meant I couldn’t have processed the information even if it had been simple.

How NOT to support families with pediatric feeding disorder

As a healthcare professional, that day was one of many where I learned how not to support a family of children with pediatric feeding disorder (PFD). The news should have come from a genetic counselor, my husband should have been there, and it should have been shared with compassion.

The journey before learning about Alex’s disorder was a struggle as well. Although he was my first, I knew it wasn’t normal for a newborn to eat only an ounce at a time. What he took in, he spat up. His growth was slow, and at 9 months, he was neither sitting up nor crawling.

Our pediatrician told us to give it time, that I was a nervous new mom and that Alex was slow to grow because it was a difficult pregnancy, and he would catch-up. It wasn’t until we saw a different provider at 9 months that we were connected to a neurologist, geneticist and Early Intervention (EI) services. This too, was a lesson in how not to support families of children with PFD.

Armed with a diagnosis and therapy services, we hoped to help Alex eat more and get the calories he needed to grow and develop. Instead, we were told to try harder to feed him and to schedule weekly weigh-ins. A feeding tube was held over our heads like a threat, as if inserting one would signal our failure as parents.

By the time Alex was 18 months and weighing only 16 pounds, I nearly begged for a G-tube. When he finally got one and started gaining weight, I couldn’t help but wonder why we were encouraged to try so hard. Why didn’t he have the nutrition he needed during such a critical developmental time?

Alex’s genetic diagnosis and the PFD that came with it became a springboard for my career. I had a choice to struggle with the question, “Why me?” or do something that would make this odyssey less painful for others.

I chose the latter.

Leading research to support families of children with PFD

After completing a master’s degree in nursing education and then a doctorate in nursing, today I research PFD and how it affects the entire family unit. I’m dedicated to fixing what we went through for others.

At the beginning of Alex’s diagnosis 15 years ago, there wasn’t common terminology among physicians and clinicians. This was a focus for my dissertation because it is a big barrier to building research and supporting families of children with PFD.

It’s why I have a big affinity for Feeding Matters, who did the work to get a PFD ICD-10 diagnosis.

One of the things I’ve done with our Feeding Flock Team is to develop several parent questionnaires about feeding behavior, skill, family management of feeding, and parent and family impact of feeding. For example, on a project with researchers and clinicians at Children’s Hospital of Atlanta, we are developing an assessment of the impact of intense food allergy regiments on caregivers and households.

Our goal is to provide data to clinicians and parents to help determine whether a food allergy intervention eases the psychosocial impact that food allergy has on everyday life for parents and families. For example, new oral immunotherapy treatments for food allergies require children to take a certain amount of allergenic food and have activity restrictions every day at a specific time. Is the cost-benefit worth it? Ultimately, the child still needs to avoid the food, but should have less severe reactions if exposed to small amounts unintentionally. Are there quality of life improvements for the family? We only know if we measure this.

I’ve interviewed parents as I go through the process of developing measurement tools for PFD, and I’ve heard their stories. Witnessing what others go through and being in the position to do something about it is what gives our family’s struggle meaning.

Because of our experience with feeding therapies, I learned to ask more questions. And I learned that research for PFD must be patient-centered. Only with patients who have experienced PFD and their families at the helm can research lead to better journeys and improved outcomes for the whole family.

It’s an experience many women have: first, miscarriages. Then, joyfully, delicately, pregnant again. Then, complications throughout the pregnancy. The emotions are overwhelming every moment of every day for months. Then, you hear your baby cry– the best sound in the world because it means he’s alive, healthy, perfect. However, in our case, things weren’t perfect. Everything wasn’t ok.

Within the first few months of his life, my son was diagnosed with failure to thrive. No doctor could explain what was causing him not to thrive. I felt like our doctor was putting so much pressure on my son to gain weight that it was causing my son to throw up. It was just too much for him, and for me. My son seemed to be thriving, joyful in all things, except for eating. was thriving in everything but not with eating.  He hated everything involving eating and weighing.

I felt like I was failing as a parent and no doctor was noticing or validating just how hard I worked to feed my son. I cried a lot. I felt alone, and I started getting really depressed. I had no one telling me I was a good mom, I had no one I could relate to, and I felt so alone and isolated. I left my job to focus on taking care of my son, making me even more isolated, and forcing my husband to work six days a week to make up for the income we were losing. I felt like I was horrible parent, a failure. I continued pushing doctors for a diagnosis but I did not get one until my son was 2.5 years old. My son was diagnosed with having delayed gastric emptying. 912 days of his life was spent in discomfort, fear, and anxiety. This should not have been…

After the diagnosis, I knew I needed help, and I knew that someone had to be going through something similar. I went searching online for a support group and came across Feeding Matters. Within a few minutes I had requested a family coach / mentor. I was quickly matched with Amber and from the moment we connected it was a game changer for me mentally and physically. Amber reminded me I wasn’t alone, I had someone validating my feelings, and Amber let me know I was a good mom.

Not many people talk about pediatric feeding disorders, and it’s rare to find another child going through this in your normal day to day life. Amber reminded me that I have a story to tell and because of that, I became a family coach to support other families who are going through this as well. Unless you are going through it, you really don’t realize the impact and support feeding matters offers. This has been a lifesaver for me to have a family coach / mentor.

When my son, Ishan, was initially hospitalized for aspiration pneumonia, failure to thrive, and feeding intolerance, an NG tube was placed. I felt so defeated. I felt terrified. I felt anger. I felt overwhelmed.

I watched my infant son struggle in the hospital to breathe, to eat. I thought perhaps since we were being seen at the children’s hospital, I would get the social support I needed– to feel seen, to get connected to resources like a new childcare option now that the NG tube made it impossible for Ishan to return to full time daycare, and to navigate this new world, but like too many families, that wasn’t my experience.

I was so isolated. Family and friends who expressed their desire to help, didn’t know how. I didn’t have the capacity to tell them how. I was consumed with keeping my son eating, keeping him breathing. Well-meaning family and friends didn’t understand my son’s health issues. It felt like they didn’t care. When the NG tube was placed, people thought he was ‘better’ and any offers of support seemed to stop altogether.

Desperate, I started looking online for support groups and I found Feeding Matters. I requested to be a part of mentorship pairing through their Power of Two program. I was paired with a parent mentor who had ‘walked in my shoes’ with their own child’s with feeding issues. The first time Leilani called, I was a wreck, but her positive and understanding energy was everything to me. She reminded me to recognize the tiny moments I was grateful for. She told me to celebrate every little positive step, to laugh at every laughable moment. I was so burned out but her encouragement and experience helped me to change in small ways and become the mom and healer my son needed me to be.

We left the hospital with the NG tube and began feeding therapy once we got home. Months later, I am happy to share that we are getting ready to wean Ishan from the NG tube. I regularly call and text Leilani with updates, questions, and ask about how her son is doing. It’s heartening to see a parent further in their journey with pediatric feeding disorder, to see that life moves forward and progress can be made.

Ishan is my whole world. He is a fighter. He is a joy. Despite having approximately 20 different diagnoses related to feeding, he is eating orally and enjoying exploring food. I am thankful for every day, every meal, every moment with my boy.