Jalenna Francois, Author at Feeding Matters

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Breastfeeding for babies in the NICU and beyond

Published by Joy Browne, PhD, PCNS, IMH-E on Sep 13, 2023

A comprehensive guide for navigating baby feeding for infants in the NICU

By Joy Browne, PhD, PCNS, IMH-E Clinical Professor of Pediatrics at the University of Colorado School of Medicine

Most expecting parents have the best intentions to breastfeed new babies. The science is clear that breast milk has the most benefits for a baby’s health even beyond the infant years. Mothers, too, reap emotional, mental and physical benefits from breastfeeding. But breastfeeding can be harder than it seems.

The challenges are even greater for parents with babies in the neonatal intensive care unit (NICU) for any number of reasons, such as medical complications, a mother’s delayed milk production or a mother’s lack of access to the baby.

That’s not to say breastfeeding babies in the NICU is impossible. With support, it certainly can be possible. And even those babies who can’t breastfeed immediately benefit from colostrum expressed at birth and skin-to-skin contact that lays a foundation for breastfeeding.

Can I breastfeed if my baby is in the NICU?

The journey of nurturing your newborn is more complex when your baby requires specialized care. One common concern is whether you can breastfeed a baby in the NICU. The answer is a resounding yes.

Breastfeeding has many benefits, especially for premature or medically fragile infants. NICUs will often actively encourage and support breastfeeding, recognizing its vital role in promoting bonding, immune system development and overall growth. While it might require extra patience and support from both you and the NICU staff, remember that you are an essential part of your baby’s care team. Your commitment to breastfeeding can provide comfort, nourishment and a sense of familiarity to your baby during this critical time.

Benefits of breastfeeding in the NICU

A mother’s breastmilk is specially designed to meet their baby’s unique nutritional needs, whether they begin their lives in the NICU or typically develop and are born at term. Babies in the NICU, especially, benefit from breastmilk for their health and development. A study in Nature.com shows, “…early human milk feeding is associated with a decrease in mortality and morbidity in the Neonatal Intensive Care Unit (NICU), decreased rates of illness and rehospitalization in the first year of life and improved neurodevelopmental outcomes.”

We also know that a mother’s colostrum is a powerful protector. Many nurseries will ask mothers to express colostrum to be used for oral care and first tastes while in the NICU.

Besides breastmilk’s nutritional benefits, breastfeeding also may facilitate bonding between mother and baby, reduce a mother’s stress levels, and decrease the risk of postpartum depression.

Is bottle feeding easier than breastfeeding?

It’s commonly misunderstood that breastfeeding is harder for babies than bottle feeding. Instead, studies show in many instances that breastfeeding is easier than bottles.

With bottle feeding, babies may work hard to extract milk from the nipple, expending extra effort to consume their required nourishment.

With breastfeeding, babies can grasp, latch and regulate milk flow according to their comfort and pace. They control how much they consume and how to coordinate their sucking with breathing.

Unlike some instances of hurried bottle feeding that might involve manipulating the nipple to facilitate milk intake, breastfeeding respects the baby’s innate rhythm of sucking, breathing and swallowing.

Why skin-to-skin contact matters for babies and new moms

One of the most important benefits of early breastfeeding is skin-to-skin contact. It’s an intimate and powerful connection a mother will have with a baby. Skin-to-skin contact creates physiologic organization of both the baby’s and the mother’s bodies.

Following are some ways new babies and mothers benefit from skin-to-skin contact:

The mother’s body supports the baby’s temperature regulation. Once the fetus leaves its temperature-controlled environment of the uterus, the mother’s physiology heats up to ensure the baby is warm enough.

The mother’s breathing helps to regulate the baby’s breathing.

The mother secretes oxytocin, also called “the love hormone,” when the baby is nearby, supporting attachment as well as social and emotional development.

Even babies who aren’t breastfeeding can benefit from skin-to-skin interaction. In the NICU, younger and more critically ill babies are often transferred to their mother’s bodies so that the baby benefits from the mother’s ability to regulate their physiology. Skin-to-skin contact is now becoming a more standardized procedure for those babies who are stable enough to be off their mechanical support systems.

Continuing your breastfeeding journey beyond the NICU

Just because you know the benefits of breastfeeding doesn’t mean it’s easy. Having a baby in intensive care is extremely stressful – often coming after a stressful pregnancy, labor or delivery. The stress of these circumstances could interfere with successful breastfeeding, so mothers who can’t breastfeed should never feel guilty. Even with the best intentions, there are variables new mothers have to manage to be successful at breastfeeding.

All mothers – especially those with babies in the NICU – need more support for breastfeeding from policies, NICU resources and community support.

Following are some breastfeeding resources available:

Hospitals usually have lactation consultants on staff for in-patient support and outpatient appointments

LaLeche League operates in most communities.

The Affordable Care Act in 2011 made coverage of lactation consulting a federal requirement for mothers from the prenatal period through weaning. This includes the cost of breast pumps. If your health plan fails to provide coverage, the National Women’s Law Center has a script to use when calling a health plan.

SimpliFed provides a virtual baby feeding and breastfeeding support service, fully covered by health plans in all 50 states.

Continuing breastfeeding at home after discharge from the NICU

Babies in the NICU typically eat well at discharge but may have eating difficulties around two to four months. This is a period where babies’ brains are reorganizing, which leads to a change in the way they eat. It’s essential that babies get the most positive feeding experiences at this stage.

Researchers have found that by three months, babies’ brains are about 65 percent the size they’ll be in adulthood, making the period around and right after a time of huge brain growth and organization of neurons. Any unused neurons are shed. This is why early experiences impact brain organization, and lay the foundation for all behavior – including eating.

