Category: Team

Happy Holidays from the UNC Feeding Team

Finding Support when you have a child with a feeding problem

 

Feeding difficulty in children is surprisingly common. Research studies tell us that it can occur in 25% of children with typical development and up to 80% of children with developmental delay. (Manikam R1, Perman JA., 2000)  Yet, despite this fact, many parents and caregivers feel isolated and alone when dealing with their child who has a feeding problem.

How do you know if your child has a feeding problem? Check out this  post we did on what a feeding problem can look like.

https://uncfeedingteam.web.unc.edu/2016/06/17/how-do-i-know-my-child-has-a-feeding-or-swallowing-problem/

We often hear from our families and caregivers that having a child with a feeding problem is very stressful for the entire family and they feel isolated and alone. These are some of the things we often hear:

  • Feeling frustrated and sad that your child struggles with feeding.
  • Social activities with other children and play groups are difficult because your child won’t eat what the rest of the kids are having.
  • Going out to eat is impossible because there is nothing on the menu that your child will eat.
  • Fear that your child will experience gagging and vomiting when eating.
  • Caregivers making separate meals -one meal for the family and a separate meal for your child with feeding difficulty.
  • Resorting to fast food for many meals.
  • Feeling pressure from other family members who don’t understand what it’s like to have a child who won’t eat.
  • Feeling afraid that your child will lose weight.
  • Feeling guilty because a parent is supposed to be able to feed their child.
  • Feeling like every one else’s child eats and yours is the only one that doesn’t.
  • Feeling overwhelmed by the cost of feeding therapy or special formula or food needed for your child.

All of these statements and feeling are very real experiences for parents with children who struggle with eating and swallowing. We would like parents and caregivers to know that you are not alone and there is help and support!

How to get help!

  • Feeding Matters: www.feedingmatters.com . This is a parent run support group for families of children with feeding difficulty. You can even request a peer mentor to have someone to talk with.
  • The Feeding Flock: https://feedingflock.web.unc.edu . This is a research team dedicated to partnering with families to nurture children with feeding difficulties. Families are invited to join the face book group.
  • Pediatric dysphagia: babies with swallowing/feeding difficulties. This is an active  face book group for parents of children with swallowing/feeding difficulty.
  • Feeding Tube Awareness : http://www.feedingtubeawareness.org was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention.
  • Talk with your feeding therapist about connecting you with other families with similar experiences.
  • Talk with your feeding therapist or family doctor about recommending a family psychologist that can help with the stress and difficulty of caring for a child with feeding and swallowing difficulty.

Welcome to Holland

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Sometimes, you hear things that really stick with you. I thought I would share one of those things for me, with all of you. If you are a parent of a patient followed by our Feeding Team, you understand the struggles in a variety of different forms, of caring for children who will not or cannot eat. It is so very hard and so very complex. It is not what you thought it would be. It can rock you to your core. It can make you question everything.

Sometimes, it is good to take a step back and tell you that we understand. We know this is a hard place to be and we are here to help. You are not alone in this struggle. Whether you have a child who has actually been diagnosed with a “disability” or not, enjoy this beautifully written article and find hope.

WELCOME TO HOLLAND
by: Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So, you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

c1987 by Emily Perl Kingsley. All rights reserved.

When Purees Have a Purpose: Part 2

 This blog post is a follow up to the previous post discussing how to successfully manage your child on pureed diets. This post will address many of the practical questions that are asked along with some “pearls” provided by our parents. We also wanted to provide you with some tasty, nutritious recipes to get you started. Enjoy!

