Author: Jalenna Francois
Collaboration with Arizona Women, Infants, and Children (WIC) program
Published by Feeding Matters on Mar 25, 2023
Recently, Feeding Matters has been working closely with the Arizona Women, Infants, and Children (WIC) program. WIC is the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) which provides US federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age 5 who are found to be at nutritional risk.
We are excited to share that as a result of our relationship with Arizona WIC, the nutrition coordinators and directors, who are the front line folks supporting families eligible for this program, have been trained on pediatric feeding disorder (PFD). Specifically, Arizona WIC coordinators and directors are trained on the PFD Co-Morbidity and WIC Risk Code spreadsheet so that any time one of them uses one of the codes associated with PFD, they will be prompted to refer the family to Feeding Matters and our Infant and Child Feeding Questionnaire. For example, if a child eligible for Arizona WIC is noted as having a genetic or congenital condition, they would be referred to Feeding Matters, specifically to our questionnaire to dig in deeper on their child’s feeding and have a source of support through us.
“This collaboration between the Arizona WIC Program and Feeding Matters ensures that children who have a known condition that often co-occurs with pediatric feeding disorder are more easily identified, identified quickly, and are referred to Feeding Matters to get the support they need.”
Brittany Howard, MS, RDN, CLC (WIC Nutrition Services Administrator)
The collaboration does not end there. They have also added Feeding Matters as a resource to their online education courses that they offer to all of their staff.
We know that PFD impacts one in 37 children under the age of five in the United States and are confident that this partnership will lead to earlier identification and intervention of children with PFD.
It’s ok to cry
Published by Feeding Matters on Mar 24, 2023
We recently held a contest asking for designs for our PFD Awareness Month merchandise store. We are excited to share our contest winner! This design was created by Madison O’Brien, an Oregon based Speech Pathologist who also has a sibling with a history of a pediatric feeding disorder.
Madison shared her inspiration for the design:
“Parents of children with a Pediatric Feeding Disorder experience high levels of stress and are more likely to develop anxiety and depression than parents of children without feeding difficulties (Rodriguez 2022). So many parents of kids with PFD have expressed to me that they’re barely holding on. I just want them to know they’re not alone and that it’s valid to feel that way.”
Thank you for your design Madison! You can purchase this design, and others, at our merchandise store here.
Pass on the peas; pass the pizza, please
Published by By Simona Lourekas, MS, RD, LDN, CHES on
Is your child getting enough nutritional variety? How to know and what to do about it
By Simona Lourekas, MS, RD, LDN, CHES
Mass General for Children Pediatric Nutrition Center of Excellence, Center for Feeding and Nutrition
Nutritional variety for children ages 0-5 is extremely important to the growth and development that happens in those early years. That said, it’s normal for young children – especially toddlers – to go through phases of picky eating as they explore their world and assert their independence. In honor of National Nutrition Month this March, read the blog below from expert pediatric dietitian Simona Lourakas of Mass General Hospital for Children to know what to expect when feeding young children and how to ensure they get the nutritional variety they need.
When your baby starts eating solid foods, it’s not uncommon to expect that transition to go well. No matter that the foods are only as exciting as room temperature, smashed peas. Other tots the same age are happily gumming blended foods.
But, as hard as you try, your child refuses to eat many of the foods you offer. Is this a sign of age-appropriate picky eating? Or is it an indicator of a more significant issue?
What is nutrition variety?
Nutritional variety for adults and children means eating foods from all food groups: grains, proteins, dairy, fruit and veggies. There are other calcium fortified foods for those who can’t eat dairy. And many fruits and veggies have a lot of nutrition overlap.
Exposing kids to solids builds up their feeding and oral motor skills. It helps prevent food allergies later on and increases diversity in the gut. For breastfed infants, iron-rich proteins can be an important food group such as iron fortified cereals, beans, leafy vegetables and lean meats.
At around nine months old, a limited variety or quantity of solids will start to impact growth, nutrition and oral-motor skills.
