Jalenna Francois, Author at Feeding Matters

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Advancing Feeding Matters: A Report from Dublin and London

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.

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 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.”

baby with nasogastric tube and singling — 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.

Baby with Gastrostomy Tube — 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.”

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

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.

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.

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.

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.

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!

Establishing a Self-Care Plan When Caring for a Child with Disabilities

Self Care , Picky Eating , Family Stories

Published by Dorothy Watson on May 04, 2023

This blog post was submitted by community member Dorothy Watson at mentalwellnesscenter.info. Interested in having your work on our blog? Learn more here.

Taking care of a child with disabilities can be incredibly rewarding, but it’s also incredibly challenging. The weight of responsibility and feeling of being overwhelmed can often lead to burnout for parents and caregivers. These individuals must make self-care an integral part of their plan to prevent burnout. This blog post will provide information and tips on how to create a sustainable self-care plan specifically designed for parents or caregivers of children with disabilities.

Learn To Recognize Triggers

The first step in creating an effective self-care plan is to identify triggers that cause stress, anxiety, or overwhelm. Identifying triggers allows individuals to recognize when they may be headed toward burnout and take steps to avoid it. For example, if going grocery shopping with your child causes high levels of stress, you can look for ways to make the experience easier or find alternatives such as ordering groceries online. Once you have identified your triggers, you can find ways to manage them proactively and prevent burnout from happening in the first place.

Assess Your Fatigue Levels

Caregivers should also become aware of their fatigue levels to create a successful self-care plan. When caring for someone who is on the autism spectrum, energy management becomes even more important as it can be easy to get burned out quickly due to constantly dealing with new challenges and trying different approaches.

Developing awareness around your energy levels will allow you to adjust your self-care plan accordingly when needed and create realistic expectations so that you don’t become overwhelmed by the tasks ahead of you. Sometimes, small changes like reducing clutter and spending more time in nature can be the boost that you need to get through the day. Both have been shown to reduce stress and life moods.

From Architectural Digest Reviews

According to a recent survey, around 33% of people report feeling extreme stress. Promoting a stress-free home environment has been linked to better physical and mental health. A peaceful home not only aids in sleep, reduces stress, and enhances overall well-being, but also boosts productivity and can help us find relief from the demands of daily life.

Our team believes that homeowners should feel at peace in their homes amidst their busy and hectic lives. We published a piece that includes ways to de-stress your home without sacrificing your style or time. Our team believes that homeowners should feel at peace in their homes amidst their busy and hectic lives. We published a piece that includes ways to de-stress your home without sacrificing your style or time.

How to De-Stress Your Home (2023 Guide).

Set A Few Personal Goals

Another important step in creating a sustainable self-care plan is setting realistic personal goals that are achievable within any given timeframe. Goals such as returning to school or finding a new job may seem out of reach at times, but utilizing tools like an online resume builder can be especially helpful in this process.

If you’re not sure where to get started, look for websites that allow you to choose a free professional template and add your own custom touches, such as an eye-catching font. If your goal is to start a business, look for help with forming an LLC for protection; a formation service can handle the paperwork so you can ensure your business receives all the tax benefits that come with it.

Utilize Self-Care Tactics

Once realistic goals have been established, utilizing various self-care strategies is crucial in avoiding burnout while taking care of someone with special needs. Try mindfulness practices like yoga or meditation, spending quality time with friends or family members, taking regular breaks throughout the day, getting enough sleep each night, and engaging in leisure activities that bring joy. These strategies allow individuals caring for someone who is on the autism spectrum time away from their responsibilities while still feeling capable and productive enough themselves.

Take Care of Your Body

When you care for someone else, it is easy to put your own needs lower on the priority list. But that is a big mistake. When you don’t care for your body, you actually become more tired and unmotivated. Instead, take steps to treat your body like it deserves to be treated. Fill your kitchen with healthy snacks, like fruits and nuts, that you can grab instead of something sugar-laden. And make an effort to park farther from your destinations so that you can get in a few more steps. You’ll find yourself feeling better physically and mentally more quickly than you might expect.