“Where do I start with purees? What kind of blender should I buy? “

Blender Cost General Information
Blendtec® HP3 blender Range from 300.00 refurbished to 700.00 professional series new www.blendtec.com (800) 253-6383-there is patient assistance program available for this.
Vitamix® Wide range of 400-700.00 Inquire about Medical Needs Discount Program which is available to all eligible candidates at (800) 848-2469 or email: household@vitamix.com reference code 07-0036-0011

 

There are also refurbished models that are less expensive

Ninja Kitchen System Plus Average 75.00 (varies per site) Some come with storage/pureed recipes
Oster Immersion Blender 19.00 Per parent report one with a flat blade tends to puree best
Beaba Babycook 95-120.00 (varied per site) Baby food machine and cooks and purees-holds 2 ½ cups at one time
NutriBullet (also a Magic Bullet) Varies 75-120.00 Contains attachments and storage containers

Parents often ask us whether they need to buy the more expensive blenders to make effective purees. Our parents have given us great feedback and have found this not to be true. In fact, the primary inpatient intensive feeding program we often work with typically use the Immersion Blender which is the least expensive option.

 

“A lot of foods on the pureed diet look bland and boring and don’t seem to contain much nutrition. My child needs to gain weight. How can I achieve this? How can I add calories and protein to a pureed diet?”

TYPE OF FOOD           AMOUNT     CALORIES
Liquid fish oil (adds omega-3s) 1 tsp 40
Canned tuna/salmon (adds omega-3s) 2 ounces 60
Chia seeds 1 Tbsp 60
Boiled lentils 1/4 cup 60
Boiled Egg 1 70
Ground Beef or Chicken 1 ounce (3 oz is “palm of hand”) 70
Cooked oatmeal 1/2 cup 75
Avocado 1/4 mashed 80
Greek Yogurt 6 ounces 100-150/ 13 gm protein
Cooked Brown Rice or Quinoa 1/2 cup 110
Almond/Peanut Butter 1 Tbsp 100
Butter 1 Tbsp 100
Raisins 1/4 cup 55 (also great Iron Source)
Sweet potato 1/2 cup 70
Hummus ¼ cup 10

Written by Sharon Wallace, RD, CSP, LDN

Interdisciplinary Team

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Hello readers!

Today, I wanted to take the opportunity to define a big word for everyone! Interdisciplinary. Big long and kinda intimidating! Our great google search engine found this for me as a definition: “a team a group of health care professionals from diverse fields who work in a coordinated fashion toward a common goal for the patient.

Why is this important?

You may also hear the word, “multidisciplinary” – also a very long and kinda intimidating word. But it’s meaning is very different. That same lovely search engine helped to also define this big ‘ole word: “a group of health care workers who are members of different disciplines, each providing specific services to the patient.”

When you come to see the UNC Feeding Team, you will see three different disciplines who work together to provide a common goal to our patients…in other words…we do not work in a vacuum. We truly use the expertise each provider brings to the table to formulate a plan together.

What does this look like in practice? From the medical provider perspective, I will share an example.

Patient A has been seeing our team for 6 weeks. I have started the patient on a reflux medication and our dietitian has started him on a formula that is far easier to digest than previous. All three disciplines gather in the room for a follow up with the patient. A’s parent reports that he is no longer vomiting and is stooling regularly, at least twice daily. He has taken more volume of food at each sitting since adding in more purees (see previous post) but has really not expanded his diet to accept a greater variety of foods and flavors.

The speech therapist then moves forward with feeding the patient for her portion of the visit. Following her therapy session, she comes to both myself and the dietitian and says, “He did a great job opening his mouth, he was not exhibiting any obvious symptoms of reflux and did not gag. However, he was not interested in the food. He did not seem hungry.”

We then have a discussion and decide together to start the patient on a medication for appetite stimulation and recommend adding a high calorie additive (butter and/or cream if the child is able to tolerate dairy) to enhance flavors of puree. I prescribed the medication, the dietitian makes recommendations for the additives and the speech pathologist recommends behavioral strategies to combat any potential refusal to eat.

This example helps to illustrate our team approach. We do not go into patient rooms individually and offer suggestions only specific to our expertise. We pull on the vast knowledge of our colleagues who, together with our knowledge, can provide true best outcomes for our feeding kids.

The UNC Feeding Team is just that, a team…and if you want to get technical…call us interdisciplinary…

How Do I Know if My Child Has a Feeding Problem?

