Category: Nutrition
The challenges and triumphs of breastfeeding with PFD: Addressing common concerns and offering expert advice
Published by Feeding Matters on Aug 12, 2024
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.The silent struggle of PFD: Why the prevalent pediatric disorder continues to be under-diagnosed and under-discussed
Published by Amy Delaney, PhD, CCC-SLP on
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:
- Persistent coughing or gagging: Some coughing or gagging is common but frequent occurrences during meals may be signs of a problem.
- Stressful feeding experiences: Feeding should not be super challenging or miserable. If you dread mealtime, this is an indication of an issue.
- Sleepy during feedings: Especially in infants, sleepiness can signal feeding difficulties.
- Transition struggles: Difficulty moving from liquids to solids or new textures.
- 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
- Ask detailed questions: Inquire about specific food types and textures offered.
- Provide guidance: Offer nuanced advice on feeding progression and when to introduce new textures.
- Educate caregivers: Share knowledge about developmental milestones and readiness for new foods.
- Monitor closely: Pay attention to children with feeding struggles instead of encouraging a “wait and see” approach.
- 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.
Adapted baby-led weaning: A game-changer for pediatric feeding disorder
Published by Jill Rabin, CCC-SLP/L, IBCLC on Aug 09, 2024
When I first introduced adapted baby-led weaning to the family of a 10-month-old girl with complex medical needs, her doctor and extended relatives were skeptical. Complications from Down’s syndrome meant she spent her first seven months in the hospital and relied on a feeding tube for nutrition.
By successfully adapting to baby-led weaning, she’s made a remarkable transition. She eats independently, enjoys family meals and no longer needs a feeding tube. While her success is life-changing, it’s an outcome I’ve witnessed countless times as a feeding therapist and founder of adapted baby-led weaning (ABLW).
ABLW is a modified version of traditional baby-led weaning for babies with motor or feeding challenges, such as pediatric feeding disorder (PFD). It follows the principles of transitioning to solid foods originally pioneered by Gill Rapley, PhD. It’’s adjusted to accommodate the needs of children with PFD, neurodivergence and/or delayed motoric capabilities.
What is adapted baby-led weaning?
Adapted baby-led weaning (ABLW) maintains the core principle of child-led feeding to foster motor skills and a positive relationship with food. It incorporates specific adaptations to safely use the approach for kids with additional feeding challenges. The timeline may vary depending on a child’s motor readiness, especially for kids with conditions like Down syndrome.
ABLW involves gradual progression, according to the child’s needs, and features “bridge” tools like silicone food holders and frozen straws to encourage skill development. The clinical team supporting a child with PFD should be involved with the transition to baby-led feeding.
The goal is to set kids up for a lifetime of healthier eating and enjoyment.
Starting adapted baby-led weaning for children with PFD
Most children with PFD benefit from adapted baby-led feeding. The process can take longer than typical baby-led weaning, but it eventually leads to safer eaters, who chew better and have improved digestion. ABLW helps children grow to become intuitive eaters who manage various food types –– regardless of shape, size or texture. Additionally, this approach can sometimes eradicate food aversions.
Following are some general steps to start. Each step includes many components.
Step 1: Assess readiness
Before starting, ensure your child is developmentally ready. This includes sitting with minimal support and showing interest in food. You can begin by offering teething toys.
Step 2: Choose appropriate foods
Begin with large, easy-to-hold foods like raw carrot strips or steak strips. If you’re just starting out, be especially careful when your child develops more hand and jaw strength. They may be able to get pieces off. When that happens, you’ll have to move away from those foods until they are older and have more evolved skill.
The goal isn’t to eat the food for nutrition or calories. Rather, it’s to practice hand-to-mouth coordination, texture and tasting. Introduce preloaded spoons with mashed foods and open-cup drinking with nectar-consistency liquids.
Step 3: Gradual progression
As the child’s skills improve, introduce foods like banana spears, cheese sticks, toast strips, waffles or pancakes. The goal is to eventually progress to small pieces of food while focusing on skill development rather than volume intake.
