The holidays reminds me of fun at Grandma’s house: playing with cousins, building with Tinker Toys, sledding so long that our mittens (and fingers!) were frozen solid, and decorating cookies. These sweet memories have a special place in my heart.
The holidays with tube fed children should be equally memorable. In a time of year that seems to be focused on food (chocolate in stocking, decorating cookies, and of course the big family dinner) it may feel like it is impossible to have a “normal” holiday. However, simple modifications can make all the difference for your little one. Here are a few ideas to consider:
- Take the focus off of food. Traditionally, we pack the holiday season with tasty treats. Instead of focusing on edible gifts, try other small toys and unique gifts. Stuff your stockings with hair ties, coupons for a special date with mommy/daddy, craft projects, and toy cars. These small trinkets allow the fun to continue long past when the snacks are devoured.
- It helps to notify the family members who may not know all the details of the health situation, this way there are no awkward questions or pressure about “just try to eat a little mashed potato”. Understanding and compassionate family and friends can really help support caregivers during holiday dinners when they do have more insight on the situation.
- Enjoy nature. Bundle up in warm clothes and head out with friends and family. Sledding, hiking, building snowmen and having snowball fights are all a blast, especially with friends! Just remember to secure the feeding tube so that your child can enjoy the fun without harm to the tube; an emergency run to the hospital puts a damper on snow fun.
- Pack an emergency kit. Don’t forget that winter weather may trap you in at Grandma’s house. Pack plenty of formula and supplies: syringes, gauze, tape, extensions, etc. Don’t forget your pump and charger (and a backup, if you have it!), a backup feeding tube, feeding bags and a gravity bag (in case heavy snow comes and the power fails).
- Have fun! It’s okay to create new family traditions and memories without feeling like you are abandoning tradition. Incorporating more going and doing instead of giving and receiving is great! The holidays is not about the gifts or food, it’s about bringing family close, loving others and celebrating the season
- Is there a formal assessment that parents and healthcare professionals can use to help “grade the ask” for children who refuse to eat? Do you have any strategies you recommend?
First of all, I believe we need to be careful about the words we use. I, personally, do not usually talk about children “refusing to eat”, and do not chart “refusal behaviors”, as such. I chart other things. I see the adult role as “offering” appropriate foods and children can eat them or not. I do not describe children as “refusing”. I describe them as communicating something to us and we, as their caring grownups, need to play detective and try hard to understand why they are not YET able to eat that food. I think when a child is not taking the food we offer, there is a reason. But, might we be asking too much?
In my new book, I talk about grading our ask. There is not a formal grading the ask assessment, just guidelines. Is the food or liquid safe (and does the child BELIEVE that?) Is the food the right developmental ask? (Is the child developmentally ready for that food, utensil, or eating skill?) Is the food the right sensory ask? (Is the child YET comfortable with the look, smell, sound, texture or taste of that food? Can we modify it so the sensory ask is smaller, more graded, and the child is more motivated to try it?) Is the food the right motor ask? (Does the child have the safe and confident eating skills needed for the food offered?) Is the food the right emotional ask? Can we start where the child feels comfortable and successful and tiptoe from there? If the child has had scary or worrisome experiences with that or similar food or mealtimes in the past, are we pushing him right into LOTS OF WORRY with our ask? Can we scale that back? Are we expecting the right independence ask? Are we requiring the child to eat when WE feed him, when he is perfectly capable of feeding himself?
We could chart refusal behaviors, but maybe “refusal” in that situation is the right response for that child from his perspective. I actually believe I could get ANY child to “refuse” just by the way I presented a food. I look at refusal as MY NEED TO ADAPT, (grade the ask) NOT the child’s need to comply with my demand.
- How do you define a “successful” treatment for a child with a pediatric feeding disorder? Is there criteria you recommend?
Successful treatment for a child, in my opinion, requires the parent to be included as an active participant in the WHOLE process. We need to support families at the pace the child AND PARENT are comfortable. Just like I believe that if the child is “refusing” they are communicating some type of struggle to us, and WE MUST adapt, I also believe if a parent is not successful, then we, as supportive team members must try to understand why, meet the parent where they are at, where they are ready, and re-think how we are offer support. Just like not all treatment strategies work for all children, not all home strategies work for all parents. We adapt and partner with parents to determine next steps.