Professionals who support families after NICU discharge need more information about attending to the eating needs of these babies and their development. Educational programs about the science behind supporting babies’ transitions into their homes are essential for early intervention providers.

By understanding the benefits of breastfeeding in the NICU and beyond, parents can make informed choices that support their baby’s health journey. It’s up to everyone who supports families with new babies to make caring for them easier.

Joy Browne, PhD teaches multi-disciplines in areas of development from newborn to very young infancy, especially for babies who start their lives in intensive care. Her research has helped to develop standards of evidence-based care for infant and family centered developmental care.

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On the threshold of a new school year…

CEO Updates , School Tips

Published by Jaclyn Pederson, MHI on Aug 25, 2023

Dear Friends of Feeding Matters,

If you are one of the many people embracing the return of routines, packing lunches, sports and activities, you’ve been on my mind. I am wishing you a smooth transition from lazy summer days to busy homework nights. At Feeding Matters, we are acutely aware that this time of year can bring a mix of excitement and apprehension.

Our recent consensus endeavor, a summit with leaders in the PFD and ARFID communities, also produced a mix of enthusiasm and anticipation, underscores what is core to our mission. We believe in the power of consensus and the value of uniting various perspectives to focus on what children need. Reflecting on our recent Consensus Summit in partnership with Emory University and Children’s Healthcare of Atlanta, I was reminded of the magic of collaboration. This gathering allowed Feeding Matters to dive into the challenges and solutions related to PFD and ARFID diagnoses. The collective effort of this group is propelling us toward a brighter future, and we intend to share these results with our wider community soon.

The lessons that we learned from this consensus serve as key principles that resonate within our team but that I also think might benefit us all:

Embracing core values: Where there is disagreement, values aren’t aligned. By bringing individuals to the table, united in their dedication to improve access to care for children and families, we found pathways to alignment.

Words matter: The meanings, intentions, and assumptions tied to words often vary. As we work to provide clarity within our field, we always have to ensure that we are speaking a shared language.

Continuous learning: A shared commitment to always do better invites us to approach each day with open minds, ready to absorb insights from one another.

Challenging assumptions: Assumptions can easily take root regarding various fields, disciplines, and individuals. But only by actively questioning these assumptions can we begin to find common ground and forge meaningful connections.

While these principles have allowed us to learn and grow, they also extend to our full community.

As we stand on the threshold of a new schoolyear, we approach it with a shared commitment to collaboration and growth. Thank you for being an essential part of our community. Together, we can transform challenges into triumphs and nurture a more promising future for all children with PFD, their families, and the professionals who treat them.

In gratitude,

Jaclyn Pederson, MHI
CEO, Feeding Matters

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When ‘Expert’ Advice Is Unhelpful: A Guide to Avoiding Misleading Social Media Advice on PFD

Digital information , Healthcare Insights

Published by Feeding Matters on Jul 17, 2023

The pitfalls of unhelpful and misleading social media advice for clinicians and caregivers and how to avoid them

Whether you’re a clinician or a caregiver, unhelpful and inaccurate content is a common pitfall for anyone following feeding therapy accounts on social media. Here’s an example that speech therapist Bri Miluk, MS, MS, CCC-SLP, CLC, owner of Pediatric Feeding Therapy, sees often.

A therapist with a few years of experience shares a Reel highlighting the “dangers” of using a sippy cup. With a flashy video and a viral song, the account owner warns the audience of all the negative ways a sippy cup can affect speech, feeding, swallowing and sleep. Then, instead of sippy cups, the post recommends a special straw or open cup. The author shares a link to where you can buy it and the hashtag “#ad” as well.

Not only is the information, at best, misleading, and, at worst, entirely inaccurate, but it also violates Federal Trade Commision (FTC) rules for advertising.

Miluk, who is pursuing a PhD in communication and information sciences through the University of Alabama, explains, “This kind of content uses fear-mongering to convince people to avoid something based on baseless claims.” Pointing out that there’s no evidence to show that a child using a sippy cup is going to have sleep, airway, feeding or speech difficulties, she goes on to say, “A sippy cup uses similar oral motor patterns as sucking on a pacifier, thumb or bottle, but we know that frequency and duration matter. A child doesn’t have a sippy cup in their mouth all day long.”

Social media is a powerful tool for education and community among caregivers and clinicians alike. But the onus is on the user to ensure the information obtained there is accurate and helpful.

Healthcare misinformation mixed with fear-mongering on social media makes a recipe for disaster

Richard Noel, MD, a pediatric gastroenterologist at Duke Health, has treated hundreds of patients with pediatric feeding disorder (PFD) and other pediatric GI issues. One problem he hears from caregivers gathering PFD information from social media is that content typically features only one perspective. “On social media, you only see the numerator but never see the denominator. You’re not told about when an approach fails. They always generally talk about their successes.”

When information is shared as a general recommendation, it can be particularly challenging. “Pediatric feeding disorder can have many different forms and severities. What works for one person may not work for another,” says Dr. Noel.

Knowing that social media can be full of inaccurate information and even fear-mongering has led clinicians like Miluk to spend time creating social media educational content. Miluk has built up an audience of over 24K on Instagram with content to educate clinicians about feeding therapy. Caregivers also follow her for tips, and Miluk is especially driven to dispel myths for both audiences.

