Feeding Matters (feedingmatters.org) is the first organization in the world serving kids with pediatric feeding disorder (PFD) developed by mothers and guided by an interdisciplinary team, of professionals across communities to improve the system of care for children with pediatric feeding disorder. Founded in 2006 by mothers of infants and children with persistent all-encompassing feeding problems, it has partnered in the latest developments to advance the research and treatment of pediatric feeding disorder.
Their efforts have now made possible an amazing milestone in the evolution of accessing support for infants and children with feeding problems, and their families.
The U.S. Centers for Disease Control and Prevention (CDC) has officially approved Pediatric Feeding Disorder (PFD) as a diagnostic code (R code) to the International Classification of Disease edition (ICD-11) in October 20201.
This creates a stand-alone diagnosis and definition for PFD to provide common diagnostic criteria to ensure early and accurate diagnosis among clinicians when assessing children with feeding difficulties.
For so many years, pediatric therapists have been advocating little patient by little patient to bring recognition of the need for this stand-alone diagnosis. I remember starting out back in the late 70s when we had no advocacy group like Feeding Matters and the team of experts assembled to articulate the need and open the doors for so many infants and children in a timely comprehensive way. Mothers especially were often left to feel that “failure to be able to feed” your child was like “failure to be a mother, as one of the founding mothers of Feeding Matters told me years ago.
All of the pediatric clinicians in the trenches, like me, thank the professional team for the diligence to see this through. And we thank the founding mothers of Feeding Matters who had the courage to advocate and persist in their search for a change, despite such arduous odds.
This successful effort has the potential to change the trajectory of the lives of many infants and children, and their families. We are blessed to be a part of it!
Click on this link for a free download of the seminal article DOI: 10.1097/MPG.0000000000002188).
Click on this link for the Feeding Matters press release:
This manuscript was released in 2019. It is a compelling read about potential adverse effects of cereal thickeners (rice versus oatmeal) added to formula, and adding medications to formula, and their impact on osmolality. Alteration of ready-to-feed preterm formulas may significantly increase osmolality and have unintended consequences (feeding intolerance, pain, prolonged GI transit, bacterial overgrowth).
The AAP has advocated against the use of thickening agents for high risk preterms under 44 weeks PMA. In the NICU and with infants after discharge in general, we always need to take pause prior to thickening feedings for infants with dysphagia, and do so after other interventions are offered (change in nipple flow rate, position, use of pacing strategies). For many infants, implementing these strategies will support safe swallowing. This manuscript adds to our understanding of the importance of considering risk-benefit ratio in all that we do.
The salient findings from this study are:
1) Cereal thickening amounts and agents added to ready-to-feed liquid preterm formulas impact osmolality and can cross the limits of AAP safety thresholds. Specifically, the thickening agent increases osmolality, and oatmeal contributed to greater osmolality compared with rice on an equi-volume basis. 2) Commonly used vitamin and electrolyte supplements added to ready-to-feed preterm formula can remarkably increase osmolality
They conclude: 1) When thickening is still a strong consideration for Dysphagia/GER management, the ready-to-feed thickened formulas may be a safer alternative as the mixture is more homogeneous and has been vigorously tested, and passes FDA regulations including osmolality thresholds. Other alternative treatment strategies may include modifications to nipple flow or feeding volume, pacing while feeding, or appropriate positioning of the infant during feeding. 2) mixing medications in the entire volume of feed, or dividing doses across multiple feeding sessions mixed with feeds to decrease the osmolality as much as possible.
I am attaching this manuscript as it will be a good discussion point with our medical teams in the NICU, with pediatricians and GI specialists, and for those of us who follow infants in the community.
I hope this informs your practice.
Here is a link to this article.
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