We think of success, not in number of bites or reducing the number of refusals, though that is one way to define progress. Instead, we look at the development of life-long skills, such as demonstration of a positive tilt, opening the mouth to indicate readiness for the offered spoonful or nipple with the child pacing the meal rather than the adult. We look at the life-long skill of confidently learning new food trying skills. We look at being able to eat with the family at a family meal. We look at positive food interactions (being able to touch food and pass food, serve food, help in mealtime jobs). We look at how many ways can the child feel celebrated around food and meals, (rather than feeling like he is disappointing his grownups every meal). Success can be the child bringing her own spoon to her mouth to feed herself rather than being fed by an adult. Success is also helping the child feel better, take in the needed nourishment, learn the skills to confidently chew and swallow foods and liquid, and enjoy the sensations of eating, and enjoy the mealtime with others. Can it be a success if a child can happily come to the mealtime, enjoy the food offered, and be allowed to leave the table when full?
The webinar I did for Feeding Matters is about how Food is Sensory. I outline lots of ways to look specifically at the look, smell, sound texture and taste of foods so we can carefully offer new foods in ways that dilute the worry and allow children to be active and joyful participants in the process.
- What can parents and healthcare professionals do to create an environment that encourages positive mealtime experiences?
The first thing I like to do is help parents and professionals imagine THEY ARE THE CHILD who is struggling to eat. Imagine how THEY themselves would like to be approached if THEY had a big mealtime worry, if they were worried about texture, or swallow safety, or if they felt badly when they ate, or if they could not manage the skill of eating. I have always thought that putting myself in someone else’s shoes is a great starting place. (Check out the Grasshopper Story ).
The second thing I think about to encourage success is starting from a place of MEALTIME PEACE. When parents and children are totally stressed about mealtimes, it is hard to help either of them want to try anything new. I ask parents, what would YOU need to do in YOUR house to achieve Mealtime Peace, a mealtime with no anger, crying, pushing, arguments, and no pressure? Maybe the child needs rehearsals, to learn how and what others eat. Maybe she needs food rehearsals where she gets to explore the food before well-meaning grown up puts it in her mouth. Maybe the child needs to be offered new foods or textures in such tiny incremental sensory changes so that it is hard for her to notice (or worry ) about the change? Maybe the child needs to eat comfortable foods at the meal and work on new food trying away from the meal, bringing the new food or skill to the table when comfortable? We aim for Mealtime Peace because when calm and comfortable, children are in more of a learning mindset rather than an escaping mindset. They can learn about family togetherness, manners and what to expect from a meal. They can trust at that place of Mealtime Peace that they will not be forced or pressured into trying new, that there will not be sensory surprises and that they are a celebrated part of the meal.
- What tips do you have for families and healthcare professionals looking to introduce new foods to a child with a pediatric feeding disorder?
When introducing new foods, can we start with foods or liquids that the child enjoys or is currently successful with? Success, comfort and enjoyment can be our starting place.
I like to offer rehearsals in trying new foods. In a rehearsal, a child gets to see others eating and interacting with that food. They get to see what we do with that food and how we eat it. They get to explore the look, smell, sound, texture and taste of the food before it ends up in their mouth. No sensory surprises. They get to help put it in their own mouth, or to their own lips when THEY are ready, when the rehearsal was motivating and they show interest or readiness. Sensory exploration of the foods helps the child be ready for it. For example, smelling a food is a rehearsal or preview that gives the child an idea about the taste before it is put in her mouth. Touching the food can give the child the idea of the food texture, again, before it is on her tongue. If you were worried about trying a new food, would you put a food in your mouth that you could not, would not even touch? Having these sensory rehearsals can really help.
- Considering the newly published consensus definition of PFD, which domain or factor do you feel most greatly influences the child’s relationship to food and the caregiver who feeds them?
In my experience, all the domains of PFD, medical, nutritional, feeding skills and psychosocial, influence the child’s relationship with foods and their caregiver. When a child struggles to eat for any reason, caregivers worry. Infants and children communicate that their mealtimes are not working for them by not eating, not eating enough, struggling with the motor skills of eating and sensory aspects of foods and, often, pushing their caregiver away. These reactions influence their relationships with food and with those who lovingly want them to eat more or differently.
