Tag: pediatric feeding disorder

For a function that’s so natural, breastfeeding is surprisingly difficult for many new mothers and infants. Feeding challenges, like reflux, oral aversion or even dysphagia, can make breastfeeding feel insurmountable.

And while there’s nothing wrong with relying solely on formula to feed your baby (despite the shame some natural parenting evangelists espouse online), many moms are determined to make some amount of breastfeeding work.

Nicole Lattanzio, RD, IBCLC can attest that breastfeeding is often possible, even in some of the most challenging cases. Working in the NICU and with virtual clients, she has supported countless moms and babies with breastfeeding and nutrition. Some simply need latching and positioning advice, but other more complex medical cases need significant support.

There are three requirements for successful breastfeeding:

• Feeding your baby

• Protecting the milk supply

• Having a positive experience at the breast

For infants with feeding challenges, aligning these three goals can take time and creativity.

The most challenging and most rewarding case Lattanzio recalls was a preemie with a G-tube, feeding difficulties and significant oral aversion. Her mom was committed to making breastfeeding work. Once the infant was released from the NICU, Lattanzio helped with lactation support while a speech therapist worked on oral skills and strength. Lattanzio is also a dietitian and monitored the infant’s growth and feeding tolerance. At first, the baby didn’t have the interest or skills to transition to breastfeeding. Instead, they focused on getting the baby comfortable resting skin-to-skin.

They did G-tube feedings while the baby nestled skin-to-skin. Gradually, they transitioned closer to a breastfeeding position, including giving her a pacifier as the G-tube was going. Next they worked on latching with a nipple shield and used some syringes into the nipple shield. At eight months, the infant had her first full meal at the breast. “It shows that babies at almost any age can learn to breastfeed. It was so cool to see that she got through that whole process, and the mom had her full milk supply,” says Lattanzio.

Whether you want to maintain your milk supply for bottle feeding or want to breastfeed, Lattanzio offers lactation advice for moms of infants with feeding challenges.

Understanding breastfeeding challenges

Swallowing is a complicated process that when broken down into parts can seem miraculous. Expert researcher Georgia Malandraki, PhD, CCC-SLP, explains the anatomy of a swallow in a way that makes anyone appreciate why the skill can be difficult to master.

On its own, difficulty breastfeeding does not mean a child will develop pediatric feeding disorder (PFD). However, many children who do have PFD also struggle to breastfeed.

Breastfeeding challenges can vary from simple to complex, but some of the most common issues include the following:

• Reflux

• Aspiration

• Oral motor dysfunction or coordination issues

• Respiratory problems that make it difficult to coordinate sucking and breathing

• Premature birth that causes a lack of skills

• Oral aversion

• Incorrect latch or positioning

• Tongue-tie or lip-tie

How can I identify if my baby is experiencing these issues?

Signs of breastfeeding challenges may include frequent spitting up, arching of the back, irritability during or after feeds, coughing, choking, crying, pulling away or difficulty latching. Early detection and consultation with your pediatrician or a lactation consultant are key to addressing these challenges effectively.

Tips for successful breastfeeding even with feeding challenges

Not all babies with feeding challenges and medical complications will breastfeed, and that’s okay. Babies and even postpartum mothers benefit from any amount of skin-to-skin and pumped milk. Infants fed entirely by formula still get the nutrition they need to grow. Key to successful breastfeeding is a relaxed mom, so be kind to yourself as you navigate whatever works for you and your infant.

Following are Lattanzio’s recommendations to support breastfeeding for an infant with feeding challenges.

Try different feeding positions

An obvious place to start for breastfeeding troubleshooting is to experiment with different positions. Positioning can make a big difference for a baby who may experience some reflux, colic, or aspiration (be sure to monitor this with a clinician because this can be dangerous).

Different breastfeeding positions can help your baby latch more effectively and reduce discomfort. Some infants with reflux or aspiration challenges benefit from being held upright, where gravity can help keep milk down.