Do’s and don’ts of adapted baby-led weaning
Do’s:
Work with a clinician knowledgeable about adapted baby-led weaning
: tailor the approach to your child’s needs by collaborating with a feeding therapist who understands baby-led weaning.Encourage self-feeding
: Let children feed themselves as soon as they’re ready to start ABLW, whether with foods or preloaded spoons.Use bridge devices
: Tools like silicone feeders and frozen straws can help develop chewing skills and alleviate parental concerns.Monitor progress
: Adjust the food’s shape, size and texture based on the child’s developing skills.Emphasize skill development
: Focus on improving hand-to-mouth coordination and gumming or chewing to make eating a learning experience.
Don’ts:
Avoid small, hard foods
: When your baby is just starting ABLW, offer big foods, like a mango pit. Small foods can be choking hazards, especially for children with motor difficulties.Don’t rush the process
: Allow your child to develop independently. This approach may take longer but leads to safer and more skilled eaters.Don’t be afraid to let your child get messy
: As your child explores self-feeding, adapted baby-led weaning is messy, especially in the beginning. If the mess is a struggle, try ABLW before bath time.
Common misconceptions of baby-led weaning for kids with PFD
Myth 1: Adapted baby-led weaning is dangerous
People sometimes think baby-led weaning is dangerous because they believe it means the child eats only table foods and uses no spoons or purees. However, this is not true. Baby-led weaning means babies feed themselves from the onset. Parents might load a spoon with food and hand it to the baby, who then feeds themselves.
In the case where parents pick the wrong size and shape of food for their child’s skill level, self-feeding can be dangerous –– especially for children with feeding challenges. If done correctly with the help of someone knowledgeable, adapted baby-led feeding is not dangerous.
Myth 2: Baby-led weaning is only for typically developing kids:
Baby-led weaning can be adapted for children with feeding difficulties or neurodivergent conditions, including those who are tube-fed.
Myth 2: Babies need teeth to start baby-led weaning
Babies can gum their food effectively and safely start baby-led weaning without teeth.
Myth 3: Gagging means choking
Gagging is a protective reflex and a normal part of the eating learning process. Choking, on the other hand, is silent and requires immediate intervention.
Myth 4: Kids with NG-tubes or G-tubes can’t try ABLW
You absolutely can try ABLW for kids who have complex feeding issues, such as tube feeding or aspiration. You’ll need to work closely with experts and take precautions, such as adjusting thickness or modifying what you present. There are ways to offer different foods safely.
Some helpful baby-led feeding tools for kids with PFD
Fresh fruit feeder
: A silicon food holder for introducing new textures safelyBig straws for frozen foods
: Useful for practicing sucking and drinking skillsPreloaded spoon
: Helps teach self-feeding with mashed foodsFirst open cup
: Allows children to drink from an open cup at a slow rate
It’s hard to imagine needing to teach baby-led weaning to previous generations of parents when table food was the only option for children. Baby-led weaning is a natural and effective way to teach children self-feeding skills, while pouches of baby food and toddler-size cutlery are relatively new concepts.
Baby-led weaning can be particularly beneficial for kids with PFD, offering therapeutic benefits and fostering a more positive relationship with food. Always seek guidance from a feeding therapist, registered dietitian or doctor to ensure the approach is safe and tailored to your child’s needs.
For more information or access to adapted baby-led weaning education resources, go to JillRabin.com. Click
here to see the book Rabin co-authored with Gill Rapley, the pioneer of baby-led weaning. Click here to see more helpful products for baby-led weaning.Celiac disease and PFD : A guide to navigating both diagnoses
Published by Feeding Matters on May 23, 2024
When a child with pediatric feeding disorder (PFD) is also diagnosed with celiac disease, adjusting to a gluten-free diet can be even more challenging than usual. Keeping a child with PFD fed and nourished can be a full-time job. Seeing their restrictive diet shrink even more can be overwhelming.