As parents and professionals try to understand the roadblocks to confident and enjoyable eating, the mealtime interactions can become a stressed communication. The medical aspects of PFD relate to how well the child feels, if they have the endurance and physical abilities to eat. The nutritional aspects relate to the child’s ability to take in enough nutrition on their own to grow well. The feeding skills including muscle, motor coordination and sensory aspects of food influence eating enjoyment and confidence. And the psychosocial aspects of eating relate to the child’s interactions with caregivers and the mealtime. The meal becomes a constant dialogue where the child communicates her abilities and enjoyment and the caregivers listen and adapt to help make the mealtime successful and enjoyable. So, PFD is all of those domains. It is difficult to look at only one when helping children learn to enjoy foods and eat enough.
- It seems that enjoyment of a mealtime is very individualized. What role might more protocol based approaches have in the treatment of PFD?
I think enjoyment, confidence and internal motivation are big goals in supporting children who struggle with eating.
I personally like the word, “guideline” rather than “protocol”. I have almost five decades of experience with a more “guideline” approach that is responsive to the child’s reaction. We offer. The child is able to take that food, or not. If yes, GREAT. If no, we adapt the presentation for success to grade our ask. Was the texture, the bite size, the wetness of the texture too much? Can we adapt for success? When relying on protocols, or teaching protocols to parents, I have found that it can sometimes lead to stricter, less flexible and less individualized interpretations and approach. I have listened to parents my whole career, and many tell me when they were sent home with a protocol, it did not feel natural and was harder for them to implement in the home. We can all contribute. I believe there are many, many ways to support children who struggle to eat and that parent find the approaches that work for them.
Marsha Dunn Klein OTR/L,MEd, FAOTA is a pediatric occupational therapist who has spent a career specializing in pediatric feeding challenges. She received her bachelor’s degree in occupational therapy from Sargent College of Boston University in 1971. She also received a master’s degree in education with emphasis on special education in 1975 from the University of Arizona. Marsha has co-authored PreFeeding Skills editions one and two and Mealtime Participation Guide and Homemade Blended Formula Handbook with Suzanne Evans Morris and Feeding and Nutrition for the Child with Special Needs with Tracy Delaney. Marsha’s new book Anxious Eaters, Anxious Mealtimes: Practical and Compassionate Strategies for Mealtime Peace serves as a great resource for parents and caregivers. She lives in Tucson, Arizona and travels to present locally, nationally and internationally on pediatric feeding issues.
If you haven’t had a chance to watch Marsha’s virtual workshop “Food is Sensory,” you are welcome to participate on demand. It will be available on demand through April, 2020.
- A PowerPoint Presentation on PFD has been drafted and will be piloted with our university partners from all four domains as we work to educate upcoming practitioners on PFD.
- The first completely virtual International Pediatric Feeding Disorder Conference agenda has been established and is now open for registration.
- Our educational resources, including products, texts, articles, and handouts are under construction and expanding. Criteria for resource review and inclusion has been developed to ensure resources are relevant, evidenced based and aligned with our mission.
- A proposal has been finalized and submitted to the CDC advocating for PFD to be a standalone diagnosis.
- Early intervention eligibility standards are under investigation as we build a better understanding of each state’s EI service model.
- We have identified the need for a consensus on assessment and management of PFD. Resources continue to be gathered as we prepare for a formal consensus meeting.
- The prevalence study on PFD is complete and has been submitted for peer review.
- The research blueprint has been finalized. View the Theory of Change to see what is next on the research agenda.
- Therapists will be able to utilize a local network for collaboration and expertise/advice.
- Referrals to the proper healthcare provider will be made more accurately and effectively, thereby decreasing waitlists for medically fragile children.
- Enhanced collaboration through a highly skilled cohort of medical professionals will enable enhanced care.
- Licensed OTR or SLP in good standing
- Currently or previously employed in a pediatric setting
- Strong commitment to professional growth and community partnering
- Statement of commitment: minimum of 4 hours per month to be allocated to collaborative goals
- Attend an in-person LACI launch meeting on October 22, 2019 and LACI conclusion meeting on April 21, 2020 from 4-6pm.