Why nutrition is so crucial for young children ages 0-5
Nutritional variety is critical, affecting every area of children’s growth and development. A study conducted by Feeding America shows that malnourished children:
- Cannot learn as much, as fast, or as well as peers
- Have more social and behavioral problems because they feel bad and have less energy
- Require frequent doctors’ visits
- Are at risk for cognitive development during this critical period of rapid brain growth
The kinds of nutrition, care, stimulation and love children receive during these critical first years of life determine the brain’s architecture and central nervous system. Identifying and treating feeding and nutrition problems are crucial to supporting children’s cognitive, physical, emotional and social development, as well as the caregiver-child relationship.
How to know if your kid is getting enough nutritional variety
Like anything in parenting, there’s a lot of pressure to compare your child’s eating to peers, especially once children enter daycare or preschool. This only adds to the stress parents can already feel around feeding their children and ensuring they get the nutritional variety they need.
Considering the size of your hand to your child’s hand is a good reminder of how small a child’s portions need to be. A portion of protein is only about the size of the child’s palm. A grain serving is the size of a closed fist.
Most children will not eat all five food groups in a meal and maybe not even in a day. Instead, consider what your child eats over the week. They’re likely getting enough nutritional variety if they eat foods from all food groups over that period.
What to do if you’re concerned
Developing a healthy eater is challenging for many parents. Even for children without any feeding issues, this can take time, patience and persistence. Children with food allergies, autism, sensory concerns, premature birth or medical complications will need a more specialized approach to eating.
Following are some signs of feeding issues:
- Accepting fewer than 10-15 different foods
- Missing entire food groups
- Slow growth
- Delayed progression with advancing textures
- Anxiety and stress surrounding meal times
- Refusing to eat or self-feed
- Missing food groups
- Concern for aspiration (choking or coughing while feeding)
Speak to your pediatrician if you are concerned about your child’s eating or nutritional variety.
Tips for parents to add nutritional variety to kids’ diets
1. Know that picky eating is normal for toddlers.
It’s normal for toddlers to have food preferences, such as more fruits vs. vegetables, grains and dairy.
2. Consider adding fortified foods or nutritional supplements.
For children who can’t have dairy, some fortified pea or soy milks are a suitable replacement. For children who are missing other food groups, fortified foods like cereals or supplements, like an age-appropriate multivitamin or formula, can make up for some of that missing nutritional variety.
3. Introducing new foods takes time.
It can take offering a food 10 or more times before a child will accept it. Add new foods with nutritional variety together with familiar foods. This will reduce the pressure or forcing your child might feel.
3. Involve your child. Children of all ages can help prepare and choose foods in safe, age-appropriate ways.
4. Allow children to play with new foods.
Food play is a great way to introduce new tastes and textures without making children feel pressured to try it. Some of the new food will often end up in young children’s mouths this way.
5. Avoiding grazing.
After one year, aim for three meals a day, with 1-2 snacks. Offer appropriate amounts of milk. The American Academy of Pediatrics suggests 16-24 ounces per day of whole cow’s milk for 1-2 years and 16 ounces per day of low fat milk children 2+ years. Avoid juice. Grazing all day affects appetite at meal times.
Parents are doing their best
When it comes to feeding your child, know that how much your child eats doesn’t define how well you’re parenting. A parent’s job is to provide food and age-appropriate nutritional variety. It’s the child’s job to eat it.
Parents who offer food in the same way to siblings may find that one has feeding difficulties while the others don’t. As hard as it is to keep from comparing children to peers, including siblings, know that feeding issues are complex.
If you’re concerned about your child’s feeding, know you are not alone. Early detection and treatment of pediatric feeding disorder is critical to affected children’s long-term health and well-being. Check out our six-question screening tool on our website and reach out if you need more support.
Simona Lourekas, MS, RD, LDN, CHES is a registered dietitian in Pediatric Gastroenterology and Nutrition at Mass General for Children, a teaching hospital of Harvard Medical School. She also works with post-acute care rehab Franciscan Children’s.
FROM THE PFD ALLIANCE: A FOCUS ON EDUCATION
Published by Amy Delaney, PhD, CCC-SLP on Mar 22, 2023
As we approach our 10th Annual International PFD Conference, I look forward to learning from expert colleagues about new ideas and strategies that we can use in the care of children with PFD. It comforts me knowing that Feeding Matters has worked diligently to offer content that has been both reviewed for bias and is rooted in evidence. This makes me reflect on the current educational landscape and how it has changed over time.