These practices will also help your little one to see what it looks like to be healthy. If you struggle getting your child to eat healthy foods, modeling is one great way to help change their perspective on those foods. You can also reach out to Feeding Matters, especially if you feel that your child may have pediatric feeding disorder. They have resources to help you help your child with their eating habits.

Ask For Help When You Need It

Although creating an effective self-care plan is essential when caring for a child with disabilities, it’s also important to seek professional assistance when needed so that burnout doesn’t take over entirely. There are counselors available both online and offline who specialize in helping individuals cope with life transitions associated with taking care of someone who has special needs. Additionally, there may be local support groups available where caregivers can come together and share stories and experiences, and this can help you figure out a care plan.

Consider Everyone’s Needs and Make a Plan

Creating an effective self-care plan as a caregiver for a child with disabilities can take some time, as you’ll need to constantly assess what works and what doesn’t. Consider keeping a journal that will help you vent your frustrations, and look for online resources that will assist with goals like starting an LLC or finding a new job. Try to be patient as you get started and know that once you begin to find strategies that work, the pieces will fall into place.

The views and opinions expressed in this blog post are solely those of the author who submitted it and do not necessarily reflect the views of Feeding Matters. We do not endorse any products or services mentioned in the post, and we are not responsible for any errors or omissions in the content. The information in this post is provided for educational and informational purposes only, and should not be considered as a substitute for professional advice.

What does it take to create a movement?

PFD Awareness Month

Published by Jaclyn Pederson, MHI on Apr 27, 2023

Friends of Feeding Matters,

I’m always interested in new trends and emerging technologies, so I’ve been exploring the new AI tool, ChatGPT. Recently, I asked ChatGPT: what does it take to create a movement?

It shared that a movement requires a combination of vision, leadership, engagement, planning, resources, and persistence.

For me, this answer was validating. It’s exactly what we experience in the Feeding Matters community – a movement for pediatric feeding disorder (PFD). The opportunity to support all families on their feeding journey.

This month, our community was able to engage through the success of our International PFD Conference, which is also available on-demand for full credit through the end of May. This trauma-informed, evidence-based event brought together nearly 1,000 registrants from over 65 countries to learn the latest research, hear from families’ lived experience, and to receive tangible ways to improve practice. We were honored to see the active involvement of both parents and professionals collaborating to advance PFD research and practice.

During the conference, we received powerful feedback from attendees, including quotes such as, “I am so excited to see the inclusion of family voices into the development of care plans,” and “The collaboration across systems with this research! Great work!!” We also recognize the importance of emotional support for families and appreciate the reminder that an attendee shared in the chat, “Difficult feelings may surface in the future, even if they haven’t yet.”

Carrying forward the success and community built from the conference, we are eager for the arrival of May and PFD Awareness Month. During the month, we invite you to help us spread awareness of PFD and raise funds to help us do this important work. Together, we are building a movement for PFD, and your engagement and persistence allows us to create the world we all envision, a world where children with PFD will thrive.

Thank you for your ongoing support of Feeding Matters and for being part of the movement. This community is changing the world.

Best,

Jaclyn Pederson, MHI
Feeding Matters CEO

4 things every pediatric occupational therapist should know

Healthcare Insights

Published by Kate Barlow, OTD, OTR/L, IMH-E on Apr 25, 2023

In honor of occupational therapy month this April, a leader in addressing pediatric feeding disorder shares what OTs can do to improve care for children

feeding occupational therapist — Kate Barlow OTD, OTR/L, IMH-E

By Kate Barlow, OTD, OTR/L, IMH-E
Associate professor of OT at AIC

Early in my occupational therapy career, I worked with a girl who appeared to be in pain every time she ate. She couldn’t speak or communicate well, but it was clear to me that something was wrong.