- Attend monthly 1-2-hour virtual LACI meetings for the 6-month cohort period: meetings to be held November 2019-March 2020.
- Engage in at least 2 hours of person-to-person collaboration or self-directed learning
- Contribute related resources and insight on the curriculum topic monthly via the virtual platform
- Complete feedback surveys as applicable
- Scientific Reviews – such as systematic, meta-analysis, or scoping; addressing assessment, management, and/or treatment approaches for domains of PFD: medical, nutrition, feeding skill, and psychosocial. The following list offers review suggestions:
- Assessments used in the PFD field (tools, clinician assessments, and/or tests)
- Therapeutic outcomes and/or approaches for PFD treatment
- Resource utilization or economic studies – cost of PFD from the perspective of the healthcare system and/or the family.
Please consider applying using the information below…General Guidelines and Eligibility:
- Funding up to $5,000 for one year from date of award
- No indirect costs or overhead costs
- United States residents
- Methodology must follow PRISMA guidelines
- Open call for abstracts – Friday, September 27, 2019 (by 11:59pm Pacific Time) *new deadline*
- All dates subject to change due to open call deadline extension
- Request for full proposals to be sent to applicants– Wednesday, October 16, 2019
- Full proposal application due – Friday, December 6, 2019 (by 11:59pm Pacific Time)
- Funding and projects begin – Early 2020
- Contact information (name, email, phone number, and mailing address)
- Qualifications & credentials
- Supervising academic mentor (if applicable)
- Funding priority requesting
- Abstract (400-600 words)
- Research question
For additional information and guidelines, please download the funding guidelines below.
Infants with recessed jaw/ retrognathia present with unique feeding challenges and are sometimes misdiagnosed with ankyloglossia or tongue tie. This is of particular concern, because in some cases a frenulectomy is contraindicated. Although the anterior maxillary and mandible alignment is impacted, the primary concern is the tongue sitting posteriorly toward the pharynx. In severe cases airway obstruction can occur but milder cases also require consideration for airway patency. These babes often present with stridor reflective of increased respiratory effort but when paired with a confirmed diagnosis of laryngeal or tracheal malacia adequate respiratory support needed for sustained energy and coordination for feeding are frequently compromised.
The discrepancy between the maxilla and mandible often cause the nipple and areola to compress with anterior rotation. The position of the tongue can also inhibit elevation and retraction of the posterior tongue needed to recreate adequate inner oral pressure during the suck needed to efficiently draw milk from the breast. These oral mechanics can cause irritation to the nipple or tissue trauma or they have difficulty transitioning off of nipple shields sometimes mistaken as characteristic of ankyloglossia (tongue-tie). Many babes have improved latch in this position as gravity assists with tongue and occasionally jaw forward.
Detection of a recessed jaw can be a bit challenging. Infants naturally have a slightly recessed chin/jaw as part of normal development; however, those that present with a gap of 3 mm or more between the anterior upper and lower gum line often struggle at breast. These infants sometimes have prominent chins with a horizonal crease between the mental region and the lower lip. The lower lip often rests tucked behind the upper lip or superior alveolar ridge. Observation at breast and bottle will also reveal increased facial tension particularly along the lateral orbicularis oris often resulting in a narrow latch as the babe tries to compensate for anterior rotation of the nipple between the upper and lower gum lines. In more involved cases the infant struggles with the extension reflex of the tongue needed for latch stability as gravity pulls the back of the tongue posteriorially.
The good news is that positioning adjustments have proven very helpful, particularly at breast to use gravity to move the tongue anteriorly in the mouth creating additional pharyngeal space. For babies without sternal precautions or poor respiratory endurance I suggest a trial with Mom reclined with babe in prone position (also known as tummy to tummy, laid back or biological position). I find most success with placing a rolled bath towel or narrow end of the Gia or breast feeding pillow at babe’s chest allow them to come down onto the nipple without head extension. The breastfeeding pillow can also provide support through the baby’s hips as they rest in a tucked position in the center of the pillow with the lower inside edge supporting their bottom. It is not uncommon to hear less stridor in this position as a result.
