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Pediatric Feeding Disorders – Our Journey + Feeding Matters Conference Attendance

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Pediatric Feeding Disorders affect 1 in 37 children. A pediatric feeding disorder is defined as “impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction.”

Our son, Liam, who is now 6 was diagnosed with a pediatric feeding disorder called Avoidant Restrictive Food Intake Disorder (ARFID) in 2018.

Pediatric Feeding Disorders - Our Journey + Feeding Matters Conference Attendance

How Our Pediatric Feeding Disorders Journey Began

Our journey with pediatric feeding disorders began when Liam was around 9 months old. We attempted to introduce baby foods at 6 months per the direction of our pediatrician but Liam was not interested. She advised us to try again in a few weeks time, but when it got to be where he was 9 months old, he was not taking anything but the bottle. He wouldn’t take a cup, purees, soft foods, etc. We were then referred to a feeding clinic at our local Children’s Hospital and saw the team there when Liam was 13 months old.

Pediatric Feeding Disorders - Our Journey + Feeding Matters Conference Attendance

Making Progress

At 13 months old, they gave us some tips. They also encouraged us to put him on PediaSure to ensure that he was getting the correct nourishment. We did, but that quickly spiraled into being his ONLY source of nourishment. Shortly after, we switched him over to an organic powder formula called PediaSmart and he’s been on this ever since. He had an endoscopy to check for Eosinophilic Esophagitis (EoE) but it showed nothing more than GERD. For us, this was the beginning of the LONG journey with pediatric feeding disorders! This journey is a marathon, not a sprint!

Pediatric Feeding Disorders - Our Journey + Feeding Matters Conference Attendance

We had (and continue to have) Occupational and Speech Therapy for Liam, and eventually went inpatient at Mt. Washington Pediatric Hospital for a 6 week program to specifically address his limited diet and negative mealtime behaviors. It is hard to explain pediatric feeding disorders to those who don’t have experience with them! It is essential to find a tribe of parents and professionals that know and have experience with them.

Our experience at Mt Washington Pediatric Hospital in Baltimore was well worth it in 2018. We started with only receiving nourishment from a bottle, negative mealtime behaviors and refusal of foods to eating yogurt and making progress towards an open cup.

Pediatric Feeding Disorders - Our Journey + Feeding Matters Conference Attendance

Where We Are Currently

Now at 6 years old, Liam has overcome a LOT of his feeding challenges. He no longer has constant negative mealtime behaviors! Liam eats a variety of foods and is willing to try foods. Plus, he drinks out of a straw or open cup. Liam has learned to chew, and swallow which are HUGE challenges. He’s a rockstar and we are so proud of him. We will have protocols we follow for his feeding program but he’s a champion with them! Yes, there are still struggles, but he has made tremendous progress.

Pediatric Feeding Disorders - Our Journey + Feeding Matters Conference Attendance

International Pediatric Feeding Disorders Conference

Pediatric Feeding Disorders come in all shapes and sizes, as do the kids that are diagnosed with them. In April, 2021, I was invited to attend the 8th International Pediatric Feeding Disorders Conference. This conference was hosted virtually this year hosted by Feeding Matters.

This conference was geared towards professionals who work with families affected by pediatric feeding disorders. It is also focused on parents/caregivers of those with pediatric feeding disorders. The conference was awesome, and I enjoyed interacting with Feeding Matters, other parents and professionals.

The two-day conference was the largest of its kind and is accredited by The American Speech-Language-Hearing Association (ASHA) as well as the Accreditation Council for Continuing Medical Education. Feeding Matters recognizes the importance of a collaborative care model and invites all healthcare disciplines to attend the IPFDC. The event is presented by Mead Johnson Nutrition and Aveanna Healthcare Medical Solutions and underwritten by several additional sponsors. 

Feeding Matters

About Feeding Matters

For kids with pediatric feeding disorder (PFD), every bite of food can be painful, scary, or simply impossible to swallow, potentially impeding nutrition, development, growth, and overall well-being. Yet, there is no functional system of care for PFD locally, nationally, or internationally. That’s why Feeding Matters is dedicated to creating a world where children with pediatric feeding disorder will thrive.

Established in 2006, Feeding Matters is the first organization in the world uniting the concerns of families with the field’s leading advocates, experts, and allied healthcare professionals to ignite unprecedented change to the system of care through advocacy, education, support, and research – including a stand-alone diagnosis, the International Pediatric Feeding Disorder Conference, and the Infant and Child Feeding Questionnaire. In 2019, Feeding Matters reached more than 125,000 individuals in 50 states and 143 countries through their programs and website. To learn more about pediatric feeding disorder, visit feedingmatters.org or follow us on Facebook, Instagram and YouTube at @FeedingMatters.

Do You Think Your Child Has a Pediatric Feeding Disorder?

Feeding Matters is here to help! They offer a lot of online resources, family support, etc. There is even an “Is it PFD?” quiz on their website — HERE — that you can take! The resources are so thorough and available for you.

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