Experimenting with positions can help you find the one that works best for your baby and you, promoting better milk flow and reducing feeding difficulties.

Be patient and open to feedback

Feeding challenges can be frustrating for both you and your baby. It’s essential to be patient and give yourself time to adapt and learn what works best. Be open to feedback from lactation consultants or healthcare providers who can offer valuable insights and techniques tailored to your baby’s needs. Remember, every baby is different, and what works for one may not work for another. Patience and willingness to adjust can make the breastfeeding journey more manageable.

For Lattanzio’s mom and baby, who finally successfully breastfed at eight months, she says, “This baby was very sensitive to positioning, so it was a lot of trial and error. Mom was very patient and open to adjustments and feedback, which set them up for success.”

Leverage breastfeeding tools as appropriate

For many babies, using breastfeeding tools, like a nipple shield, can help with latch difficulties. Especially for infants with feeding challenges and medical complications, a nipple shield can provide a larger target for the baby to latch onto and help regulate milk flow, making feeding more comfortable.

With the support of a lactation consultant, Lattanzio has helped mother use a syringe with the nipple shield. Consult a lactation specialist to determine whether these tools suit your situation.

Don’t force your infant to breastfeed

Breastfeeding, especially when there are feeding challenges or medical complications, can take a lot of trial and error. This might mean you have a few successful sessions and your baby shows disinterest.

Insisting on breastfeeding when your baby shows some signs of stress or overwhelm can cause breast aversion. “Skin to skin is usually a nice relaxing place for babies and later try to ease back to breast,” says Lattanzio.

If that doesn’t work, get some support to reassess what’s going on instead of forcing breastfeeding.

Pump with a hospital-grade pump to maintain your milk supply

If your infant isn’t breastfeeding full-time, you’ll need to pump if you want to maintain your milk supply. This is true even if your baby has many partial feedings. “I’ve seen preterm babies who are breastfeeding okay, but they’re sleepy. That can impact the milk supply,” says Lattanzio.

Many more convenient types of pumps, like the wearable ones, aren’t strong enough to maintain your milk supply. You’ll want to get a hospital-grade one if you’re using a pump often or exclusively. These pumps are designed to mimic a baby’s natural nursing pattern and are more efficient than standard pumps.

Initially, maintaining your milk supply means pumping eight times in 24 hours. “You can sleep for a stretch of time, but every time the baby is being fed by a bottle, you still have to pump in order to keep up your milk supply to be where it needs to be,” says Lattanzio.

Build a network of support

If nourishing an infant with feeding challenges feels challenging, that’s because it is. Your pediatrician, a lactation consultant, a dietitian and a speech therapist can all provide valuable insight to help you and your baby get what you need.

With eight feeds a day, plus pumping, feeding an infant with medical complications is literally a full-time job. Family and friends can offer practical assistance, such as preparing meals, helping with household chores and providing emotional support.

Finally, keep in mind that it’s okay if breastfeeding doesn’t work out as planned. Prioritizing your well-being as a mom means finding a feeding method that works for both you and your baby.

Sometimes successful breastfeeding means reassessing goals, says Lattanzio. “If the goal initially was exclusive breastfeeding, maybe we come to the point where it’s about finding a good middle ground where they’re comfortable, happy and it’s sustainable.”

Nicole Lattanzio, RD, IBCLC is a registered dietitian, board-certified lactation consultant, and mom of four. She works in a level III NICU in Phoenix, Arizona and runs the popular Instagram page @infant.nutritionist, where she shares about starting solids, navigating feeding challenges, tackling toddlerhood and more.

For a pediatric disorder that affects 1 in 37 children under age 5 –– making it more common than autism –– pediatric feeding disorder (PFD) remains significantly misunderstood and undiagnosed. This is unsurprising in some ways, as the Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework my colleagues and I authored was only released in 2019. PFD only became an International Classification of Diseases (ICD) code in October 2021.

