May 11, 2022
7:00 – 9:00 p.m. ET
Join our distinguished panelists during Pediatric Feeding Disorder (PFD) Awareness month to learn more, ask questions, and chat about what’s next in PFD awareness. We’ll discuss opportunities to build support in your state and steps you can take to advocate for families and professionals in PFD. Learn about the new PFD diagnostic codes and how things are going in practice. Finally, you’ll hear a parent’s perspective on the challenges faced obtaining pediatric dysphagia medical supplies and educational tools. Ask your questions and learn more about ways we can support those families.
This free event is open to all ASHA members and non-members. It is not offered for PDHs, CMHs, or ASHA CEUs.
Following is the transcript from this text-based event (no audio or video). Images uploaded during the live chat are no longer available.
Jennifer Fatemi, ASHA Moderator
Welcome everyone! We will be getting started shortly.
Before we begin taking questions, I would like to make a few administrative comments.
Ok, it's officially time to start. Our panelists this evening are
Lindsay M. Stevens, M.A., CCC-SLP. Lindsay is a Speech-Language Pathologist in Phoenix, Arizona who has practiced in a variety of settings with children and adults for nearly 20 years. Lindsay had the opportunity to serve the Valley’s most medically complex children at Phoenix Children’s Hospital in the neonatal, cardiac, and pediatric intensive care units, inpatient rehabilitation program, and outpatient services line for nearly 16 years. As the Clinical Specialist of Speech Pathology for the Rehabilitation Department at the hospital, Lindsay consulted in the Aerodigestive Program and led Arizona’s only medically based, multidisciplinary pediatric feeding program. Additionally, Lindsay contributed to several research studies and publications on pediatric dysphagia management, was an adjunct professor at the Arizona State University, provided therapeutic services in the home for children and adults, and worked in the public-school setting. Lindsay also has first-hand experience with dysphagia management as her two children experienced dysphagia and feeding difficulties during infancy. Lindsay joined Parapharma Tech as the Medical Facilities Manager in November2020 and is passionate about dysphagia management education.
Cuyler Romeo, M.O.T., OTR/L, SCFES, IBCLC, Director of Strategic Initiatives, Feeding Matters. Occupational Therapist and Pediatric Feeding Specialist Cuyler Romeo’s extensive leadership and clinical experience are instrumental in the execution and management of Feeding Matters’ strategic initiatives. In partnership with the CEO, Jaclyn Pederson, Cuyler collaborates with constituents to identify, track, and assess innovative approaches to the PFD system of care. Cuyler also facilitates strategic partnerships with select professional associations including the American Occupational Therapy Association (AOTA). Prior to joining Feeding Matters, Cuyler served as a founding partner of Mealtime Connections, LLC, and gained valuable insight on funding trends and industry implications as the director of clinical innovations at Therapy 2000. She is currently a treating clinician in Banner-University Medical Center’s NICU and works to advance the feeding skill domain by facilitating AOTA’s mealtime Occupations: Feeding, Eating, and Swallowing Community of Practice and serving on the CCCPD.
Courtney Redwine Morey, Parent Advocate @fancylikeannie. Courtney lives in Fort Worth, TX with her husband Spencer and two children Wells (4) and Annie (1.5). She has a degree in business from TCU focused on social enterprise that has been used while advocating on social media. Her passion, second to her role as mom, is to use her Instagram platform to openly share the beauty of life raising a daughter with Down Syndrome who has had many medical needs. This includes speaking up before, during and after specialists appointments, sharing resources of all kinds with families, an honest look into therapies, highlighting brands that promote health and inclusiveness and many more. Supporting families needing complex care as well as families experiencing feeding challenges like oral aversion and dysphagia are her biggest advocating priorities because of her own personal experience with Annie.
Jennifer Fatemi, ASHA Moderator
Please give a big Thank You to sponsor Gelmix/Purathick
I will now begin posting the questions.