Erin Feldman, RD, a dietitian for over 25 years at Cedars-Sinai, has supported countless families in their journey to transition to a gluten-free diet. “I’ve never had a patient come back and say they decided not to be gluten-free. All of our patients are compliant. We help them figure it out,” she says.
Understanding celiac disease
Celiac disease is an autoimmune disorder where ingesting gluten leads to damage in the lining of the small intestine. Gluten is found in wheat, barley and rye. Even traces of gluten prevent nutrient absorption for those with celiac disease. The disease is chronic, and the only treatment is a strict, lifelong gluten-free diet. This includes avoiding cross-contamination, such as double dipping a knife used for bread in a peanut butter jar.
The hardest part of maintaining a gluten-free diet can be avoiding cross-contamination and the many processed food products that contain traces of wheat.
Creating a gluten-free home
Transitioning to a gluten-free home involves more than just changing the food your child eats. Cross-contamination is a significant risk, so many families choose to make the whole house gluten-free when a child has celiac disease.
For some families, going gluten-free is cost-prohibitive or too disruptive for other family members. In this case, families need two of many products and even some appliances — like a gluten-free toaster.
Feldman recommends having separate storage for gluten-free items to prevent mix-ups.
Identify foods your child will eat
It can be a big challenge if your child with PFD and celiac disease eats a limited number of foods, and many of them contain gluten. Feldman recommends identifying foods your child will eat and then finding gluten-free substitutes that are as familiar as possible. “They’re not going to be able to adapt and eat completely different foods. We work with our families to make sure we give them ideas of things that are as close to what they’re used to as possible,” she says.
The good news is that the gluten-free diet fad in the U.S. means new gluten-free products are on the market every day.
Feldman recommends a few tips to help your child adapt:
- Serve the new products with your child’s favorite dips, like ranch dressing or ketchup.
- Involve your child in the food selection and preparation process.
- Make finding substitute products a taste-testing game where you rate the options.
Checking food labels for gluten
In the U.S., nutrition labels list food allergens like soy and wheat, but they don’t list gluten. That makes learning to read labels to identify gluten-free products crucial. Many processed foods contain hidden gluten. “People are surprised there’s gluten in soy sauce or anti-caking agents in shredded cheese,” says Feldman.
Following are some not-so-obvious ingredients to watch out for:
- Salad dressings and marinades can contain soy sauce or malt vinegar
- Cream-based soups often contain flour as a thickener
- Processed meats often contain wheat as a filler and binding mechanism
- Seasoning mixes and spice blends can contain wheat flour as a filler or anti-caking agent
- Modified food starch
- Malt extract, malt flavoring and malt vinegar
- Licorice and similar candies contain wheat
Many hidden gluten byproducts in processed foods don’t exist in a home kitchen. The more you cook from whole ingredients, the easier it is to avoid gluten.
Eating out safely
Eating gluten-free doesn’t mean you have to give up on dining out, but it does require careful planning. There are even gluten-free restaurants in many metropolitan areas.
Some restaurants can accommodate gluten-free requests. Feldman recommends calling ahead during non-peak hours to discuss your needs with a manager or chef. “Ask about their menu and food preparation practices such as using the same oil for french fries and chicken nuggets. You’ll get a good sense when you start asking questions if it’s safe or not,” she says.
Once you’re in a restaurant or hotel, Feldman encourages parents to feel empowered to always ask rather than assume there’s nothing gluten-free. “If there’s nothing on the menu, ask if there’s something they can create from these ingredients,” she says.
Feldman also recommends starting by eating out for breakfast, since foods like eggs, fruit and yogurt are usually gluten-free.
Monitoring nutrient intake
Gluten-free diets can sometimes lack certain nutrients since they aren’t fortified with vitamins and minerals like bread products. Once your child adjusts to a gluten-free diet, you’ll want to be sure they are getting the micronutrients they need. Speak to your provider about adding a supplement if necessary.