After checking with her mom, I expressed my concerns to her pediatrician, who instructed me to continue offering milk. It was then that I encouraged the mother to find a developmental pediatrician.

Through evaluation and my conversation with the developmental pediatrician, the girl got a G-tube. She gained weight. Her whole demeanor changed once she was no longer uncomfortable. It was the first time I felt the power of advocating for one of my clients.

As occupational therapists, we always make the best estimates based on our experience and clinical observations.

This was an important lesson for me that I need to trust my gut and be there for my clients. If we as clinicians don’t push for those kids and families, they may not get the care they need.

I’ve been advocating for children with feeding issues ever since.

Feeding is among the main reasons kids are referred to an occupational therapist (OT). And yet, as an OT, I see that the work we do for kids’ feeding issues is an area that needs improvement. With more awareness, education and system-wide assessment tools, all children with feeding issues can access better care.

Universal screening for feeding issues would identify more children who need support earlier

Feeding issues in young children are so common that I believe all children should be screened for feeding concerns. Similarly to school-wide hearing and vision testing, feeding screening should occur in early childhood education centers and schools. We as OTs should advocate for universal screening for feeding issues.

Conservative evaluations estimate that PFD affects more than 1 in 37 children under the age of five in the United States each year. That rate is even higher for children with developmental delays.

A recent study indicates that feeding problems could indicate a developmental delay. Results showed that compared with children who never experienced feeding problems, children who experienced high feeding problems at one or two time points were more than twice as likely to have a delay on all Ages and Stages Questionnaire (ASQ) domains. Children who experienced high feeding problems at all three-time points were four or more times as likely to have a delay on all ASQ domains.

OTs and SLPs need a comprehensive screening tool

With the help of a Feeding Matters grant, Dr. Paula Rabaey and I completed a research study, “Investigation of Assessment Tools in the Area of Pediatric Feeding Evaluation: A Mixed Methods Study.” We surveyed 263 pediatric occupational therapists and 182 speech and language pathologists who identified as pediatric feeding therapists. Results showed that OTs and SLPs use various assessment tools. Non-standardized assessment tools were most commonly reported in assessing all four domains of pediatric feeding disorder: medical, nutrition, feeding skill, and psychosocial.

The results indicated a clear need for a standardized assessment tool covering all pediatric feeding disorder domains. The research will be published in the American Journal of Occupational Therapy this summer.

Clinicians need to continue constantly learning

Today’s occupational therapy programs include more pediatric feeding, eating, and swallowing education. In order for occupational therapists to stay up to date on pediatric feeding issues, all feeding therapists need to participate in continuing education courses.

The International PFD Conference from Feeding Matters is an excellent way to level up your pediatric feeding skills knowledge. The conference features the latest research and methods from leaders in the field and attracts clinicians of all levels of experience. The virtual conference is available live Thursday, April 13 through Friday, April 14, and then virtually until Wednesday, May 31.

feeding occupational therapists can benefit from attending the IPFDC

Feeding therapy needs to be culturally sensitive

We as clinicians do a great job of educating parents, and it is important to be culturally sensitive when working with families. I recently received the infant mental health endorsement – IMH-E – emphasizing the importance of culturally sensitive, relationship-focused practice.

It’s important to consider a family’s cultural norms, home life and income level when recommending what foods children should or shouldn’t eat and how they should approach mealtimes.

We need to ask open-ended questions to access information we might not have even considered and so that families don’t feel judged by any insinuations.

For parents, struggling to feed a child is extremely challenging. It’s our job as clinicians to do everything we can to make that a little easier.

Kate Barlow, OTD, OTR/L, IMH-E® is an associate professor at American International College. She’s also the current ambassador for the CDC’s Learn the Signs. Act Early. program for Massachusetts. She has over 20 years of clinical experience that includes public school practice, early intervention, a pediatric hospital-based outpatient clinic and management. Her areas of clinical expertise are early identification of delays and pediatric feeding.

Author: Jalenna Francois

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