Thinking back to when I first entered the field (and yes, I’m aging myself), sources for educational content were textbooks and hard copies of journal articles, either arriving in my mailbox or checked out by me at the library. Unfortunately, these old-school sources were nearly outdated by the time they entered my hands. In-person conferences were the only method for me to learn what things were at the cutting edge from my peers and scientists in the field.
Learning today has never been easier! Today’s technology affords endless formats and venues from which we receive information. We have access to first-hand information directly from researchers, clinical experts, and parents. We see examples of different disorders and impairments and clinically validated intervention strategies while standing in line for coffee, or even while on a walk.
Unfortunately, access to everything all the time can be overwhelming, and it may be difficult for a learner to navigate material without a good understanding of its strengths and potential weaknesses. It may seem that everyone is an expert and it’s hard to discern that the information being shared may not be objective, evidence-based, and/or appropriately interpreted. It may be difficult to know which sources to prioritize for one’s learning.
What are my best options? Who am I listening to and what is the underlying evidence? For social media, if one source has more followers than another, is it more likely to be correct or validated? Who is vetting the information? Here are a few pitfalls to keep in mind:
- Saying something with confidence and fancy graphics does not make it sound evidence.
- A greater number of followers does not guarantee information is superior to that from a source with fewer followers.
- Be mindful of individuals who discount or contradict what you have learned to be reliable and clinically validated information.
- Conversely, be mindful of individuals who purport that information is accurate because it’s how it has always been done.
- Is the information based on published studies or other peer-reviewed content?
- Is the source only promoting a product?
- Is the source acting in a professional manner that is ethical and considerate of other opinions?
As we continue to navigate our educational options, consider some of the following suggestions:
- Use multiple sources for learning. Maintain a broad diet of information that includes social media, webinars, and in-person meetings. A broad educational repertoire is always best.
- Dig a little deeper into a new source of information. Learn about your favorite vloggers and what their experience may be. What is their profession and their training? What population of children do they see? Know who you are listening to and trusting to contribute to your clinical journey.
- Think critically about what you’re learning. Does it make sense? Does it continue to enhance your knowledge and practice? Does it contradict well-known evidence?
- Rely on your professional organizations to review the current state of information and evidence and provide experienced perspective on how new ideas may fit into established paradigms.
- Advocate that we need pediatric feeding and swallowing taught at the university level to give everyone a foundation.
We, as a community of PFD providers and families, must lift each other and support each other in our learning to advance the field and the lives of children and families with PFD.
Amy L. Delaney, PhD, CCC-SLP
PFD Alliance Education Chair
Why clinicians should attend the PFD conference
Published by Brianna Miluk, MS, CCC-SLP, CLC on Mar 08, 2023
The Pediatric Feeding Disorder conference emphasizes kindness, community and communication
The first time I joined the International Pediatric Feeding Disorder (PFD) Conference, I sat alone in my sunny South Carolina office, anticipating a typical academic research virtual presentation that would count for some CEUs.
Instead, what I found was relatable and practical content that I wanted to share with every clinician I knew.
I’ll never forget a particular workshop by Dr. Kay Toomey on Picky Eaters vs. PFD vs. ARFID: Differential Diagnosis Decision Tree. At one point, I got so excited about the presentation that I leaped out of my chair and clapped enthusiastically. Now, anyone who knows me sees that I have a lot of energy, so this wasn’t totally out of character. Still, I’ll admit I looked a little strange in my office, shouting with glee. When my husband came running, I couldn’t resist exclaiming, “THIS IS SO GOOD!”
It’s no exaggeration to say that the first time I attended the Feeding Matters International Pediatric Feeding Disorder virtual conference in 2018, I was hooked.
The conference isn’t just an opportunity to check off your requirements box for ASHA, AOTA or ACCME. It’s a virtual gathering of clinicians and families all motivated by a singular goal: helping more children and families access the care they need for pediatric feeding disorder.
As part of the conference planning committee for 2023, I can attest that our goal for every presentation is to deliver practical takeaways for families and clinicians. This is part of what makes the PFD conference so powerful.
It’s tricky to organize a virtual conference. Besides any potential technical glitches, creating a sense of community and conversation is challenging. But the PFD conference is unlike any other I’ve attended. There’s a sense of kindness, community, and communication that all attendees feel throughout the program.