Here’s a great example of how Miluk does this:
https://www.instagram.com/p/CuQO6cCOd-S/
Clinicians need to gauge content on misleading social media advice

Even clinicians and students pursuing a therapy degree can fall prey to misinformation on social media. Miluk started sharing social media content, primarily on Instagram, after seeing other speech therapists promote inaccurate or misleading content. She started in 2020 by sharing evidence-based content on pediatric feeding. That evolved to trying to support clinicians and caregivers to better understand dark marketing and how misinformation is shared online. According to Business Review at Berkeley, dark marketing is highly targeted advertising that “causes the audience to think about the product more subtly.”

TikTok posts and Instagram Reels from influencers promoting a product take dark marketing to a new level. “Some of these sources are selling a method or a booklet, and you’re getting advertising disguised as a documentary,” warns Dr. Noel.

Because dark marketing is so pervasive on social media, Miluk teaches her students in university courses and clinicians online how to spot it.

“The better understanding we have of how to be informed consumers ultimately leads to better patient care,” she says.

Judging the accuracy of information on social media

When using social media to view healthcare information, one tool Miluk recommends considering is the aptly-named CRAAP test.

CRAAP stands for currency, relevancy, authority, accuracy and purpose. Miluk explains each letter of the acronym as follows:

Currency: Is the information timely or is it outdated?

Relevancy: Is the information relevant to you?

Authority: Who is the source of the information?

Accuracy: Is this information supported by scientific evidence?

Purpose: What is the reason this information exists? Is it to inform? Is it to sell? Is it to teach? Is it to entertain? Is it to persuade?

Best practices for clinicians using social media for pediatric feeding disorder information

Miluk and Dr. Noel recommend the following ways to access informative PFD content on social media without being misled.
Just because it’s a common refrain doesn’t make it gospel
One of Miluk’s favorite podcasts, Duped by Dr. Michelle Mazur and Maggie Patterson, has a quote she repeats often: Just because you hear something frequently doesn’t mean it’s true.

“Because of cognitive biases, when we see something repeatedly, it’s natural for our brains to believe it to be true. In reality, that doesn’t mean truthfulness,” says Miluk.
Make your intentions clear
For clinicians who promote products on social media, you need to disclose any affiliations in the post. This can’t be simply including #ad. You must clearly state that you may receive a commission on qualifying purchases. “It’s something that I wish would be normalized. An affiliation is not something to be embarrassed about. People have a right to know if you have a potential bias for something when you’re earning a profit, no matter how small,” says Miluk.

Clear disclosure on posts is required by social media channels themselves, as well as the Federal Trade Commission.
Unfollow toxic accounts
For those clinicians and caregivers who actively share on social media, one of the biggest challenges is the ability to hide behind a screen. This can create divisiveness and even be shame-inducing. “If you put something on a public forum, you should expect public replies and even public criticism, but that doesn’t mean we should be disrespectful,” Miluk says.

Miluk recommends treating your social media like your digital home. “If I wouldn’t allow someone to walk through my door and talk to me like that. Then they’re not welcome here, either.”

Advice for parents and caregivers

Caregivers should be wary of social media before adopting a new method or following advice to support children with PFD. Dr. Noel recommends the following tips:
Use your therapy provider as a sounding board
When you find new health information, bring it to your therapy provider before investing time or money into a specific method, book or video series. “You see something new on social media that looks amazing and promises to help 10 out of 10 kids with a feeding disorder. If you run it by your therapy provider, they might point out it’s not new. It works for some, but it doesn’t work for all. That’s how you get better, more realistic information for your child,” he says.
Seek information and support from advocacy organizations
Dr. Noel is a fan of and a critical professional leader for advocacy organizations like Feeding Matters. He says, as a physician, there are many questions he can’t answer because he doesn’t live with the disorder his patients’ families confront every day. Having a peer referral source is crucial. “These advocacy organizations are incredibly valuable to provide for patients’ needs that are way beyond what I do in medicine,” he says.

Technology today is moving faster than your finger can drag down to refresh. Access to this information overload is only as beneficial as the receiver’s level of skepticism. Miluk’s most important advice for using social media to find support for PFD or any other health issue is to slow down. “You have to slow down your thinking and be willing to appraise the information before feeding education on social media can be effective.”
Click here to read a blog by Miluk on why she recommends clinicians attend Feeding Matter’s annual PFD conference.

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Advancing Feeding Matters: A Report from Dublin and London

News & Events

Published by Jaclyn Pederson, MHI on Jul 13, 2023

Greetings, Feeding Matters Community! It’s with great pleasure that I bring you an exciting update on the summer awareness travels of the Feeding Matters team. As Feeding Matters’ CEO, I had the privilege of attending the International Family Nurses Conference alongside our Program Manager, Heidi Van der Molen. Our mission to raise awareness and enhance support for families facing pediatric feeding disorder (PFD) took center stage as we engaged with esteemed professionals, discussed key concerns, and explored opportunities for collaboration.

Hayley Estrem, PhD, RN; Heidi Van der Molen; Jaclyn Pederson, MHI at the International Family Nurses Conference

Feeding Matters’ Power of Two: Empowering Parents, Transforming Lives
During the International Family Nurses Conference in Dublin, Heidi and I had the honor of presenting on Feeding Matters’ “Power of Two” program. We shed light on the incredible impact of parent-to-parent support in the PFD community, emphasizing the significant role it plays in helping families navigate their feeding concerns. By sharing personal stories, challenges, and triumphs, we showcased the power of connections, empathy, and knowledge exchange in transforming lives. It was truly inspiring to witness the positive response and engagement from healthcare professionals and fellow attendees. If you are interested in sharing this program with your families or participating as a family member yourself, please visit our family support roadmap to learn more.