Some important nutrients to monitor on a gluten-free diet include the following:
- Vitamin D
- Calcium
- Vitamin B12
- Folate
- Iron
If your child will eat it, consider incorporating naturally gluten-free nutrient-rich foods like leafy greens, nuts and fortified dairy or plant-based milk.
As any parent of a child with PFD knows, transitioning to a new diet is a significant adjustment. With the right approach and resources, families can manage it successfully. “This is a learning curve. You’re not going to be perfect right away. Give yourself grace and patience. With time and support, it becomes more manageable,” says Feldman.
The content in this blog is not intended to substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Nutrition education in schools: A teacher’s reflections
Published by Gabi Lake on Mar 21, 2024
Recently, I heard first-hand from a PFD Parent about how challenging it is to navigate feeding differences within the school system. She shared that her child came home saying that a friend had said, “Your lunch is not healthy,” in reflection of the school’s teachings around nutrition. Due to her daughter’s restrictive diet, this comment became detrimental to the child.
Teaching nutrition in school
I spent eight years in the classroom, and every year our established curriculum had a unit on nutrition. We’d be instructed to teach about the primary food groups and the “My Plate” template that shares how to diversify your diet and eat all the food groups within a meal. Not only this, our cafeteria walls were also lined year-round with similar concepts and “clever” taglines like: “Fruits & Veggies Make Your Plate Great!”
I never really thought much about how this could be harmful, and how, without even trying, these concepts might traumatize some of my students with pediatric feeding disorder.
When you do not struggle to eat – whether that be in one domain or all four – it is easy to say, “Yes, you need to eat protein, grains, fruit, vegetable, dairy at every meal.” But for someone who might only consume four foods total – that is not only unrealistic, but unempathetic towards their lived experience.
“Build a Meal” lesson with PFD
One year, I taught a lesson that required each student to search through magazines and “build a meal” by cutting out foods, as applicable to the “My Plate” portions.
One of my students with PFD started off okay. He found apples first (one of his safe foods) and pasted it to the “FRUIT” section of his plate; he found popcorn and pasted it to the “GRAIN” section. Easy, simple, fun. Then came the other three – protein, dairy, and his least favorite of all, vegetables.
Knowing that he would struggle with finding items, I sat with him through this activity as we flipped through the magazines together. Any time I saw a vegetable, I said, “Hey, what about a carrot? Is that a vegetable?” His whole body said “No,” but his mouth said, “Yes.” I watched as he visibly held back his nausea and grabbed the magazine with his index finger and thumb as if it were a smelly shoe.
“It’s okay, we don’t have to put a carrot… let’s keep looking!” I told him, seeing he was clearly uncomfortable. Through every one – gagging, just at the sight/thought of these foods being on his plate. Same with the protein, same with the dairy.
We finally landed on pizza. I said, “Hey, I’ve seen pizza in your lunchbox! That has grains, protein, AND dairy!” We talked through how cheese and dough provide nutrients to our body; I even wound up counting the tomato sauce as a vegetable. With his apple, popcorn and pizza, we agreed that he had met all his food groups. He seemed content with that, especially since it meant he didn’t have to keep looking at pictures of so many wretched foods.
He didn’t leave the activity in tears or distress, but he may have left with the thought that his safe foods weren’t safe or good enough. When, in fact, those foods are keeping him safe.
Approaching nutrition
In reflection and with a growth mindset, I’d like to offer these thoughts:
- What is healthy or nutritious may vary. We must be accommodating and approach foods neutrally to provide equitable support to children who have feeding differences.
- While there’s nothing wrong with encouraging a diverse diet, that should not be the be-all, end-all goal. The goal should be listening to your body and learning to work with it rather than against it. We should be guiding children toward practical tools to develop a positive and safe relationship with food.
So how can we nurture this mindset and as well as our children?
- We should be consulting children and their families on what would help them and develop the curriculum with unique needs in mind.