What clinicians will benefit from the PFD conference
The PFD conference is ideal for any clinician serving children with feeding issues from birth through adulthood. This includes:
- Occupational therapists
- Speech and language pathologists
Because the program is so family-driven, I even encourage caregivers to attend. Everyone benefits when they learn about different methods and what the research shows.
4 reasons to attend the PFD conference
There are many reasons to take time from your busy clinical schedule to attend the conference. The following are just a few.
Learn practical, innovative interventions and strategies – and how to apply them with families
Like any continuing education, the pediatric feeding disorder conference highlights the latest research and interventions. This conference is different because the presenters go one step further to show how to apply that information to our day-to-day work. Every course I attended focused on how an intervention is only as good as it is for an individual family. As a speech therapist, I see how this mindset matters. I can have all the research in the world at my fingertips, but it’s not practical if none of it works for the family in front of me. That clear focus across all the workshops means that at the PFD conference, I can walk away with strategies to apply immediately.
Build connections across fields
Making friends and forging new professional relationships is not usually a goal for a virtual conference, but that’s what happened at the PFD conference. The chat is active, and the people are friendly. I’ve made real-life friendships with clinicians in my area. I would never have met them outside of that opportunity.
When providers of various backgrounds work together, patients benefit.
Become a stronger advocate for clients
The PFD conference has helped me grow both in my practice and as a patient advocate. I’ve gained knowledge and leadership skills that help me articulate what my clients need, especially when working with other clinicians who aren’t as familiar with PFD and the diagnostic code.
Each year, I leave with a strong call to action to continue advocating for children with PFD and their families. The conference empowers clinicians to hold each other accountable for higher standards of care.
Raise awareness of how trauma-informed care relates to PFD
I’m most excited about this year’s conference’s keynote address, Healing Feeding Trauma: It takes a village, from Dr. Anka Roberto DNP, MSN-MPH, APRN, PMHNP-BC. Bridging the gap in education on how trauma-informed care is essential to treatment for PFD is so important. Spotlighting this topic as the keynote underscores how important it is to heal feeding trauma for the child and the entire family unit.
Every year I’ve attended the PFD conference is better than the last. I don’t doubt that this year’s 10th annual conference will be the best one yet. See you at the conference!
The 10th annual international PFD virtual conference is April 13-15. Register, see our schedule and speaker roster and more here.
Brianna (Bri) Miluk is a speech-language pathologist and certified lactation counselor in Greenville, South Carolina. She has a clinical focus on pediatric feeding and swallowing in infant and medically complex patient populations. Bri is an advocate for information literacy, evidence-based practice, and trauma-informed care, including neurodiversity-affirming practices. She is also an Instructor for Pennsylvania Western University. She is a PhD student with a research focus on disseminating or research and misinformation in speech language pathology on social media. She hosts the podcast, The Feeding Pod, and teaches the Pediatric Feeding Mentorship Group course. Follow her on Instagram @pediatricfeedingslp.
Parents’ Guide to Helping Your Baby with Slow Growth: Expert Tips and Advice
Published by Mary Anthony, RN on Mar 03, 2023
Pediatric developmental nurse answers questions on slow growth, lack of growth, weight loss
Expectant parents have all sorts of worries leading up to birth, but feeding your baby and slow growth usually aren’t among them. You assume your newborn will suck from the breast or a bottle. When this doesn’t happen easily, bringing home your baby becomes more complicated.
Babies with slow growth, lack of growth or weight loss typically spent some time in the NICU and may even have a tube to supplement feeding.
In many cases I see, parents are sent home without a feeding plan when their babies are discharged.
What causes slow growth, lack of growth or weight loss in infantsThere are many reasons infants experience slow growth, lack of growth or weight loss, which can all sometimes be called failure to thrive. Common ones include:
- Premature birth
- Trouble latching
- Medical conditions
I’ve seen countless overwhelmed parents caring for newborns who require extra support for feeding. This is challenging in the best of circumstances when parents have a lot of help from family and friends.
It’s nearly impossible for those with fewer resources.
Families need more support
First time parents are inundated with an overwhelming amount of new information. The learning curve for managing a newborn is significantly compounded when the baby has slow growth, a lack of growth or weight loss. This is often called “failure to thrive.”