How Do I Know My Child Has a Feeding or Swallowing Problem?   

Feeding problems can come in all shapes and sizes and can affect a child at any age from the premature infant to the young adult. Some caregivers aren’t sure if their child has a problem but feel that feeding their child is difficult or stressful.This can be a very frustrating and lonely problem to have but there are many things that can help your child be a successful feeder!

What Does a Feeding or Swallowing Problem Look Like?  

  • Difficulty with bottle or breast feeding. This could be poor latch to the nipple, difficulty maintaining latch, or frequent pulling off the nipple.
  • Crying, irritability or seeming uncomfortable after a feeding.
  • Infant who eats better while asleep.
  • Difficulty controlling liquid or food with spillage out of the mouth while eating.
  • Food or liquid coming out the nose while eating.
  • Coughing or choking with liquids or solids.
  • Swallowing food whole instead of chewing.
  • Holding food in the cheeks or spitting out food instead of chewing and swallowing the bite.
  • Extreme picky eating, eating only carbs, or refusing entire food groups such as fruits, vegetables, and proteins.
  • Eating the same foods every day and refusing to try new foods (having to make your child a different meal from the family).
  • Gagging or vomiting during or after meals.
  • Not eating enough to gain weight and thrive.
  • Grazing or eating only small amounts frequently.
  • Difficulty moving from bottle or breast feeding to cup drinking.
  • Need for a high calorie supplement or tube feeding.
  • Difficulty swallowing which might appear as choking, coughing or frequent respiratory infections.
  • Allergies or intolerance to foods.
  • Not eating due to complaints of stomach ache or pain.
  • Poor appetite, never hungry, skips meals.

 

What Can I Do To Help My Child?  

Start by talking with your pediatrician or primary care provider. They can look at your child’s weight and growth and help you determine if your child would benefit from seeing a feeding team or feeding specialist. Talk with your provider about your concerns. It may be helpful to bring a food journal of what your child is eating and drinking over 3 days. This may help identify problems and illustrate your concerns.

 

Trust Your Instincts- many of our parents tell us they had concerns long before they were referred. if you are concerned about your child’s eating and/or growth, ask your doctor to refer your child for a feeding and swallowing evaluation. Most children are best served by starting with a feeding team but if you do not have a team near you, there are many professionals that help children with different types of feeding problems including:   

  • multidisciplinary feeding team (usually found in a children’s hospital)
  • a speech pathologist, occupational therapist, and in some cases physical therapist
  • a developmental pediatrician, gastroenterologist or nurse practitioner
  • registered dietitian
  • psychologist

 

If you are concerned about your child, you will never regret having an evaluation, even if the clinician or team tells you everything is fine.

 

Getting Help

 

There are many things that can help your child be a successful feeder! This might involve medical and nutritional management, testing in some cases, and feeding therapy.

Our New Medical Director

We are pleased to welcome Dr. Rose Marcus, a board certified Pediatric Gastroenterologist, as the new Medical Director of the UNC Feeding Team. Dr. Marcus comes to us with a wealth of experience in the sub specialty of gastroenterology and interdisciplinary program promotion and development. We welcome her expertise as a leader in furthering our presence and participation in meaningful research and best practice that will advance the field of pediatric feeding. She is enthusiastic, caring, intelligent and motivated, all characteristics that will greatly benefit our team and our patients.

Here are a few more facts about Dr. Marcus:

After earning her medical degree from the University at Buffalo in New York in 2000, she completed her Pediatric residency in 2003 and Pediatric Gastroenterology fellowship in 2006 at The Children’s Hospital of Philadelphia. She also earned her Master of Science in Clinical Epidemiology from the University of Pennsylvania School of Medicine in 2006.

Dr. Marcus has specific expertise in pediatric intestinal failure and short bowel syndrome having initiated and established the multidisciplinary Pediatric Intestinal Rehabilitation Program at The Children’s Hospital of Philadelphia.