The consensus paper and code aligned pediatric clinicians, allowing for more consistent assessment and diagnosis. Despite these advancements, gaps remain, particularly in primary care and among caregivers, who often lack an understanding of feeding progression and the potential risks for any child to develop feeding difficulties.

Helping more children earlier, whether they have PFD or signs of feeding challenges –– requires a multi-pronged approach to raise awareness, including:

• More translational research that directly helps children and families

• Raising awareness of PFD among primary care providers and pediatric allied health professionals

• Clearly defined feeding milestones for transitioning to solids

• Educating caregivers about feeding

Ensuring clinical research directly supports families

Age 6-12 months, when children transition from milk to solids, is a critical time for feeding development. Unfortunately, it’s also the least researched stage of child development. Infants change quickly in multiple, parallel ways, making research that controls for variables complicated.

One important way to support early diagnosis is to improve feeding guidelines for all children, an area of focus in my Neurodevelopmental Feeding and Swallowing Lab.

Current guidelines from the American Academy of Pediatrics recommend that children begin transitioning from exclusive breast milk or formula to solid foods at 6 months and eat a variety of table foods by the time they turn one. That’s a lot of change in a short window with little direction.

We need more research to answer questions like:

• What are the primary influencers for feeding development?

• What are readiness skills for eating solids?

• When should different foods and textures be safely and positively introduced?

• What are the risk factors for children who struggle?

We have robust nutrition literature on the exact macro and micronutrients and calories children need throughout their first two years of life. However, we are behind on research that focuses on feeding skills and abilities.

To that end, I’m proud to see a new generation of scientists researching all areas of feeding.

Identifying red flags of feeding difficulties early

While research is a long game, children affected by PFD have a short window to best address developmental challenges.

Learning to chew and swallow is among children’s most complex early skills. This makes transitioning from milk to solids in the first two years, particularly from ages 6 to 12 months, the most vulnerable time for children to falter.

Because many children aren’t adequately identified for feeding difficulties until they are older, they miss the optimal window for intervention. In some cases, children most at risk for being overlooked are those considered low-risk, healthy, neurotypical children. Because they aren’t monitored for developmental challenges as closely as a premature baby, for example, early signs of feeding challenges go unnoticed. These children could potentially avoid developing PFD if identified earlier.

For example, a child who starts solids and then gets sick with a virus may have a setback in feeding development. A few times of food refusal while not feeling well can then become a habit. The caregiver often has little knowledge about how to move through solid food textures. The child misses feeding experiences, making it more difficult to introduce new foods and textures later. Early challenges or setbacks like this may not turn into a significant case of PFD, but in some cases, they do.

Following are some red flags parents may notice:

1. Persistent coughing or gagging: Some coughing or gagging is common but frequent occurrences during meals may be signs of a problem.

2. Stressful feeding experiences: Feeding should not be super challenging or miserable. If you dread mealtime, this is an indication of an issue.

3. Sleepy during feedings: Especially in infants, sleepiness can signal feeding difficulties.

4. Transition struggles: Difficulty moving from liquids to solids or new textures.

5. Slow progress: Inability to increase food volume as the child grows.

How clinicians can raise caregivers’ awareness of feeding challenges

As with any disorder, early diagnosis leads to more positive outcomes. For those who present some early signs of PFD, identifying and addressing red flags early can even prevent a child from developing pediatric feeding disorder.

Solid foods are not one thing. A range of foods requires different skills. One way to identify more children earlier is for primary care providers to ask caregivers more direct questions about feeding instead of simply asking if a child is eating solids.

More specific questions about feeding could include the following:

• What types of textures is the child eating?

• What foods does the child eat?

• How much can the child eat?

• Is the amount the child eats steadily increasing?

• How long do meal times last?

• How much refusal occurs?

• Is feeding a struggle?

The Feeding Matters screening questionnaire includes some of these questions to identify children who may have PFD. Asking detailed questions about early feeding habits could prevent some children from developing PFD in the first place.