Parents of these babies often lack all the tools and information they need to help their babies grow and thrive.
It’s my job in Maricopa County, Arizona to fill that gap.
In one telehealth visit, I spoke to a mom whose baby was born at 24 weeks and had an NG-tube. Through our conversation, I learned she had a formula prescription, but she didn’t have a feeding plan.
The mom didn’t know when to increase the amount of formula, when to offer oral feedings or even when to visit a gastroenterologist (GI). I helped her develop a plan and get an appointment. Her experience wasn’t unusual.
When a baby leaves the hospital with a feeding tube or after treatment for weight loss or slow growth, hospital doctors assume that pediatricians will ensure the baby’s feeding needs are met. Pediatricians assume the GI manages the feeding plan. And the GI often doesn’t see the baby for months.
More support for these families can make the transition to home easier.
In Arizona, any baby who’s in the NICU for five days or more is eligible for support from a pediatric developmental nurse for up to three years. This includes at least four visits a year in the first year.
I’ve seen firsthand how support is crucial for overwhelmed parents, especially within 14 days of discharge.
Customized care to help babies with slow growth thrive
The causes of slow growth and weight loss are many. This makes one-on-one consultations essential to diagnosing the problem and providing customized support.
In one extreme case, a baby was admitted to the hospital for feeding issues and weight loss. After discharge, I made a home visit and asked the mom to show me how she feeds the baby. She only had one bottle and a nipple caked with dried powder. This baby was sent to the hospital for feeding issues, but nobody assessed the mom to see what she was actually doing at home to feed the baby.
In another case, I met with a mom whose baby was discharged without adequate supplies for her baby’s feeding tube. She adjusted the baby’s formula and was adding her own mixes. She needed more adhesive to keep the NG-tube inserted, so she used adult Tegaderm. Still, the tube wasn’t staying in place. While they had already visited the pediatrician, the mom hadn’t communicated her challenges because she didn’t know any differently.
It’s these kinds of early struggles that can make developing pediatric feeding disorder (PFD) more likely, even for those children who outgrow their initial challenges. Getting these families access to early support can make all the difference.
How parents can improve feedings at home in cases of slow growth, weight loss or feeding tubes
Ask for a feeding plan
Key to helping parents deal with feeding challenges is providing better instructions when children are discharged from the hospital. NICU nurses are great about showing parents how to insert the NG tube, check placement and when to call for help.
Be sure to also ask when to increase the calories, when to visit a GI and when your child no longer needs the tube.
Get emotional support
With all the focus on feeding a baby with slow growth, lack of growth or weight loss, it’s hard to focus on self care. But it’s essential.
Moms need rest and breaks, especially those who are postpartum and are double feeding – pumping and giving bottles. Rally your support among family and friends. Don’t expect to be able to handle everything alone.
Set up a treatment space in your home
If your baby has a feeding tube, it’s important to designate a treatment space. Make sure this isn’t a crib, couch or play area. This helps your baby know what to expect, rather than fear having the tube inserted at any point in the day.
Hold your baby during feedings
Whether you’re bottle feeding or tube feeding, it’s important that you hold your baby during feedings. This helps with bonding and makes your child feel more comfortable eating.
Get in touch with Feeding Matters
If you’re struggling with feeding challenges, you don’t have to walk this road alone. At Feeding Matters, we have many resources for parents to answer questions and provide social and emotional support. One of our most helpful support programs is peer to peer mentoring, Power of Two.
Ensuring parents get support for slow growth, lack of growth and weight loss is crucial to mitigating the risks of developing pediatric feeding disorder (PFD). Not all parents will have access to a pediatric developmental nurse, home health or coordinated support between their pediatrician and a GI. It’s essential that parents get the information they need from the start, before being released from the NICU.
Babies and their parents depend on it.
Mary Anthony has been a pediatric nurse for nearly 40 years and is head of the High Risk Perinatal Program for Maricopa County in Arizona.
Power in Pause, Power in Reflection
Published by Jaclyn Pederson, MHI on Feb 22, 2023
Dear Friends of Feeding Matters,
I am so pleased to be back after a wonderful (and messy and loud!) maternity leave. I return ready to fiercely advocate for children with PFD, their families, and the professionals who treat them.