For bottle feeding, elevated side lying with slight anterior rotation at the hips) or high cradle (with hips slightly forward, not directly under the shoulders) can work nicely. These positions also provide nice support for respiration. I personally prefer placing babe in classic football hold but rotate their hips and shoulders so they are “stacked” which also places the babe at a nice angle with space for the bottle and supports lots of yummy eye contact/engagement.
When bottle supplementation is needed, the Playtex Drop In Nurser with the Natural Latch nipple provides nice support along the jaw when the bottle is held at a slight angle to allow the lower edge of the nipple along the lower lip. I typically prefer this bottle/nipple for breast feeding infants to match the gape/latch that compliments oral positioning at the breast. Infants with small gaps between the maxilla and mandible typically show no concerns for breathing. However, infants with wide gaps require careful monitoring. If an infant demonstrates any stress responses in supine, parents report concern for potentially obstructive noises during sleep or the young infant spontaneously moves themselves from their back to side lying a sleep study and/or airway patency assessment should be done by an otolaryngologist (ENT). The infant’s pediatrician needs to be aware of these concerns for consideration of positioning for sleep.Some pediatricians may consider elevated or side lying sleep positioners specifically designed for these purposes. These should only be used under the direction of the physician.
The majority of infants with a slightly recessed jaw outgrow these feeding concerns. At around 3-4 months of age the infant’s neck elongates and the pharynx deepens as the jaw moves forward with facial growth. This brings the posterior tongue slightly forward with increased space allowing for functional tongue elevation and retraction. At this point most infants can transition to more traditional breastfeeding positions.About Allyson Goodwyn-Craine
Allyson Goodwyn-Craine (Ally) began her career in 1989. She is a Neuro-Developmental Treatment (NDT) trained Pediatric Speech-Language Pathologist/Feeding Specialist who has worked in Private Practice, Shriner’s Children’s Hospital, Randall Children’s Hospital, and now at Kaiser Sunnyside Medical Center. Ally enjoys helping medically complex babies and toddlers who struggle with feeding challenges from breast, bottle, and tube feedings to transitioning to solid foods. Ally joins infants, toddlers, and their parents in the NICU, NICU Follow-Up Clinic, outpatient treatment, and as a member of the Cleft Palate team.
Allyson served on the Financial Planning Board of the American Speech-Language-Hearing Association. She is a past president of the Oregon Speech-Language-Hearing Association. She has served on the advisory board and as an adjunct professor at Portland State University for 19 years and is a guest lecturer in Pacific University and University of Oregon graduate programs. She has also traveled nationally and taught as a member of the Education Resources clinical faculty. Allyson was recently awarded the Honors of the Association by the Oregon Speech-Language-Hearing Association.Click here to contact Allyson
Every year, the Academy of Nutrition and Dietetics supports a nutrition education and information campaign called National Nutrition Month®. National Nutrition Month® encourages research through credible, scientific-based food and nutrition information. In addition, it inspires people to make sound food choices, as well as informed physical activity habits.
One of four domains in the coordinated care model encouraging a collaborative approach to pediatric feeding disorder, nutrition is the foundation for growth and development. Whether your child eats by mouth or through a feeding tube, good nutrition allows children to thrive. It directly affects a child’s brain activity and capabilities, fine and gross motor skill development, and overall health and wellness. Poor growth and nutrition for children can lead to lifelong issues and difficulties.
This year, the theme for National Nutrition Month® is “Go Further with Food.” This could mean preparing meals at home, choosing a healthy breakfast or simply picking snacks that are more nutritious. Often, adopting a healthier life style also means less food loss and waste.
That can be difficult for families navigating pediatric feeding disorder. Kristi Meyer, author of the children’s book The Adventures of Team Super Tubie and Professor at Cornell College in Iowa, considers a 504 medical plan meeting with her son’s school an important step. “In addition to the practical questions about who can replace our son’s g-tube if it were to fall out while at school, there are the emotional and social concerns that we, as parents, have in wanting our son to be accepted by his peers, never excluded from activities, yet proud of his differences.”
“In spite of all these concerns,” adds Kristi, “we have also learned there is something very comforting and reassuring about the opportunity to meet face-to-face with his teachers and school nurse whom he will get to know so well and rely on to be his support and safe haven throughout his hours away from home.”
For more information on nutrition and pediatric feeding disorder, visit feedingmatters.org/growth-nutrition.