- We should be working collectively as a society to eradicate diet culture. When all food is neutral, when all body types are acceptable, when support needs are normalized, and accessibility tools are widely-available – these concepts will no longer have a place in the world.
As I reflect on my own journey with food and diet culture, and as I learn and grow to understand PFD more clearly, I truly feel that equitable nutrition is possible and will create a world where children with pediatric feeding disorder thrive.
Gabi Lake is the administrative assistant at Feeding Matters, and was also a special education teacher in the public school system.
Budget-friendly bites: Navigating picky eating challenges in less time
Published by Courtney Bliss on Mar 19, 2024
When parenting a picky eater, we have to discard much of what we learn about food as adults. Diet recommendations to eat a lot of protein, avoid carbs and stay away from fat don’t translate well to kids’ diets –– especially to one who only eats a limited number of foods.
Good nutrition for children and adults involves a combination of different food groups over a week. The quality of that combination is known as the Healthy Eating Index, the gold standard for assessing nutrition.
Each macronutrient fuels the body differently. Some supply quick bursts of energy and others offer steady energy release.
This is why teaching kiddos to listen to their body signals is important. Intuitive eating means paying attention to hunger and fullness cues. This can be particularly challenging for children with pediatric feeding disorder (PFD) because the anxiety of eating can mask hunger cues.
In some cases, the way we label food and the shame around it can make kids’ feeding worse. For picky eaters, worry less about food labels and instead focus on what nutrients are being delivered to your child’s body.
For example, here are some ways to reframe thinking around some typical foods for picky eaters:
- If your child only eats chicken nuggets, consider this a consistent protein and fat source that provides more steady energy.
- If your child only eats air-fried snap peas, this may not be fresh produce, but they’re still full of nutrients, fiber, protein and fat.
4 food categories kids need
There are four different macronutrients our bodies use. Each works a little differently.
Carbohydrates: Our bodies use carbohydrates quickly. They cause glucose to rise and enter the bloodstream faster.
Examples: Bread, crackers, pasta, cookies and cakes.
Fiber: This is technically part of the carbohydrate family, but our bodies don’t use it immediately for energy. Instead, our bodies use it to help food move slower through the bloodstream. They help with digestion and also make our energy last longer.
Examples: Fruits, snap peas, carrots, nuts, beans and whole grains.
Protein: Kids don’t require as much protein as adults. But, incorporating protein-rich foods into meals and snacks can help keep kids feeling full longer. To know how much your kiddo needs, consider protein intake over a week rather than obsessing over individual meals.
Examples: Chicken, fish, eggs, dairy, beans, nuts, nut butter and seeds.
Fat: This is the nutrient families skip the most, especially from parents raised in the 1980s and 1990s when fat was demonized. Fat is a core component to building hormones our bodies need. It releases energy slowly and keeps kids feeling full longer.
We need fat. Your kid needs fat. It’s building their brains and spinal cord. Don’t skip it.
Example: Peanut butter, cheese, avocado and foods cooked in olive oil.
How much of each nutrient your kiddo needs is super personalized. What’s true for everyone is that adding other nutrients to carbohydrates makes energy release longer. (Read: your kids won’t be asking you for snacks every five minutes!)
How to incorporate more healthy nutrition into your picky eater’s diet
In my years helping families of picky eaters, I have seen two common approaches to family meals:
- Those who serve family meals and accept that their child may or may not eat it.
- Those who make a completely separate meal.
If your goal is to get your kiddo to eat more variety and join the family dinner, taking a step back to plan can help you incorporate more of the true variety your kid will eat.
Following are five tips for families of picky eaters.
- Create a meal schedule.
- Combine nutrients for snacks and meals.
Each nutrient provides our body with energy in different ways. Combining foods helps your kiddo feel full longer. For example, eating a carb like a few graham crackers will give a quick burst of energy, but it won’t last. Adding peanut butter and apple slices to a graham cracker combines nutrients to provide a more filling snack. Pairing applesauce with some chips will keep your child full longer than just eating one macronutrient at a time. Eating this way doesn’t honor how the body metabolizes food and instead leans into fast energy releases.