Hello all! I will begin by sharing our daughter's feeding journey. At 17 weeks pregnant we got a call from my OB with the NIPT bloodwork results that showed there was a 62% chance our baby had Down Syndrome. The following week we chose to have the amniocentesis to confirm. It was at this appt with the MFM that I also found out about her heart condition of AVSD that would require open heart surgery. After a few weeks of wrapping my head around this news I transitioned from mostly feeling fear to an intense sense of protection over our baby.
Annie was born at 37 weeks and had a short NICU stay of just 9 days, we were so happy to get her home.
One deeply impressionable memory I would like to share is something her NICU nurse told me while trying breastfeeding for the first time. I had said, "I know babies with Down Syndrome have such a hard time with this because of their low muscle tone in their mouths and especially if there is a heart condition so I know she probably cant do this" and she sternly looked at me and said "Annie is not a statistic. Annie is Annie. You give her a chance to show us what she can do then we will know."
I needed that. That mindset has stuck with me through every medical and developmental experience we have faced.
She came home NG tube free and took the MAM bottle as well as breastfed. The goal was to get her to 4 months old for her AVSD repair.
Heart failure slowly progressed and feeding became more challenging. We had to cut out breastfeeding completely because it just required too much energy, but I am so proud of her for doing it and loving it for as long as she physically could.
It was very strange to me that Annie growing and her daily breastmilk intake was THE most important thing before her repair and yet there was no trained expert to support us in this.
Question 1: Submitted by Cuyler Romeo
Where you referred to therapy when you were discharged from the hospital?
We were not! At the time we were assigned a PT through ECI and I kept asking for help so we were switched to the OT on the ECI team who had some feeding training. She supported us the very best she could, but at the end of the day we needed more!
I work in the NICU and I learn best from families. Thank you for sharing your story.
Thank you for work in the NICU! I am so honored to get to share her story with this special group who cares to see changes for future families.
Open heart surgery was 1/29/20 and several of our baby friends had theirs in the months before us so I felt like I had a good idea of what to expect.
Except, Annie's did not go like everyone else's. At the 12 hour mark Annie was still struggling to come off of bypass. Shortly after Annie coded and a team of 10 spent 52 minutes resuscitating her while her surgeon sped back to Cook Childrens to put Annie on life support (ECMO). It was the hardest days of our lives. But we still had her and that was all we needed. Annie's recovery is a very long story that cannot fit in this space, but during those 68 days she was fed by TNP and then NG. By the last week we were up to 75% of goal feed, but the NG stayed in.
We came home on 13 medications/29 doses of medicine daily. There was no home nurses to help, it was just me and the small pharmacy set up in my kitchen. A few weeks later I began to have to suction Annie every 30 minutes because there was so much mucus constantly. She would vomit between 7-10 times a day and it got to the point I couldn't change that many onesies anymore and I was so concerned about her hydration, caloric intake, and medications not staying in her. Her pediatrician wrote a perscription for an anti vomiting med. Of course I had no plans to give it to her because I knew this wasn't addressing the root issue. The next day we saw our ENT. I went over everything with her and she explained to me that the NG being placed for such a long amount of time had given Annie a sinus infection. That is why the mucus was never ending and the need for all the suctioning. She would choke on the mucus/tube and vomit over and over. With her permission I pulled it out immediately.
Question 2: Submitted by Cuyler Romeo
I cannot believe you did this on your own. How did she do once the NG was pulled?
At this point Annie had been intubated 3 different times totalling 16 days, she had an NG tube in for 4 months and she had vomited hundreds of times. I wish I had known how all of these would inevitably lead to the oral aversion that we would battle next.
If I had taken that NG tube out sooner. If someone had been there to walk alongside us, to monitor and advise on the NG, instead it stayed in with no end in sight causing more harm than good when she was almost up to full feeds.
Then began the weekly weight check war with the pediatrician. When the NG tube was out Annie struggled to take her required daily ounces. Every week I asked for help and I was told she needed a g-tube surgery right away. Every week we either maintained her weight or gained, but because she wasn't perfectly on the growth curve it was not enough. All you had to do was look at this extremely squishy, rolly baby and see her weight was more than ok, she had wet diapers, her labs were perfect, yet g tube surgery was pressed on me like a boulder on my chest.