Raising clinical awareness of PFD

While the past few years have brought significantly more awareness of PFD, it’s still not unusual to encounter pediatric clinicians unaware of the diagnosis.

Widespread advocacy and education are needed within and beyond the healthcare community. Pediatricians, speech-language pathologists, nurses and even early childhood professionals must have the knowledge and tools to recognize and address feeding difficulties early.

What clinicians can do to better support feeding

1. Ask detailed questions: Inquire about specific food types and textures offered.

2. Provide guidance: Offer nuanced advice on feeding progression and when to introduce new textures.

3. Educate caregivers: Share knowledge about developmental milestones and readiness for new foods.

4. Monitor closely: Pay attention to children with feeding struggles instead of encouraging a “wait and see” approach.

5. Encourage early intervention: Identify and address feeding difficulties as early as possible to prevent escalation.

Finally, clinicians must emphasize how important it is for caregivers to trust their guts. When feeding seems like it isn’t going well, it probably isn’t. That warrants discussion and perhaps intervention to adjust the child’s feeding practice.

The more we as researchers and clinicians do to understand feeding and support children and families during the transition from liquids to solids, the more children will have the opportunity for healthy, positive feeding experiences. This could reduce the prevalence of PFD and promote better outcomes for children and families.

Amy Delaney, PhD, CCC-SLP is an assistant professor at Marquette University and director of the Neurodevelopmental Feeding and Swallowing Lab. She is the education pillar chair for Feeding Matters’ PFD Alliance Executive Council. She co-authored the consensus paper creating pediatric feeding disorder (PFD) as a stand-alone diagnosis and the Infant and Child Feeding Questionnaire, an online survey developed by Feeding Matters, to identify red flags for PFD.

What to expect before and after your child’s G-tube insertion

So, you’ve finally decided to get a G-tube for your child. Arriving at this point in your child’s feeding journey can be a relief. Others may feel some regret.

Either way, says Karen Ellis, mother of a 2.5-year-old who recently got a G-tube, getting one can make life a lot easier for children with pediatric feeding disorder (PFD) and their parents. After a minor procedure, a short recovery and months of stress-free feedings, Ellis and her family are confident they made the right decision for their son.

G-tube insertion, or gastrostomy tube insertion, is a medical procedure where a tube is placed through the abdominal wall and into the stomach. This allows caregivers to deliver nutrition and medications directly into a child’s stomach. Some kids with a G-tube use it to supplement oral feeding. Others exclusively eat and drink through the device.

Learn more about the benefits for kids with PFD of G-tubes in this blog: Does your child need a G-tube? Here’s what you need to know.

Ellis’s son, Ishan, gets most of his nutrition through the G-tube. He eats and drinks orally as well. Ellis offers insight into what parents can expect from the procedure and the few months after it.

What to expect before the procedure

Ishan had an NG tube for a longer period than typical, says Ellis. Running after an active toddler to replace the tube whenever it fell out was a constant struggle. Since birth, Ishan has struggled with eating due to gastrointestinal issues and silently aspirating. He was often sick, didn’t eat age-appropriate amounts and was slow to gain weight. His parents pushed Ishan’s providers to consider a G-tube, but they were told their son might grow out of his feeding issues.

At this stage of the PFD journey, Ellis says following your instinct as a parent is essential to advocating for your child’s needs. “They wanted to blow everything off as normal parenting or a simple therapy issue, but knowing as a parent that there continues to be something wrong means you have to keep pushing,” she says.

What gave Ellis clarity, she says, was knowing they were trying hard enough. “He was doing his best, we were doing our best, but still, something was not quite right.”

What to expect during the G-tube procedure and recovery

For Ellis, the hardest part of the G-tube procedure was knowing it was elective surgery that required hospitalization. By the time Ishan was scheduled for surgery, Ellis knew it was necessary, but she still felt they had made a choice. Ishan’s procedure and recovery both went smoothly.

Like most kids, Ishan spent one night in the hospital. Ellis says he did experience some pain that first and second day. Ishan received pain medication and lots of TLC. They held him the whole time at the hospital and watched his favorite programs.