A lesson that has helped me recently in coming back after maternity leave is finding power in the pause. Much of what I do here at Feeding Matters involves thinking, setting strategy, and empowering the team. We have goals that will take 15 years to accomplish and some that will take three months. It can be easy to get pulled into one of the many areas of the PFD system of care that need attention and admittedly, it is sometimes hard not to react. But I’m learning there is power in pause and power in reflection. This space allows me and the Feeding Matters team to stay focused on strategy and the areas that will make the largest impact.
With this focus on our strategy, I have a few general aims that I hope to achieve for Feeding Matters and our internal team:
- Trauma Informed, Healing Organization: While I do believe most of our programs are trauma-informed, we are never done learning and need to be constantly evolving and growing. I want to ensure that we are trauma informed in all of our programming and continue to grow as a healing organization aware of trauma and its impact to an individual and a system.
- More Content: We are working to bring you more educational and awareness content that supports the needs of parents, professionals, and caregivers. This includes webinars, blogs, articles, and more.
- A Greater Movement for PFD: As we continue to build awareness for pediatric feeding disorder, we are creating a movement to ensure children are identified early and have access to the support and treatment that they need. This year, that movement will get even stronger. To start, we will have the biggest PFD Awareness Month (May) yet!
- A united community: Often, Feeding Matters has served as a neutral place for all perspectives to exist and ideas to be shared and discussed. We aim to continue this effort and take great pride in this responsibility. But as the world of feeding continues to get more complex, this task becomes even more difficult. That is why we remain dedicated to listening to our community, working toward consensus, advancing research, and innovation in an ever-evolving field.
For myself, and what I hope to bring to my team, is to continue working on living and breathing our values daily. Our team values are collaboration, innovation, and inclusion. We work to grow each day as leaders serving our community so that we can achieve our vision of creating a world where children with PFD will thrive. To do this, we will ensure we always make time for and find power in the pause.
Happy to be back,
Jaclyn Pederson, MHI
Feeding Matters CEO
best practices within intensive care settings
Published by Erin Ross, PhD, CCC-SLP on Feb 14, 2023
Feeding begins at birth, and for many infants who are born preterm or with medical complications, feeding experiences happen within intensive care units. An international consensus committee has published standards and competencies for best practices within intensive care settings. Currently there are six general areas that are covered by these recommended practices. One is for feeding, eating and nutrition delivery. This is a great resource for people working within intensive care settings with infants – whether in neonatal or cardiac units or other specialty units. There are eleven standards within this area, with multiple competencies within each. Rationale for each standard, along with the body of evidence used to create the standard, are freely accessible. There are also checklists available to measure your current practice.
A common question is “but how do I do this?” Feeding is multi-dimensional and making any changes to current practices can be very overwhelming. Recently a “put into practice” conference produced a White Paper that is also available. I am including this resource for you here.
If you ever wanted to compare where you are (personally or within your unit) with what is possible, this is the place for you. Check it out – and keep coming back. It is currently in the process of being updated with new research and the standards are being evaluated. In fact – you have the opportunity to provide feedback for this process as well – all on the website here.
Does your child need a feeding tube? Here’s what you need to know
Published by Dana Williams, MD on Feb 09, 2023
A pediatric gastroenterologist debunks 4 myths about G-tubes and normalizes a feeding tube for those kids who need it.
Dana Williams, MD, Medical Director, Feeding Disorders Multidisciplinary program; Medical Director, Aerodigestive Digestive Program at Phoenix Children’s Hospital
When I see patients who are likely candidates for a G-tube, I can already imagine their lives at home. Days revolve around feedings. Every hour, on the hour, the parents attempt to get an ounce of formula or breastmilk into their little one’s belly. The parents are exhausted, and so are their children. Everyone feels like a failure.
In spite of the struggle, no one wants to bring up a G-tube. So, I do.
As director of a team of physicians, therapists and dietitians at Phoenix Children’s Hospital, I see hundreds of children each year with pediatric feeding disorder (PFD). For many of them whose medical complexities make oral eating a struggle, a gastrostomy (G) tube is a key medical intervention. G-tubes help these children develop and thrive, while preventing malnutrition and dehydration.
A G-tube is surgically inserted through the abdominal wall and into the stomach. It’s held in place by an internal device called a balloon. The tube can be used to deliver liquids, purees and medication.