The Dr refused to consider what Annie had been through and her unique story, it was only about the curve and the statistics.
I was never asked how feeding therapy was going I DIDNT KNOW FEEDING THERAPY EXISTED. I didn't understand speech therapists outside the hospital could help us. The system totally failed us.
Access to feeding therapy is so important. Our feeding therapists (SLPs and OTs trained in FES) are here to support families. Your story is an example of the need for more education and open communication between all providers
I didn't want my daughter to have another surgery, I went to the pre op appt and the general surgeon told me how he would have to do the gtube "old school" because of the placement of Annie's pacemaker in her abdomen. Extending her chest scar all the way to her belly button, filling her with the gases, putting pressure on her lungs and heart, I said NO THANKS! The surgeon was concerned, I was more than concerned after our ECMO trauma, her pediatrician was still adamant it happen.
We left that pediatrician and I devoted my every ounce of energy to getting Annie over this bottle aversion. I found a feeding therapist like a needle in a haystack on a facebook moms group recommendation. I couldn't have done it without Mary. Mary didn't have so much help to offer with the bottle exactly, but she did teach me so so much about feeding and we began to work on positive experiences for A with food (at this point she was 9 months).
If I hadn't found this help on my own, I don't know if and when Annie ever would have learned to eat. That pediatrician actaully advises *against me working on food with Annie saying it would distact her from bottles and purees were empty calories. Now, I know that there is a precious window of time for learning to eat that should not be passed up.
A positive connection to eating is absolutely imperative!
I learned that in real time! And when there is so much stress and pressure from your medical providers for weight gain that stress transfers over to your child so its just a totally unhealthy system. Getting in a clear head space was so important when I was working through the bottle, learning the straw and starting solids! I used music and being outdoors to help us both
Annie's bottle aversion slowly dissipated, I worked daily on the honeybear cup even when she showed no interest initially, and she learned to love food in her mouth.
Getting Annie past her oral aversion is the single hardest thing I have ever done and also my greatest accomplishment in life.
Not all mothers have the resources I had. I have great insurance, I have a husband who helped every second he wasn't working, the ability to be a full time mom who could put in the time, family who cared, access to a children's hospital, live in a city of almost a million people meaning more chances for resources. What about the single mom, or the full time working mom, or the mom who English is her second language, terrible insurance, more children than two to take care of, no family around, smaller/rural town. We have to do more for these children and families. There has to be more online resources *and more trained experts in feeding!! Feeding centers.
If a child has a bottle aversion there is literally no one out there to offer support in my experience and in the 100+ messages from mothers asking for help after learning our story on social media. This has to change. I want this to be "what is next in pediatric feeding disorders"
Thank you so much for your transparency and willingness to share this vulnerable moment in your families lives. We at Feeding Matters have a mission to do just that. We are the first organization in the world to unite families and healthcare professionals to improve the system of care for children who struggle to eat.
Question 3: Submitted by Caroline
As a parent it must have been very hard to navigate this. Were you able to get a good support system in place easily, or did you find this difficult?
It was very hard to navigate. It was not easy which is why I want to speak out to get more resources available to that are easily accessible!
Question 4: Submitted by Cameron
Are you currently helping other mother's find resources? Have you considered writing a book to share your story about Annie?
Everyday! It is primarily through Instagram, but there can be so many messages making hard to keep track. I have probably added over 50 contacts into my cell phone of moms I don't want to lose track of. We just learned this week that Annie and Wells have both been accepted to be students at a very special preschool called Kinderfrogs. My schedule is about to change drastically in the fall from hardly having 5 minutes to myself to both kids going to school 8:30-3:00 daily! I plan to get right to work advocating and volunteering at Cook Childrens, starting a website to organize resources, and yes! the book! I have been encouraged by so many family members and friends to write a book and I want to do it for Annie. I need to do it before time passes and I forget the emotions and details. The kids starting school is my chance.
Question 5: Submitted by Melanie G.
In children with down syndrome is there more difficulties with solids or liquids?