By day three and four, Ishan was back to running around and doing his typical gymnastics flips. He returned to his normal toddler antics in less than a week. “Kids are resilient, but we tried to hold him back from too much activity right after surgery,” she says.

For two weeks, Ishan had to skip his baths and only have sponge baths. In general, swimming in the pool or ocean tends to be okay, but lakes and rivers can be problematic.

Watch the skin around the G-tube because that can start to look angry and red initially. You can learn more about feeding tube care using What You Need to Know Now: A Parent’s Introduction to Tube Feeding. This resource, also provided in Spanish, was provided by the Feeding Tube Awareness Foundation with permissions to share.

What to expect in the months after a G-tube procedure

Adjusting to G-tube feedings takes some trial and error for parents and kids. Even months later, G-tube feeding requires adjustments when a child is less hungry due to an illness or more hungry due to a growth spurt. In the beginning, says Ellis, it’s important to go low and go slow with feeds.

At first, Ishan hesitated to let anyone touch his stomach, so his parents made buttons for his favorite stuffed animals. They fashioned these themselves, but you can also buy them. Ellis showed Ishan how opening and closing the button doesn’t hurt. They spent a lot of time talking about the button and getting used to it before diving into feeding.

Ellis also spent some time getting used to feeding her son through the tube. Overfeeding can cause vomiting or an upset stomach. She keeps a towel in the car in case of any incidents. “It’s hard to guess how much a toddler wants to eat. It’s never a perfect science,” she says.

Ellis offers three tips for G-tube feeding

1. Find the formula your child tolerates best. Like baby formula, G-tube formulas come with different ingredients. The Ellis family found that the vegan formula has been better for Ishan than the milk formula.
2. Stay consistent with oral feeding when applicable. Ishan eats orally two times a day. They do this before tube feeding so that his stomach isn’t full.
3. Use a backpack. Cute feeding backpacks allow busy toddlers to run around independently during feeding sessions. Ellis tapes the tubing to the back of Ishan’s shirt or pants so it doesn’t come out while he’s running around.

These days, Ishan is happily playing and growing, and his parents are confident they made the right decision to get a G-tube. Ellis says it’s helpful to consider the G-tube feeding experience with PFD more like a marathon than a sprint. This can be harder for parents than kids, who tend to be more resilient. “As long as the kid is pretty happy and healthy, we’re the ones who are more stressed,” she says.

For more support in your G-tube or pediatric feeding disorder journey, check out our peer-to-peer mentoring program.

When your child needs feeding therapy for pediatric feeding disorder (PFD), navigating the system to access treatment can be challenging. If your pediatrician recommends feeding therapy, the following are some tips for how to find the right match.

Understand the role of feeding therapists

Feeding therapy requires additional training that neither pediatric speech and language pathologists (SLP) nor occupational therapists (OT) typically learn in graduate school. Look for a clinician who has obtained this additional training and has been mentored by another experienced feeding therapist.

Both SLPs and OTs can be qualified to provide feeding therapy. There are times when one discipline is better equipped to support your child than the other.

SLPs have extensive knowledge of swallowing, chewing and the oral motor part of feeding therapy. If your main concern for your child is choking or chewing, speech therapists are best equipped to help.

An OT is an expert in sensory issues and texture aversions. If the feeling of food in your child’s mouth, combining foods or picky eating are the issues, look for support from an OT.

Even in the initial feeding therapy evaluation, you might want to request one specialty over the other. If you’re unsure, let the intake team know your feeding concerns. They should be able to match you with the right therapist.

Check your insurance benefits

In many cases when a child needs feeding therapy, the referring physician will not indicate whether the therapist should be an SLP or an OT. In some cases, though, your insurance will specify coverage for one or the other. It’s a good idea to understand your benefits before requesting a therapy intake evaluation.