Heidi Van der Molen (left) and Jaclyn Pederson (right) presented at the International Family Nurses Conference in Dublin

Addressing Top Feeding Concerns: A Pathway to Support
As part of our presentation in Dublin, we highlighted the “top feeding concerns” that parents often encounter when they find Feeding Matters. By understanding these concerns, we aimed to equip healthcare providers and families with valuable insights into common challenges faced by children with PFD and the struggles that families often face as they work to ensure their children are growing. By sharing our expertise, resources, and evidence-based strategies, we are committed to nurturing a supportive environment that fosters positive outcomes for children with PFD.

Leading the Way with Research and Tools
Feeding Matters’ dedication to research and the development of practical tools was also showcased through our poster presentations at the conference. One poster focused on our comprehensive Feeding Matters family guide, a valuable resource for families seeking guidance on managing PFD. The family guide, available here, is a great tool to any parent on the PFD journey. The second poster highlighted our Infant and Child Feeding Questionnaire and the research to identify 6 questions to facilitate early identification of PFD. These initiatives demonstrate our commitment to bridging the gap between research and practice, ensuring that families receive the support they need.

Heidi Van der Molen with Feeding Matters poster on the Family Guide to PFD

Collaboration and Advocacy on an International Scale
In addition to the informative sessions, we had the opportunity to connect with various partners, potential collaborators, and researchers from around the world. Engaging in insightful discussions, we explored ways to advance the field of pediatric feeding disorder and promote early intervention strategies. Notably, I had a productive meeting with Natalie Morris, the Founder and CEO of the Feeding Trust in London. Our discussion focused on the growing challenges related to Avoidant/Restrictive Food Intake Disorder (ARFID) and PFD in the UK. Together, we aim to enhance awareness, understanding, and pathways for assessment and treatment in the medical professional community and families alike.

Natalie Morris, CEO & Founder of The Feeding Trust (left) and Jaclyn Pederson, CEO of Feeding Matters (right)

Looking Ahead: Our Commitment to Progress
As we reflect on the events in Dublin and London, it’s evident that Feeding Matters is playing a pivotal role in raising awareness and fostering change within the PFD community. But we know that we are not the only ones. We have been excited and grateful as we’ve seen a huge increase in presentations about PFD at major conferences across the country and world. Together, we can continue making strides towards a future where every child has the opportunity to thrive.

Feeding Matters’ journey to Dublin and London has been a great chance to talk about PFD, build partnerships, and focus on collaboration and research. Through our impactful presentations, informative posters, and meaningful conversations, we have expanded our network, shared our expertise, and advocated for improved support systems for families facing pediatric feeding disorder. As we move forward, we are more determined than ever to drive positive change, empower parents, and advance the field of PFD so that all children with PFD will thrive.

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Pediatric Feeding Disorder to ARFID: A Young Child’s Journey

Infant Growth , ARFID , Feeding Tubes , Family Stories

Published by Feeding Matters on Jun 26, 2023

Not long after Alexandra Marcy’s third child was born, she knew something was wrong with her eating. From the start, her daughter, Emerson, wasn’t latching properly. “I was told at the hospital that her latching would come naturally. We tried for a few days, and I knew it wasn’t normal,” she says.

It wasn’t long before Emerson’s diapers were dry.

A doula friend suggested Emerson might have a tongue tie, making it hard for her to latch. Not only did she indeed have a tongue tie, but she also had a lip tie and a buccal tie – a cheek tie that results from an abnormally tight frenum. Emerson underwent a laser procedure on all three, and Alexandra started using a nipple shield while breastfeeding.

Even then, says Alexandra, “She’d get a little bit of milk but never enough. Any time I tried to nurse her, she’d scream.”

Those early feedings began a four-year feeding journey that’s still developing today. What began as a medical feeding issue then is today a psychological issue. The Marcy family continues to navigate the uncertain path between pediatric feeding disorder (PFD) and Avoidant Restrictive Food Intake Disorder (ARFID).

Click here to read about PFD and ARFID and how the two diagnoses can overlap.

See here why misdiagnosing PFD and ARFID can do more harm than good.

Following is their story.

One young child’s journey from PFD to ARFID

Alexandra gave up on breastfeeding early and instead pumped milk for Emerson. The baby never took more than an ounce at a time. Even then, Emerson would spill milk out of her mouth and gag. Like many parents of children with PFD, Alexandra spent most of her time around the clock pumping and feeding her daughter.

Emerson also sounded congested all the time. Her pediatrician assured Alexandra this was normal.

Alexandra wasn’t convinced, and at three months, baby Emerson was breathing strangely and seemed limp. It was RSV season, but a swab and an X-ray seemed fine. But Emerson hadn’t gained weight since her previous pediatric appointment. When Alexandra returned a week later for a weigh-in, the baby lost a few ounces. The pediatrician recommended Alexandra supplement with formula. He suggested her breast milk wasn’t fatty enough. Emerson lost more weight even with formula.

They ended up at Phoenix Children’s Hospital (PCH) when Emerson was four months old. “I saw so many doctors, who all thought her breathing and eating will be fine. We were there for over a week without any answers,” says Alexandra.

It wasn’t until Alexandra, who worked in a therapy clinic, managed to connect with a feeding therapist from her team that she got some answers. She looked over Emerson’s original X-ray of her lungs from when Alexandra suspected she had RSV and saw shadows in the image. A second X-ray showed the shadowing had gotten worse since then. This was a sign the baby was aspirating.