This sounds scarier than it is.
Like any surgical medical intervention, deciding to directly feed a child through a gastrointestinal tube inserted into their stomach is a big decision. For those children who are a good candidate for a G-tube, the benefits of a feeding tube and the risks of not getting one far outweigh any risks.
There are many benefits of getting a G-tube. Some of those include:
- Improved nutrition and hydration: A G-tube provides direct access to the stomach for nutrition, fluids and medication, ensuring children get the nutrition they need.
- Reduced risk of aspiration: A G-tube can reduce the risk of food and liquid entering the lungs, a common problem for children with pediatric feeding disorders.
- Increased independence: Children with G-tubes can engage in activities they enjoy without the stress of constantly worrying about eating or drinking.
- Better sleep: A G-tube can provide continuous nutrition and hydration overnight, leading to better sleep and improved overall health.
- Eased caregiver burden: Parents get relief from constantly trying to provide adequate nutrition and hydration.
- Improved weight gain and development: Children with a G-tube often see improved weight gain, leading to better overall health.
- Comfort: Removing the alternative temporary nasal tube can make it more comfortable for a child to eat. Depending on each child’s medical journey, they may be more likely to eat when they don’t have hardware in their noses.
Still, many parents who consider a G-tube for their children can feel like a failure. The truth is the opposite. Feeding isn’t something parents or doctors or anybody can control. If a child doesn’t want to eat, or they can’t eat, then there is nothing anyone can do to make them. Of course, this can change over time with multiple levels of support. But the parents of these children haven’t failed.
Debunking 4 major myths about G-tubes
Most of the time that parents express hesitation about the G-tube, it’s because of a fear of one or more of four common myths. Talking about the reality of what a G-tube will mean for a child and the family helps parents make an informed decision.
Myth #1: A G-tube is permanent
A G-tube is a temporary solution to supplement or replace oral eating and drinking. I have countless patients living healthy lives after the removal of their G-tubes who will attest to that fact.
How long each patient needs a G-tube and whether they’re receiving all or some nutrition through the tube depends on each child’s needs. When a family is deciding about G-tube surgery, we discuss the anticipated use. In many cases, a G-tube can supplement – rather than replace – oral eating.
We also discuss the process for removing a G-tube for those kids who can eat fully orally one day.
Myth #2: Infection is common with a G-tube
Infections do occur for some people with a G-tube, but they’re not common. Some children are more sensitive, and there is no way to predict that. For most people, the channel for the G-tube heals nicely. Similarly to an ear piercing, it becomes epithelialized so that the tube can comfortably pass through the area. We monitor the insertion hole and mitigate the risk of infection by teaching parents and older children how to clean the area.
Myth #3: Kids can’t eat regular food with a G-tube
The majority of kids with G-tubes in our practice also eat orally. This varies for each child, depending on their medical issues. Most children I see even take pleasure in oral food. The G-tube is an important tool that gives children time to develop the ability to eat on their own terms.
Myth #4: A G-tube means kids won’t be motivated to eat orally
While there is some truth to this myth, it’s not entirely accurate. For many kids with PFD, it doesn’t take much for them to feel full. This is why we individualize treatment so that each child receives the amount they need. Children can still learn hunger cues and get exposed to meal time routines.
What is a sign of success for a child with a feeding tube?
Just as the treatment plan for every child with a feeding tube is different, success also varies. To me, the main signifier of success is when the patient and family are in close conversation with their doctor. Every journey is different, but having a team of the right medical provider matters. It’s not up to parents to walk this journey alone.
Beyond that, any step forward for a child is success. Some examples are as follows:
- A child who aspirates due to a medical condition safely learns to taste some food and enjoy family meals.
- A child slowly learns to eat orally through feeding therapy post heart surgery.
- A child who outgrows some allergies and tries more foods.
- A young adult who goes off to college even though he still only eats seven foods.
Parents of children with pediatric feeding disorder no doubt feel responsible for ensuring their children get the nutrition they need to grow and develop. For those children who are good candidates for a feeding tube, a G-tube is an important tool to help them along their feeding journey.
Hadyn Van der Molen has had a G-tube since he was nine months old. His mom, Heidi, program manager for Feeding Matters, recalls feeding Hadyn around the clock with a 2-oz. bottle. The only time he’d ingest it was when he was sleeping.