Lindsay M. Stevens, MA
Great question, Melanie. Every child with Down Syndrome is so unique in their medical status and complexities. Because children with Down Syndrome tend to have low tone in their muscles, they often struggle with dysphagia/safely swallowing liquids and transitioning to mature foods that require the strength and coordination for chewing.
Trouble with liquids stems primarily from dysphagia. The low muscle tone of the body is the primary cause for this. This is why swallow studies are so imperative for our children and I have found that it often treated once things are bad (pneumonia) vs preventative care. Solids of course can be a challenge as well, but there is such a range of abilities!
Yes, I agree; children with Down Syndrome may have feeding and drinking problems while others may not. As Lindsay and Courtney referenced medical problems can impact overall safety of feeding, eating and swallowing and these challenges often change over time as the child develops. Some children may have cardiac problems, respiratory problems, risk of diabetes or celiac, or even something more benign such as late eruption of teeth requiring additional time to learn to eat safely. It is important to be well versed in the possible medical complications as well as developmental trajectories so you can serve as a partner with the family in determining how their unique child likes to learn and how best they eat.
Question 6: Submitted by Katie
We are being pushed towards a gtube in 2 weeks. I don’t feel like I can get my son to eat enough before the surgery. It’s almost like I have to do it or my baby may not thrive. He aspirates and I know that’s dangerous. How do I navigate this safely?
Lindsay M. Stevens, MA
The decision to get a g-tube is such a big one. Of course we don't know your story Katie, but sometimes a G-tube can be a really good thing. It can help ease anxiety about 'getting all the calories' in and provide the nutrition and hydration a little one needs. When you know your child is being fully nourished, you can take the time it takes to build oral motor skill with eating and decrease oral aversion.
We encourage you to continue the conversation with your provider and seek support from other families who have been on a similar feeding journey. The good news no matter your decision is that GTs are not permanent and do not mean a person stops eating. Your child needs to work with a feeding therapist as weaning from a tube starts the day it is placed. It is so important that your child feels well and is well nourished so you both can start enjoying mealtimes. GT feeds are mealtimes too. It is such a challenging journey; thank you for asking such an important question.
In my experience, thickening with Purathick was the safe, healthy way to safely feed Annie. I am so grateful I found this specific product after a long road of using rice cereal at first which proved to be unsafe for long term use but also made her constipation struggles worse.
This is such a great discussion and helps us better understand the feeding needs of our community. Feeding Matters has long recognized the absence of a universally accepted term for feeding problems was the root cause of the system issues that failed families and professionals serving children with feeding disorders. One of the first steps in providing more optimal care is to educate ourselves so we can educate and advocate for others.
Children who are struggling to eat due to medical, nutritional, feeding skill or psychosocial dysfunction may have pediatric feeding disorder and you as the parent or the feeding provider may be the first person to identify a problem may be present.
In March of 2016, Feeding Matters gathered in Arizona with over 17 experts from around the world to determine a name, definition, and diagnostic criteria for pediatric feeding disorders. This pivotal meeting led to two years of collaborative work to write and publish the paper, “Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework" in the January 2019 Journal of Pediatric Gastroenterology and Nutrition.
Pediatric feeding disorder (PFD) is defined as: “impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction”.
Reference: Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, Delaney AL, Feuling MB, Noel RJ, Gisel E, Kenzer A, Kessler DB, de Camargo OK, Browne J, Phalen JA. Pediatric feeding disorder: consensus definition and conceptual framework. JPGN 2019;68(1):124-129.
A disturbance in oral intake of nutrients, inappropriate for a child’s chronological age (vs. developmental age), lasting at least 2 weeks and associated with 1 or more of the following:
Symptoms can be further classified into acute PFD
This image represents the 4 domains of PFD. Challenges can exist in any or up to all domains. If there is a challenge in one domain such as medical, the child is at risk for dysfunction in the other domains.
The consensus definition can be accessed here: https://www.feedingmatters.org/pfd-alliance/advocacy/
Question 7: Submitted by Katie
What resources do you recommend for me to do at home aside from our therapy? I feel so lost. Therapy is great but what do I do at home?