The family turned to a gastrointestinal doctor for answers. Emerson was diagnosed with allergies and started an animos-based formula, which helped. “Still, though, she was a terrible eater. It was hard to get 4-oz. into her,” says Alexandra.

It seemed like any time Emerson would make some feeding progress with her feeding therapist, she would get an upper respiratory infection or rotavirus that would set her back.

Emerson with NG tube

Emerson got an NG tube to build up her strength. The NG tube helped the baby gain weight, but Alexandra still remembers it as traumatic. “Any time it came out, I’d have to have my eight-year-old hold her down while I put it back in her. It felt crazy and sad.”
Emerson with her sister

Eventually, Emerson was diagnosed with:

Type 2 laryngeal cleft: An abnormal opening between her larynx and the esophagus that allowed food to enter her lungs

Tracheobronchomalacia: Her weak tracheal or bronchial tubes would collapse any time she ate or cried.

Dysphagia

“Finally, we had answers, but no way to fix it,” says Alexandra.

Emerson with G-Tube

At eight months, Emerson transitioned to a G-tube as a long-term feeding solution. “This was so much better because I could see her beautiful face. She wasn’t gagging and throwing up,” says Alexandra.

The G-tube even helped Emerson overcome some food aversions to try solids. Alexandra added her to the months-long waiting list to get into the feeding program at PCH.

Thanks to the family’s hard work, Emerson progressed and eventually got into the feeding program. But at age three, she started to regress again. She stopped eating most of what her parents offered, accepting only four foods.

Even after three weeks in an intensive feeding therapy program at PCH, Emerson wasn’t progressing. At that point, all her medical issues had been addressed and resolved.

The hospital team suggested Emerson see a psychologist, who thought the three-year-old could have ARFID. Eventually, Emerson was diagnosed with ARFID and obsessive-compulsive disorder (OCD). She was young for both psychological diagnoses, but a child psychologist and a child psychiatrist agreed.

Emerson was treated with EMDR therapy to help her reprocess the medical trauma she experienced as a baby and toddler. “Any time she eats, she doesn’t want to feel pain, so this makes her restrictive and gives her intrusive OCD thoughts,” says Alexandra.

A psychiatrist who has worked with many children with PFD and ARFID prescribed medication, helping Emerson be more open to new foods and eat more. Things have gotten easier, but still, says Alexandra, their journey isn’t over. “She just doesn’t care about food. She doesn’t act hungry, and I have to remind her to eat.”

Emerson and her family

Alexandra hopes sharing her family’s story will help others navigate a similar path.

For more information, visit Feeding Matters’ resource page: PFD and ARFID. If you are a parent needing support, check out our family support resources
.

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Bravely adventuring out with PFD this summer

Travel Tips , Family Stories , Uncategorized

Published by Feeding Matters on Jun 23, 2023

Parents offer 7 tips for navigating summer travel with pediatric feeding disorder

Summer travel with children is always an adventure. Having a child with pediatric feeding disorder (PFD) makes traveling for leisure or medical reasons more complicated. Planning and adhering to advice from seasoned families of children with PFD can help smooth out any bumps in the road.
Julie Boos of Kansas City navigated PFD with her son, Landon, for the first eight years of his life. Landon suffered from respiratory syncytial virus (RSV) at eight days old and underwent respiratory failure. That led to dysphagia and other eating and breathing issues.

The family’s lives revolved around physician and therapy visits. Just visiting the hospital took foresight, perfect timing and a car bottle warmer.

But, the Boos were determined to visit Disney World. They had planned to go when their older daughter was three, but they delayed the trip when Julie was pregnant and told not to travel. Their daughter was already spending most of her time outside school tagging along on medical visits, so the trip felt essential.

They delayed the adventure until Landon was just under three and still qualified for a free ticket. Julie planned every detail down to the minute. She requested a free refrigerator in the room, citing medical issues. When they arrived, she ordered groceries of Landon’s few foods to the room. And she studied the Disney restaurant menus to find those who might serve elbow pasta with butter. She mapped out the day so they’d end up at the right restaurants at the right time.

Anyone with a child who has PFD can relate to the challenges the Boos faced, along with the sheer will to overcome it to offer their kids an experience others consider “normal.”

Tips to ease traveling with PFD

We asked parents in our Feeding Matters Power of Two Facebook group for their tips on traveling with PFD. Whether it’s a day’s outing at the pool or a week at Disney, here are seven tips to make your family fun this summer easier.

Pack feeding essentials in your carry-on
If your child has a g-tube, specific bottles or any feeding supplies, bring them in your carry-on and have a backup. Andrea Wallace says she always travels with a backup button and extra supplies for her child’s feeding tube. That way, she’s always prepared when flying if the checked bags get lost or delayed.

Use a pump backpack
Having a pump backpack has been essential for Jackie Moore’s daughter. They use it for night feeds, and it also makes traveling easier. The bag has space for ice packs to keep the formula cold for multiple feedings. Moore suggests this Feeding tube backpack.

Try a travel booster diaper bag
With so many feeding supplies in addition to all the other kids’ travel needs, any way to consolidate travel gear makes trips easier. Moore swapped out her diaper bag with a travel booster that has storage in it. “My daughter is very particular about what she will sit in because of sensory issues, and she loves this booster. We downsized much of the stuff in her diaper bag and attached a cold lunch bag to the strap,” she says. This is the travel booster diaper bag Moore uses.

Get a travel mini fridge
An AC and DC-powered mini fridge for travel can be a lifesaver in the car, according to Devon Steele. It guarantees you can refrigerate formula and purees. It has dual power sources that can connect to your car or to a wall outlet. “Just make sure your hotels have elevators, or you have help getting it upstairs,” she says. View the BougeRV car fridge recommended by Steele.