Try to avoid: Providing free access to snacks, like applesauce pouches or a bag of chips, that are more likely to encourage grazing than satiety. - Look for brands with more balanced nutrition labels.
If your child is not particular about the brand you buy, you’ll find that some will have more fiber or protein than others. For example, if there are different kinds of cheese crackers and a nutritional difference, buy the more filling option.
Try to avoid: Feeling guilty about a processed food label when it’s one of few your child eats. Instead, focus on what nutrients might be in it and choose the best option your child will accept. - Make a meal plan based on what your child will eat.
Consider what foods your child eats and then combine them with other nutrients. For example, if your child eats waffles and blueberries, serving them together provides more nutritional balance. Combining “safe” foods over the course of the week will mean your kiddo gets more servings of nutrients like fiber and protein.
- Add some of your child’s “safe” foods to family meals.
Adding foods to family meals that your child likes might make your picky eater more interested. Write out a list of what your kiddo will eat. Then think creatively about how to turn that into five dinners you can rinse and repeat each week. For example, your kiddo loves apples and eats them whenever they’re served. Add apples to the family dinner rotation by serving them on the side, and your child might join the family at the table.
When your child isn’t grazing all day, you allow their body time to digest foods and then get hungry again. The food we eat sends chemical triggers from the belly to the brain. The sensations of feeling full and hungry are often diminished in children who are picky eaters.
Try to avoid: Constant access to snacks. Little bites at a time can reinforce picky eating.
Over the years, I’ve seen even the pickiest eaters increase nutritional variety with time and support. Know that the way your child eats now is not forever. Working on providing different foods is enough.
Courtney Bliss is the owner of Feeding Bliss and is an experienced registered dietitian specializing in pediatrics.
Getting the most out of feeding therapy for PFD: A step-by-step guide to finding the right pediatric feeding therapist
Published by Nicole Williams, OTD-OTR-L, at Desert Valley Pediatric Therapy in Arizona on Feb 15, 2024
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 therapistsFeeding 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 benefitsIn 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 startTo 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 homeAs 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 collaborationFrom 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 linearUnlike 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 outIf 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.
A story of triumph over pediatric feeding disorder
Published by Feeding Matters on
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.
- 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.
- 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.
- Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.
Feeding questionnaire a springboard for physical therapy needs
Published by Karen Crilly, PT DPT, Advanced clinical specialist at Texas Children’s Hospital on Oct 20, 2023
How one physical therapist uses the Infant and Child Feeding Questionnaire to identify a child’s areas of need and how she can help
Feeding challenges never occur in a vacuum. While I’m neither a speech therapist or a feeding therapist, the Infant and Child Feeding Questionnaire® (ICFQ©) from Feeding Matters remains one of my most important assessment tools in my initial encounters with new patients.
The ICFQ was authored in partnership with internationally renowned thought leaders representing multiple disciplines related to feeding. It’s an age-specific tool designed to identify potential feeding concerns and facilitate discussion with all members of the child’s healthcare team – including physical therapists (PT).
Based on the caregivers’ responses to six questions, the ICFQ has been shown to accurately identify and differentiate pediatric feeding disorder (PFD) from picky eating in children 0-4.
Using the feeding questionnaire as a physical therapist
Whenever I meet with a new PT pediatric patient at Texas Children’s Hospital, I spend the first session speaking to the family to determine how we can help the whole child.
For example, I recently was working with a family in the plagiocephaly – head-shaping – clinic at Texas Children’s. When I asked the parent about feeding, she responded that the baby just won’t stay still to eat. That response led me to ask more questions about feeding. I learned the baby has torticollis – tightness of neck muscle that causes the baby to turn to one side. Plus, the baby was dysregulated, which could mean a neurological issue. I asked about reflux, which could be a gastrointestinal issue. I knew how to help in some areas as a PT, and I knew to refer the family to an occupational therapist and a speech pathologist.