During her subsequent tenure at Mission Children’s Hospital in Asheville, North Carolina, she provided medical leadership for patient safety and process quality improvement in pediatric endoscopy and participated in the Child Health Accountable Care Collaborative, Community Care of North Carolina multidisciplinary team development of statewide, evidence-based primary care treatment guidelines for pediatric constipation, gastroesophageal reflux, and functional abdominal pain. She considers teaching to be a privilege and enjoys participating in medical education of students, residents, fellows, nurses, and other allied health colleagues.

In her words: “I am pleased to be joining this talented group of professionals to collaborate and help advance and achieve their clinical and research goals at the local, regional, and national level.”

We are delighted to have her on board! Please join us in welcoming Dr. Marcus if you have the pleasure of seeing her in clinic.

Expectations for Your First Visit

As a team, we thought it would be helpful to outline what you can expect for your first visit with the UNC Feeding Team.

First things first: parking at the NC Children’s Hospital takes a lot of patience and time.  Please prepare for both, by leaving your house 30 minutes earlier than you would typically to come to Chapel Hill. Please park in the visitor’s deck and know that you will walk across a sky bridge to the front of the Children’s Hospital.  You will then ask whomever you first see to direct you to the Outpatient Specialty Clinics on the ground floor.  You will then receive a ticket for a number, you will wait until that number is called, and you will then be checked in for your appointment.

You will then be directed to a waiting room. The waiting room has sand tables for kids, televisions and magazines.

You should wait about 15 minutes to come back to the clinic to get checked in by our nursing staff.  This is our goal.  We appreciate your time very much and will do our very best to run on time and to give you the courtesy of a “check in” by our nursing staff if we are running late.

In the event we are running behind, some parents have found it helpful to bring along some of their child’s favorite toys or travel activities.

Once checked in, the nurse will take your child to be weighed and measured in a small “check in” area in the front of our specialty clinics. One this task is completed, you will be taken into an exam room.  Your provider will then be notified of your readiness to be seen.

This first visit will take approximately two hours.  Please come prepared for this duration.  It is imperative that you bring food to this visit, as we are a feeding team, with the goal of assisting you and your child in a better way of eating and enjoying mealtimes together which we cannot do without watching your child eat.  We ask that you bring a food your child prefers, one he or she does not prefer and one that you would like he or she to eat.  We do have a microwave, but this is not in the exam room and takes extra time to prepare.  Foods that do not have to be warmed are best.  Please also bring spoons, cups, bottles and nipples – anything you use to feed your child.  We do have a variety of different supportive seats (highchairs) for your use.

You will meet with all three disciplines, including pediatric gastroenterology, pediatric speech/language pathology and pediatric nutrition.  Because there are three disciplines and we are a teaching hospital, the small rooms can become a bit cramped.  We try our best to accommodate for this by rotating time spent by each discipline in each room.  Each provider gathers information necessary to complete a holistic feeding history for each individual child.  We will ask questions, beginning with prenatal history, extending to the current day of the visit.  All of the information is important in building our plan of care as a team.

You can expect that we will discuss medical management.  We are a medical-behavioral program.  We believe in treating underlying GI issues and ruling out GI disorders before moving on to teaching children to eat.  We use medications and formulas to prepare the GI tract to be the most comfortable and prepared to receive and absorb nutrients for proper growth and development.

Because each patient is different, each plan of care is different.  Your child may have lab work done on the first visit. Your child may have an abdominal x-ray done on the first visit.  You may be asked to start your child on a new medication to treat reflux or constipation, two of our most common medical ailments in children with feeding difficulties.  You may be asked to switch formulas and feeding schedules through your child’s gastrostomy tube.  We may talk with you about additional procedures or referrals.

The first visit can be overwhelming, as there is a lot of information shared and interpreted, with new plans of care initiated.  We welcome your questions during the visit and following.  We will provide you with direct contact to our nurses and schedulers, who can readily reach us and allow us to communicate with you regarding any questions you may have.

Our follow up visits are typically about 4-8 weeks out with frequency determined by severity of feeding problem.