Lean on food deliveries or family and friends
Most kids are tired and cranky when they finally arrive at a travel destination. Having food delivered beforehand or asking your hosts to get your child’s favorite foods can make for an easier start to the vacation, says Erin Avilez.

Document what works
With so much to plan, it’s easy to forget something on your next trip. Julie Boos recommends writing down what worked (and what didn’t). You can even have a travel bag prepared that you can use for every trip. This is especially helpful for those who have to travel for frequent medical trips.

Have a backup plan
Despite all her advanced planning, Julie Boos and family got stuck in the Atlanta airport when their plane was canceled. If you know your child won’t eat anything from a food court, make sure you have food prepared just in case you don’t make it home when you expect.

Happy travels!
.
Have tips of your own? We’d love to hear from you. Email programs@feedingmatters.org.

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PFD, ARFID or both?

ARFID

Published by Will Sharp, PhD on Jun 12, 2023

Developing common terminology for children with PFD and ARFID is key to improving diagnosis and treatment

By William Sharp, PhD is a behavioral psychologist and director at theChildren’s Multidisciplinary Feeding Program at Children’s Healthcare of Atlanta

Naming pediatric feeding disorder (PFD) as a diagnosis in the International Classification of Diseases (ICD) code in 2020 provided much-needed clarity for clinicians and parents alike.

For the first time, parents whose children faced feeding problems caused by medical and/or developmental conditions, such as premature birth or autism, could identify and discuss their struggle. Primary care physicians, often called upon to identify PFD, could use the diagnosis to facilitate referrals. Clinicians had an insurance billing code to use when providing care. When everyone shares a common language, finding solutions and improving outcomes becomes easier.

But confusion remains. Avoidant restrictive food intake disorder (ARFID) is also a relatively new psychiatric diagnosis, introduced in 2013 in the Diagnostic and Statistical Manual of Mental Disorders (DSM) 5 code. ARFID describes food restriction and avoidance that may occur in infancy and early childhood. It overlaps with PFD, which is confusing for families and clinicians. The question is, when is ARFID actually PFD? And do you treat ARFID differently if a child has a history of PFD?

Defining the differences and similarities between PFD and ARFID is the next step in clarifying both diagnoses and improving support for children who experience them.

Defining ARFID and PFD

Let’s break down the diagnoses, their similarities and differences.

ARFID is a mental health diagnosis describing children with feeding problems and related nutritional risk or deficiency without coincident body image problems, as seen in anorexia.

Children with ARFID have one or more of four symptoms:

Weight loss

Significant nutritional deficiency

Dependence on internal feeding or nutritional supplements

Significant interference with your day-to-day functioning

Pediatric feeding disorder (PFD) is impaired oral intake that is not age appropriate. It’s a multidisciplinary diagnosis that includes feeding dysfunction in any one or several of the four domains:

Medical

Nutrition

Feeding skill

Psychosocial

Sometimes children will have both ARFID and PFD. Other times, a child has one or the other.

ARFID treatment is a behavioral diagnosis and does not address medical, developmental or skill-based issues.

Knowing children’s full medical history regarding feeding is crucial to providing optimal care.

Defining the gray area between ARFID vs. PFD matters

Intensive, multidisciplinary pediatric feeding centers like at Children’s Healthcare of Atlanta are rare, with only approximately 16 comprehensive clinics in the U.S. Altogether, they provide intensive intervention for about 700 kids yearly. Conservative evaluations estimate that PFD affects more than 1 in 37 children under five in the U.S. annually.

Instead of accessing support at feeding centers, children with feeding issues may land on the doorsteps of eating disorder clinics. Sometimes these children have PFD that was never treated at a young age.

Here’s an example of a typical child in our feeding clinic:

A child was born prematurely and required intubated to aid with breathing. She also had poor motor skills and required a feeding tube to meet all her nutritional needs. She remained on the feeding tube throughout infancy due to concerns with aspiration and swallow safety. At this point, she was diagnosed with PFD.

Once medically cleared for oral feeding, a speech therapist worked with the child to introduce pureed food. However, she refused many foods, limiting the volume and variety of food she would eat. These behaviors worsened overtime. After two years of weekly feeding therapy, she was referred to a multidisciplinary feeding program, where she was diagnosed by a psychologist with ARFID.

Like the patient above, ARFID may begin not as psychological diagnosis. Instead, it’s a response to a medical complexity. A physical challenge became a behavioral challenge. Supporting this child and millions like her means addressing both. This also highlights the potential connection between PFD and ARFID, a connection that caregivers and clinicians may find confusing.

Coming together to improve care for children with PFD and ARFID

Ensuring the needs of children with PFD and ARFID are being met requires coming together as a community of multidisciplinary clinicians treating them.

As part of the Feeding Matters research task force, we conducted a national survey of 650 providers assessing and treating PFD. It’s the largest survey of its kind, and responses are key to identifying existing support and current needs. We expect to publish survey results this summer 2023.

Armed with that information, we can start to develop common terminology for PFD and ARFID. Together with Feeding Matters, our Feeding Clinic at Children’s Healthcare of Atlanta and Emory University will host a summit in August to begin this conversation.

One possible clarifying solution is to have subcategories of both diagnoses. Subtypes would root each diagnosis in a patient’s history. This would mean children fall into four categories:

PFD

ARFID

PFD with an ARFID subtype

ARFID with a PFD subtype

Understanding how ARFID and PFD are similar and different can improve the patient journey. Pediatricians will be better equipped to refer children to the right specialists, and parents will know what support is available.