I can’t even describe how relieved this parent was. When it came to feeding, everyone else had simply told her to “keep trying.”
While physical therapy focuses on a child’s functional mobility, no movement’s isolated from the rest of a child’s health. Movement takes mental and physical regulation. An infant requires proper nutrition to perform at their highest level. A child without enough calories doesn’t have the necessary energy to make the most progress in physical therapy – or any other therapy, for that matter.
6 feeding questions that help me identify physical therapy patients’ needs
There are six basic questions on the ICFQ that clinicians identify when a child has a feeding issue. As a physical therapist, responses to the questions highlight issues around endurance, function level and the parent’s understanding of the child’s needs.
Following are the six questions and how the responses help me as a physical therapist.
- Does your child let you know when he/she is hungry?
This question gives me insight into how well parents understand their child’s communication cues. Recognizing an infant’s or nonverbal child’s cues allows parents to know when a child is hungry, uncomfortable or tired. This communication is essential to the parent’s ability to do PT exercises at home.
- Do you think your baby/child eats enough?
Often, the responses to this question are cultural. Among the patients I see at Texas Children’s, I find some cultures expect babies and children to eat more than others. This is an opportunity to educate parents about what is typical. For those babies and children not getting enough nutrition, it’s a chance to refer them to specialists who can help.
- Do you have to do anything special to help your baby/child eat?
This question helps me gauge a baby’s stamina level. The baby may be having trouble coordinating breathing with swallowing. This tells me that in physical therapy, I need to work on the baby’s ability to open her chest out wide and back in. The goal is to increase the baby’s endurance to work for 30 minutes of exercise. That causes fatigue at the time, but it actually builds stamina for later.
A baby who doesn’t have the endurance to finish feeding isn’t likely to have the energy to make as much progress in physical therapy. This makes getting more calories into the baby especially relevant for PT.
- Do you have to do anything special to help your baby/child eat?
This question helps me determine when a baby is dysregulated. It means I need to refer to a specialist who can help the family uncover why feeding isn’t typical.
In physical therapy, I’ll determine whether the child needs to work on muscle retraction. This is one of the issues I see often in infants, especially, and sometimes even older children who are having trouble feeding. Retraction takes them away from their midline without being able to find their center again easily. This makes it difficult to eat.
As a physical therapist, I’ll work with the baby on midline rotation. We work on coordinating the movement of opening and closing the arms and chest. The baby’s shoulders should expand back and then be able to come back to center. The baby should be able to find his flexion and make symmetrical motions in the upper and lower body.
Working on the body in this way can improve feeding, supporting the therapy that speech pathologists and occupational therapists are doing as well.
- Does your baby/child let you know when he is full?
When a baby is not recognizing fullness, this indicates there might be a chronic condition. Once full, a baby should cry, turn the head, push away the breast or bottle or spit out milk. But if a baby just keeps eating, this is a cue that the family needs a referral to a specialist.
As a physical therapist, it helps me identify a baby’s level of function.
- Based on the questions above, do you have concerns about your baby/child’s feeding?
Responses to this final question provide an opportunity for education. I’ll know how much information I should give parents on typical development for their child’s age and stage.
It’s also an opportunity to encourage parents who need a referral to go ahead and make that appointment.
As physical therapists, we’re not just looking at the legs and the feet. Treating our patients means treating the whole patient.
Knowing how a child is feeding doesn’t only alert me to a patient’s nutrition needs. It helps me identify other issues a child might be experiencing. Each question in the ICFQ paints a picture of the whole child’s needs.
Karen Crilly, PT, DPT, MAPT, CBIS, is an advanced clinical specialist at Texas Children’s Hospital who has dedicated her professional life to forming a strong background and expertise in the assessment and treatment of infants and children with chronic and complex developmental and/or neuro-motor impairment.
Overturning insurance denials for PFD
Published by Feeding Matters on Sep 20, 2023
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.