Set expectations from the start

To get the most out of feeding therapy, share your goals from the start. Even during the initial evaluation, it’s important that you and your child’s therapist have aligned goals. For example, if your child responds to a specific approach or personality, be sure to share that. In many cases, therapists can adjust to match your child’s needs. Part of the therapeutic use of self is learning to gauge and meet children where they are.

Feeding therapists have to be flexible. This means goals should be fluid from the start. If your child isn’t reaching their therapy goals, it’s time to adjust them. If your child has a setback, like a hospitalization, you may need to change your goals entirely.

Find out how to be a partner at home

As feeding therapists, we only have one hour a week to work with a child. That’s why we typically ask parents to join us during sessions so you can continue the therapy at home. As much as parents need breaks built into the schedule, therapy is not the ideal time.

Expect collaboration

From the start, feeding therapy is collaborative. During the initial evaluation, you’ll set goals and therapy expectations together with the therapist. You should also expect your therapist to work closely with any other clinicians who support your child.

Know that feeding therapy is not linear

Unlike the progress you might see in speech therapy, for example, feeding therapy tends to progress at a slower pace. Overall, you’ll want to see an upward trajectory of progress in feeding therapy, but it’s normal for your child to have ups and downs. What you don’t want to see is a plateau over time.

Don’t be surprised if it takes time to see progress in feeding therapy. Some kids are slow to build rapport and feel comfortable with a therapist. If your therapist is answering your questions, being collaborative and is confident in their approach, be patient.

Don’t be afraid to pivot if it’s not working out

If you’re not seeing positive progress over time or if your child’s feeding therapist isn’t a good fit, be sure to raise these concerns. In many cases, the feeding therapist can make improvements.

If results don’t improve, your child may need support from another therapist. Try switching therapists to see how your child responds. If that doesn’t help, your child may need support from another discipline entirely –– such as a gastroenterologist or a psychologist.

Consider the following questions and answers for a potential feeding therapist:

Q: How long have you been seeing and treating children with pediatric feeding disorder?
A: Look for someone with at least a few years of experience.

Q: Are you familiar with the Pediatric Feeding Disorder Consensus Definition and Conceptual Framework article published in the Journal of Pediatric Gastroenterology and Nutrition?
A: If not, look for someone willing to read the article.

Q: Do you have specific education and training regarding pediatric feeding disorder?
A: Look for someone who has additional training to understand the issues.

When therapists finish school, they usually don’t just jump into feeding therapy. Feeding is a specialty within speech therapy and occupational therapy that requires additional training and guidance under an experienced feeding therapist.

Q: Have you seen a child who’s had a similar experience?

A: Finding a therapist familiar with your child’s specific feeding challenges is important. Don’t be afraid to ask this specifically to be sure you’re comfortable with the answer.

Q: Describe your overall approach to pediatric feeding disorder.

A: Look for someone who understands the medical, nutrition, feeding skill and psychosocial domains and is willing to collaborate with a multidisciplinary team.

Q: How do you determine if a child is growing well?
A: Look for someone who follows your child’s growth pattern, not just a standard growth chart.

Q: How do you share the results of diagnostic testing, treatment goals, and other information with me and other providers treating my child?
A: Look for a practitioner who partners with professionals in other disciplines and keeps open lines of communication with them as well as with you. Make sure they are willing to provide you with copies of reports and take the time to go over reports with you.

The way pediatric feeding disorder (PFD) manifests in each child is as varied as the children themselves. But so many stories of parenting children with PFD are the same.

An infant struggles to feed and gain weight. Parents work tirelessly to feed their children and juggle medical visits. They search in the dark for a diagnosis of a complex problem they don’t understand, all while feeling alone and at fault.

Raising a child with PFD is a journey that rarely has a final destination. With the right support and care, it does get easier. This is the story of one mom of a son with PFD and how she’s gone from seeking help to supporting others.

One family’s journey with PFD

From the start, Erin Avilez’s son, Julian, struggled to breastfeed and gain weight. Her doctors were concerned about her baby’s measurements throughout her pregnancy. When her amniotic sac fluid was low, Avilez was induced at 37 weeks.