William Sharp, PhD is a behavioral psychiatrist and director of Children’s Multidisciplinary Feeding Program at Children’s Healthcare of Atlanta. He’s a medical advisor to Feeding Matters and is helping shape the PFD and ARFID conversation.

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Shining a Light on Pediatric Feeding Disorder: Accomplishments in Awareness Month

PFD Awareness Month , News & Events

Published by Feeding Matters on May 23, 2023

As Pediatric Feeding Disorder Awareness Month comes to a close this May, it is essential to reflect on the accomplishments achieved during this significant month. This May we have aimed to raise awareness, promote understanding, and provide support for children and families affected by pediatric feeding disorder. In this blog post, we’ll highlight some of the notable accomplishments and milestones reached during this impactful awareness month.

1. Increased Public Awareness: Through a collaborative effort of healthcare professionals, organizations, and fundraising champions, this awareness month has succeeded in bringing attention to pediatric feeding disorder. Social media posts, new webinars, collaborations, and community events have helped spread the word, reaching a wider audience and generating conversations about this often-silent condition.

Governor Katie Hobbs (Arizona) presented the Arizona PFD awareness month proclamation to Feeding Matters.

Governor Jim Pillen (Nebraska) presented the Nebraska PFD awareness month proclamation to providers from Munroe-Meyer Institute.

16 states have proclaimed that May is PFD Awareness Month! Click here to see all of them. This is a record for us!

Our Instagram account has reached 136,000 accounts and has had a 98% increase in engaged accounts

We have hit 11.1K followers on Instagram

We have already raised $11,000 through Call it PFD: Feed the Cause and have 30 fundraising champions.

PFD presentations were made to individuals in Ohio, New Jersey, Southern California, and Arizona.

We hosted an exhibitor booth at the National Head Start Association conference where over 4000 people attended.

Jaclyn Pederson, CEO (left) and Jen Lambert (right) receive the PFD Awareness Month Proclamation from Arizona Governor Katie Hobbs (center)

2. Educations and Resources: One of the key accomplishments of Pediatric Feeding Disorder Awareness Month is the development and dissemination of educational materials and resources. We have collaborated with various organizations and healthcare professionals to create webinars, podcasts, and downloadable resources, ensuring that accurate and helpful information is readily available for our community.

The International Pediatric Feeding Disorder Conference continues to be offered on demand and has over 1,000 attendees.

Jaclyn Pederson and The Family Nutritionist did an Instagram live to talk about picky eating and when it may be something more.

Jaclyn Pederson and The Allergy Chef did an Instagram live.

Our team had a live conversation with leaders from our PFD Alliance on Facebook Live to talk about conference takeaways and future initiatives.

FUSS: Formula Use Should be Simple webinar sponsored by Reckitt/Mead Johnson Nutrition went live on our Learning Center for 1.00 AMA PRA Category 1 Credits.

Feeding Matters was a guest on First Bite podcast.

Governor Jim Pillen of Nebraska presenting the Nebraska PFD awareness month proclamation to providers from Munroe-Meyer Institute.

3. Support Networks: Pediatric Feeding Disorder Awareness Month has fostered the growth of support networks for families dealing with PFD. Our Power of Two program has grown and we have been able to support more families to provide a safe space for sharing experiences, seeking advice, and finding emotional support.

Feeding Matters has supported over 65 families this month through our Power of Two program, emails, and phone calls.

We have onboarded 5 new family coaches to support our families going through their journey with PFD.

Our family support resource page has been viewed over 550 times.

Pediatric Feeding Disorder Awareness Month has achieved significant milestones in raising awareness, providing education and resources, establishing support networks, and fostering collaboration. However, the work doesn’t end with this month. Let’s continue to build on these accomplishments, promote understanding, and strive for better outcomes for children and families affected by pediatric feeding disorder throughout the year.

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Comfort that comes from community: Parents find support for PFD from peers who experienced it

Family Stories

Published by Feeding Matters on May 19, 2023

Despite the joy that comes with parenting, it can also feel incredibly lonesome. That journey is even more isolating for parents of children with pediatric feeding disorder (PFD) who don’t follow the typical feeding and developmental trajectory.

That’s what makes Power of Two, Feeding Matters’ matchmaking program to support parents with one-on-one mentors, so vital. Having a friend to call, text or video conference away makes parenting a child with PFD much less isolating and a bit easier. Paula Benzing, a mom of three in Mesa, Arizona who has two children with PFD, says, “When I was struggling with feeling alone, it helped so much to talk to a coach who understood what I was going through and could just listen to me vent and air my frustrations.”

There are three main goals for Power of Two:

Decrease feelings of isolation that can come with a PFD diagnosis.

Give confidence back to parents who know their children best.

Offer education through every step of the journey.

Power of Two launched over a decade ago as an integral part of why Feeding Matter exists. The program informally began with Feeding Matters founder Shannon Goldwater and former CEO Chris Linn when they realized their children had the same provider, GI and feeding therapist. Their mutual support was a balm in the chaos of navigating feeding issues. When Shannon launched Feeding Matters – called P.O.P.S.I.C.L.E. at the time – she knew parent mentorship had to be a key component.

Athena Flicek, a mom of a child with PFD and Programs and Events Manager at Feeding Matters, describes the need for community support from the Power of Two program perfectly. “PFD is overwhelming. It’s a complicated disorder with complicated signs, symptoms and treatments. Having community support has helped me better navigate this disorder. Feeding Matters was built on the foundation of families, it’s in their history, it’s in their DNA.”