Starting with the Feeding Matters Family Guide to PFD may be a good place to start. This resource guide walks you through the PFD definition and equips you will information to have more informed discussions with your team. It also includes questions to ask your provider and Q and A to our most common questions from families.
You also may find it helpful to connect with other families or other providers in a protected environment. We have a free app that has a group just for families. Search Feeding Matters PFD Alliance to download the free app.
PFD is complex and typically requires several subspecialists working together. Refer early and refer often across the four domains of PFD.
Primary Care Physician, Developmental Pediatrician, Pediatric Surgeon, Allergist/Immunologist, Cardiologist, Dentist, Endocrinologist, Gastroenterologist, Geneticist, Neurologist, Nurse Practitioner, Otolaryngologist (ENT), Pulmonologist, Radiologist
Registered Dietitian Nutritionist (RDN)
Occupational Therapist, Speech Language Pathologist
Psychologist, Behavior Analyst, Counselor, Social Worker
PFD may present in multiple ways. It is important to be able to identify PFD by domain so you can seek support in the domains applicable. Let's start with medical.
Signs and Symptoms of PFD by Domain
Next is Nutrition
Next is Feeding Skill for our SLPs and OTs
Feeding Skill specific to ANY age
Feeding Skill specific to an INFANT (12 months of age or younger)
Feeding Skill specific to a CHILD (12 months of age or older)
Lastly but just as important, psychosocial
Resource: When to Refer Rack Card https://www.feedingmatters.org/toolkit/when-to-refer-rack-card/
Early detection and treatment of pediatric feeding disorder across all four domains is critical to the long-term health and well-being of affected children. Early referral to the appropriate healthcare professionals in each domain associated with signs or symptoms of PFD is strongly encouraged.
Lindsay M. Stevens, MA
This is such great information from Feeding Matters; thank you, Cuyler. Among the many challenges that families experience when their child has a pediatric feeding disorder and dysphagia is getting the cost of their thickening agent covered by insurance.
If you feel inspired to help progress the system of care for pediatric feeding disorders or would like to be connected into a passionate group of families and providers seeking support and information, please join the Feeding Matters PFD Alliance. The Alliance is where our committees exist and where the work is done. It is for all and free to all. Please join and start receiving communication here:
Pediatric Feeding & Eating Disorder Help - Feeding Matters
PDF Alliance is a group of donors, advocates, volunteers and providers that seeks to improve the system of care for children with pediatric feeding disorder through advocacy, education, support, and research.
Please view the PFD ICD-10 Toolkit for a comprehensive resource guide for PFD.
Feeding Matters also has direct support for families. The Feeding Matters’ Power of Two program is an international system of support for families that often feel isolated and overwhelmed.
Qualified family coaches who have first-hand experience with PFD are matched with families struggling to overcome the medical, emotional, financial, educational, and social issues often faced with PFD. Through shared experiences, Power of Two family coaches offer emotional support, compassion, resources, and guidance – reminding caregivers that they are not alone.
PFD does not discriminate and this issue can impact any family. Please know we are here to support you no matter your circumstance.
Once this form is filled out and submitted, you can expect a confirmation email from Feeding Matters within 24 business hours.
You also are encouraged to download the Entry-Level PFD PowerPoint and presenter script to start educating your community today. You can modify this nonbranded presentation to fit your education goals and share with any audience of your choosing, such as universities, medical teams, public health entities, clinics and community groups. Thank you for spreading the word about PFD.
Jennifer Fatemi, ASHA Moderator
I am afraid we are out of time. Perhaps the panelists have something they would like to say in closing?
Lindsay M. Stevens, MA
We really appreciate everyone joining today to learn more about pediatric feeding disorder and some of the challenges that come along with it.
Thank you for this opportunity to share and participate! I encourage all parents reading to join the Alliance that was described in the post below to learn and advocate for our children!
Thank you all for joining our conversation. Together we will change the future for all families and children with PFD.
Jennifer Fatemi, ASHA Moderator
Thank you all so much for your great questions and comments and thank you, panelists, for your time and great information! This chat will be available immediately after it has ended from this page.
Thank you again to sponsor Gelmix/Purathick