Julian was born at 5 pounds and right away had trouble sucking and taking in enough food at each feeding. Avilez switched to bottles, but Julian continued to undereat. “Within the first few months, there were already red flags that he was underweight and not getting enough nutrition,” she says.

Avilez and her husband started by switching formulas to see if Julian had some sensitivity to some ingredients. Still, they didn’t see much weight increase. Things got worse when her pediatrician sent Julian to a pediatric gastroenterologist. “That’s kind of where the horror of the story started,” she says.

Julian’s pediatrician and the GI weren’t communicating or working together and sometimes had different goals. “The GI’s only goal was for Julian to gain weight and cared less about how it affected his feeding,” says Avilez.

Julian got a nasogastric tube (NG tube) at three months old. The increase in calories made him vomit a lot, and he regularly pulled the tube out. Any time he pulled the tube out, Avilez would have to call her husband to come home from work so the two of them could force the tube back in. Insurance only covered a few tubes, making this devastating ritual even more difficult. Julian developed an oral aversion that he never had before and wouldn’t even let his parents touch his face. By seven months, Avilez insisted the NG tube be removed.

When Julian’s GI recommended a gastrostomy feeding tube (G-tube) instead, Avilez knew they needed a second opinion. Julian took some formula and solid foods orally, and Avilez thought they could build on that. A new GI at Phoenix Children’s Hospital agreed.

With a new pediatrician and GI, Julian’s doctors started working on finding a diagnosis. He was also able to join their intensive feeding therapy program. “The new GI doctor we saw listened, and he offered empathy and support,” says Avilez.

When Julian was 3.5, his family finally got a diagnosis of what caused his pediatric feeding disorder. A liquid and a food study showed that he has gastroparesis, a condition where the stomach muscles do not work properly to empty waste.

Now that Julian has a diagnosis, he’s able to take medication to help his gastric delayed emptying, as well as an appetite stimulant. He also drinks Ensure Clear to add more calories to his diet. Julian has an aversion to any formula or dairy because of his early experience with the NG tube.

In the past six months, Julian was finally registered low on the weight chart for the first time. “This is huge for him,” says Avilez.

Still, says Avilez, their struggle is never far from her mind. She dreads visits to the pediatrician when she knows Julian will be weighed. “Even today, a week before his appointments, I start getting stressed out because I know we have to get on the scale,” she says.

Finding support from other families with PFD

Julian was born during the pandemic, and Avilez left her job as a social worker to take care of him and to get to all his appointments. She suffered from postpartum depression and felt overwhelmed, alone and isolated.

“I knew there has to be some type of service out there to help moms like me,” she says.

Avilez searched online and found Feeding Matters. She requested a peer-to-peer mentor and was matched with another mom who shared her experience. That empathy was powerful. “She listened to me. The first time I got off the phone with her, I started crying that somebody understood what I was going through,” says Avilez.

Avilez’s mentor also told her she was doing a great job. “Throughout this process, nobody told me I was doing a good job, not the doctors or anyone on his care team,” she says.

Avilez’s introduction to Feeding Matters was the first time she learned about PFD. “I felt so validated that we weren’t the only ones concerned about not knowing what was going on with our son and not hearing about it from our doctor,” she says.

Today, Avilez is a peer mentor to other parents raising a child with PFD. She’s grateful to have support and to be able to pay it forward. Her hope is that more clinicians and hospitals will inform parents about PFD from the start. “I wish that when you have a child with feeding difficulties, someone from the start would offer resources,” she says.

Key takeaways for supporting your child with PFD

Avilez offers the following advice to parents raising a child with PFD.

1. Find a supportive care team: If the doctor’s not listening, find a more supportive provider. Having a good team in place makes all the difference.

2. Trust your instincts: It’s okay to get a second opinion and ask questions. Keep advocating for your child because you know your child best.

3. Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.

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.