Mighty Milk or Diet Diversity?
Published by Raquel Durban, MS, RD, LDN on Feb 01, 2023
This blog post is published as part of a paid partnership between Feeding Matters and Reckitt Mead Johnson. Learn more about our corporate partnership program and ethical standards for collaboration.
Food shopping has evolved over the years. Long gone are the days of only cow’s milk or soy milk. Now it seems there is milk made from every type of plant! You will likely find yourself questioning, “which is best for me?” or “is there a better option to use as a replacement in cooking or baking?”.
The range of alternative milk beverages includes almond, cashew, soy, coconut, pea, oat, walnut, flax, hemp, macadamia, and rice – as well as what seems like a new option each week!
The nutrients are just as varied as the plants from which they are derived. The question is, “Which milk is best for ME?” because your nutrition needs, and taste preferences will differ from another person’s.
The nutrients in cow’s milk are protein, calcium, vitamin A, vitamin D, vitamin B12, riboflavin, niacin, phosphorous, pantothenic acid, zinc, selenium, iodine, and potassium.
Avoiding cow’s milk does not mean you have to miss out on its great nutrition! Other sources of these nutrients include:
- Protein: meats, beans, some plant-based milk.
- Vitamin A: beef liver, sweet potato, carrots, cantaloupe, red bell peppers, fortified cereals, mango, spinach.
- Vitamin b12: beef liver, clams, tuna, fortified nutritional yeast, salmon, beef.
- Riboflavin: beef liver, fortified breakfast cereals, beef, clams, almonds.
- Niacin: beef liver, chicken or turkey breast, prepared marinara sauce, salmon, tuna, pork, beef, rice, fortified breakfast cereals, russet potato.
- Phosphorus: salmon, scallops, chicken breast, lentils, beef, cashews, russet potato, kidney beans, brown rice, peas, oats, egg.
- Pantothenic acid: beef liver, fortified breakfast cereal, shitake mushrooms, sunflower seeds, chicken breast, tuna, avocado.
- Zinc: oysters, beef, crab, lobster, pork, baked beans, fortified breakfast cereals, dark meat chicken, pumpkin seeds, cashews, chickpeas.
- Selenium: Brazil nuts, tuna, halibut, sardine, pork, shrimp, enriched pasta, beef, turkey, chicken, egg, and brown rice.
- Iodine: most enriched grains and iodized salt.
- Potassium: apricot, lentils, squash, prunes, raisins, potato, kidney beans, orange juice, soy, banana, chicken breast, salmon.
Here are some tips when shopping for your new favorite:
- Choose unsweetened varieties with little to no added sugar. Those labeled “original” often contain large amounts of added sugar that add up quickly.
- If using plant-based milk to replace cow’s milk, choose one fortified with calcium and vitamin D.
- Children ages 1-2 should receive full-fat versions with a nutrient content similar to whole cow’s milk. Adults, however, can consider low-fat and fat-free versions.
Raquel Durban, MS, RD, LDN is a registered dietitian specializing in the dietary management of families with food allergies. She received her master of science degree in nutrition from the University of Maryland and completed a nutrition internship at the University of North Carolina at Greensboro. As a recognized authority on the dietary and nutritional management of food allergies, she is a frequently invited speaker at allergy and immunology conferences and has the pleasurer of precepting dietetic interns. Ms. Durban has contributed her expertise to peer-reviewed publications and continuing education programs.
Ms. Durban is a steering committee member and cochairs the internship program of the International Network of Dietitians and Nutritionists in Allergy and serves on the Medical Advisory Board of the International Association or Food Protein Enterocolitis. She plays and active role in the American Academy of Allergy, Asthma and Immunology (AAAAI) and the American College of Allergy, Asthma and Immunology (ACAAI). She serves on the organizations’ numerous committees, collaborating with other health care professionals and patient advocacy groups to improve quality of life and advance understanding of families living with the challenges of food allergies.
From pediatric weight gains and losses to restricted diets for food allergy and disease management, she does not believe there is a one-size-fits-all answer for success. She will work to find the best balance of meeting nutritional needs with lifestyle demands and ensure collaboration with other members of the care team.