Record-breaking number of families asking for help

In 2023, an unprecedented number of parents are reaching out to Feeding Matters for support. Power of Two in its early days had 41 pairs. Today there are nearly 150 and growing. Parents come from countries worldwide, including: the US, Japan, Australia, Portugal and the UK.

Heidi Van der Molen oversees the program and matches pairs by developmental issues, diagnoses, geography and specific needs. In cases where a parent faces a new diagnosis or challenge with their child, parents can find an additional match who understands that issue.

The structure of the program is simple.

Families seeking support can select a one-time meeting with a Feeding staff member or family coach.

Families choose a three-month mentor match or a six-month mentor match.

Power of Two matches meet by phone or video conference at a cadence that works for them.

To ensure mentors are prepared to meet families’ needs, the Feeding Matters team provides resources, training and ongoing support.

How mentorship helps Feeding Matters families

Power of Two helps families in countless ways. Following are just a few of them.

Confidence/Empowerment: Having coaches who understand what it’s like to be a medical advocate for their children gives mentees the confidence they need to advocate for their children.

“Knowing I wasn’t alone gave me hope and helped me feel our struggle was valid. Having this outlet allows me to be a better mom. I’m learning how to be an advocate, how to ask for help and how to take care of myself so I have the capacity to take care of my family. This community has been a lifeline for us,” says Erica Mantel.

Reassurance: Many families feel guilt and stigma around medical interventions that can help their children. This is especially true for those parents who decide to get a G-tube for their children after initially feeling like this would be giving up on eating orally.

“Knowing another family with similar experience helped calm my nerves when I thought a G-tube was wrong for my daughter when it was right,” says Carrie Willmore.

Empathy: Anyone who’s ever been a parent knows it takes a village. Parents of children with PFD are left to navigate a significant part of their experience independently. That’s where Power of Two mentors step in to fill a crucial role.

“We had lots of supportive friends in our lives, but none of them could fully appreciate what we were going through with our daughter,” says Kamila Stanisch. “And, sometimes in their efforts to help and with the best of intentions, they said things that weren’t helpful. It was nice to hear other families tell their stories and meet people who had similarly challenging experiences.”

Community: PFD can be all-consuming, leaving little time for friends. Simple activities, like playdates at the park and lunch with moms and tots, are more complicated.

Kamila Stanisch says, “I was so consumed with trying to ‘out-therapy’ our daughter’s diagnosis that I didn’t feel like I had space to make new friends. As time passed, I realized how beneficial a conversation could be with someone else who was on a similar path. Eventually, I had a couple of mentors and the space they gave me to talk about my frustrations and the laughter we shared over the not-so-helpful things that people sometimes said were healing. It made me a better mom and it also allowed me to be a better friend. For my husband and me, it also opened up space for the hard conversations about our daughter’s future that we had avoided.”

Most importantly, joining the Power of Two program as a mentee or mentor is an opportunity to learn more about how to help children with PFD. “Everything you can read or watch about PFD helps bring a small bit of power back. Feeling that loss of control over being unable to feed your child is debilitating. The Feeding Matters resources helped me so much. When you “meet” this organization, whether it’s online, through a resource, a class, a coach, an employee, or a testimonial, it feels like you are finally meeting someone that is an expert on PFD, and that hope was what got me to where I am today. With a healthy, thriving four-and-a-half-year-old,” says Athena Flicek.

The ultimate testament to the program’s success is how many parents decide to give back as mentors once they move on from needing as much support. As Van der Molen says, “When the program is at its best, the mentee becomes a family coach, ensuring other families are not facing the journey alone.”

If you are a parent needing support, be sure to reach out to learn more about Power of Two. If you’re an experienced parent with a child diagnosed with PFD, we’re always looking for more great mentors. Please consider becoming a family coach. Click here to learn more.

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Thickening Breast Milk with Gelmix: New Guides and Handouts

Nutrition , Healthcare Insights

Published by Gelmix on May 18, 2023

This blog post is part of a corporate partnership with Gelmix.

We’re excited to announce new materials, recipes and guides for thickening breast milk with Gelmix Infant Thickener. Our goal with these materials is to improve caregiver education on thickening breast milk with Gelmix, to provide specific recipes and instructions for use, and to answer our most frequently asked questions about preparation.

First, we have a new demonstration video for thickening breast milk in the healthcare setting. Watch Lindsay M. Stevens, MA, CCC-SLP, Medical Facilities Manager for Parapharma Tech, demonstrate how to thicken breast milk. Lindsay discusses best practices for mixing breast milk in the healthcare setting and reviews recipes to achieve slightly thick, mildly thick, and moderately thick consistencies, including small volume recipes.

Additionally, download and print the new guide to Thickening Breast Milk In the Healthcare Setting which includes product information, mixing instructions and recipes for when thickening breast milk is recommended for swallowing difficulties, or for reducing spit-ups, in the healthcare setting.

Finally, we have two new printable patient handouts available. See Printable Guide to Thickening Breast Milk When Recommended for Reducing Spit-Ups and Printable Guide to Thickening Breast Milk When Recommended for Dysphagia for easy to print preparation guidelines for your patient’s specific thickening needs. These patient handouts are also available in Spanish, Guía Imprimible para Espesar Leche Materna Cuando se recomienda para Disfagia and Guía Imprimible para Espesar Leche Materna Cuando se recomienda para reducir el Reflujo.

Have questions or want to learn more? Visit our website to contact us, to request samples or to schedule a webinar in-service!

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