Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding Tube Weaning’ Category

April 11, 2018

Heidi Moreland featured in Pediatric Feeding News

Check out this weeks Pediatric Feeding News blog post here! Our tube weaning clinical coordinator, Heidi Moreland, is discussing the development of self-regulation and the implication it has for our tube-fed children.  She notes that it is important to view self-regulation as a global skill that needs to be developed, rather than something that is simply present or absent in eating.  She also gives some tips for clinicians working with children and eating, particularly those who are tube fed.

 

February 12, 2018

Happy Mealtimes and Healthy Eaters: Four Things Every Parent Should Know

By: Jamie Hinchey, MS, CCC-SLP and Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

“Isn’t my job to make them eat healthy?”: It is often forgotten that children and parents both have their own roles to play during mealtimes. Ellyn Satter describes the Division of Responsibility (sDOR), which breaks down the different roles between parents and their child.

  • Parents control the what, when, and where of feeding
  • Children determine the whether to eat and how much.
  • Providing limits while being supportive with food can be a difficult balance for families, but it is a worthwhile goal
  • Children should be allowed to explore food, but also able comfortable with saying “no”.
  • It is okay for caregivers to say “no” to certain behaviors and request and set certain boundaries during mealtimes, especially as your child matures.
  • Be intentional about allowing them to develop independence with self-regulation.
  • It may be helpful to focus on something else during the mealtime instead of paying too much attention to your child’s eating. This could be a great time to talk about your day, focus on building communication opportunities, or using the mealtime as a social gathering for the family.

Restricting “Bad” Foods + Pressure To Eat “Good”: “Does it add up to healthy eating?”: As a parent, you want your child to grow and develop. Part of this is can be accomplished by eating healthy and nutritional foods. Although you may want to push the “healthy” foods on your child during mealtimes, this pressure to eat certain foods can cause a decrease in interest. In fact,

  • Take a second look at labels: Look past advertisements such as “low sugar”, “fat free”, and “low carb”. You may be surprised at which foods might be labeled “bad”, but are full of nutritional value.
  • Model healthy eating: Children learn the most about food through the direct experience of observing others eating while eating (Savage, Fisher, & Birch, 2007). That means it is more meaningful to model a healthy diet for your child rather than it is to restrict “bad” foods.
  • Avoid the reverse effect: Research has found that when parents restricted certain foods, the children’s intake of those foods actually increased and put them at risk for excessive weight gain (Birch, 2014).
  • Trust your child to eat the right amount – they know better than you do: Katja Rowell shares in her book, Love me Feed Me, that when children are allowed to eat to “treat” foods such as high sugar foods, they are able to respond to body cues that regulate when their body needs to eat and when they are full. However, when adults interfere by restricting that type of food, it inhibits their ability to learn and respond to cues about how much their body needs.

The Hidden Danger of “Is This On My Diet?”: In today’s society, it is difficult to watch television, read a magazine, or go to the grocery store without hearing about a new diet or a “health fad”. This makes it almost impossible for anyone to feel good about food they are buying or eating.

This may feel like a healthy change, but can it actually be causing more harm. Surprisingly, emotions around food can have a number of negative consequences.

  • The way you think and feel about food impacts not only your enjoyment of food, but also your absorption of nutrients (Crum, 2014.)
  • Your feelings about foods impact family discussions about food. Many parents find that negative or conflicting emotions about food can make it difficult for them to talk about food in positive ways in front of their children (Lytle et.al. 1997).
  • Even at a young age, children are able to pick up on the discussion around food. Although they may not understand complex nutrition talk, they are aware of the focus on “unhealthy” vs. “healthy” foods and conflicting emotions around foods. As they process those emotions through their own lens, this may result in conflicting emotions around food and their bodies. For example, when the focus is “healthy” or “unhealthy” food, children may feel pressure to eat a certain food or feel ashamed for wanting to eat a “treat”.
  • Instead of focusing on discussing or dissecting food in front of your child, take that focus into meal planning and serve a variety of healthy foods that you enjoy.
  • Use mealtimes to have conversations with your child. You can talk about foods you enjoy. If it is interesting, you may also want to talk about how to cook the food, where the food came from, or different types of food that are similar.

Eating Together/Social: “It’s Time for Dinner”: Children develop early patterns around mealtimes through social interactions surrounding feeding (Savage, Fisher, & Birch, 2007). The Family Dinner Project, a nonprofit organization operating from the offices at Project Zero at Harvard University, lists many benefits to having a family mealtime. What they found is that even if it isn’t always possible, it is important to try to make time within your weekly routine to share a mealtime with your child.

  • Children who are part of regular family mealtimes have lower rates of substance abuse, higher self-esteem, and lower rates of obesity and eating disorders.
  • Family mealtimes provide an opportunity for kids to watch their parents and siblings eat, which can provide a foundation for more adventurous eating later
  • A study by Brown & Ogden (2004) found that family modeling has a more lasting influence than control at meals.
  • Family mealtimes allow children to be a part of a routine, see food as an enjoyable, social opportunity, and build exposure to a variety of foods, even if they don’t eat them the first time they are served.
  • Mealtimes aren’t just about nutrients begin consumed. They can also be about caring for others through preparing food, participating in social interactions through staying at the table and being part of conversation, and contributing to the family by completing mealtime chores.

Sources:

Brown, R. and Ogden, J. Children’s eating attitudes and behaviour: a study of the modelling and control theories of parental influence. Health Educ. Res. (2004) 19 (3):261-271. doi: 10.1093/her/cyg040

Crum, Alia and Corbin, William. ” Mind over Milkshakes: Mindset, Not Just Nutritents, Determine Ghrelin Response” Health Psychology (2011): 424-429

Rollins, Brandi Y., Loken, Eric, and Leann L. Birch. ” Effects of restriction on children’s intake differ by child temperament, food reinforcement, and parent’s chronic use of restriction” Appetite ( 2014): 31-39.

Rowell, Katja, MD and Jenny McGlothlin (2015). Extreme Picky Eating.

Rowell, Katja, MD (2012). Love Me, Feed Me. A Parent’s Guide to Ending the Worry about Weight, Picky Eating, Power Struggles and More. Family Feeding Dynamics LLC. St. Paul, MN.

Savage, Jennifer S., Jennifer Orlet Fisher, and Leann L. Birch. “Parental influence on eating behavior: conception to adolescence.” The Journal of Law, Medicine & Ethics 35.1 (2007): 22-34.

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January 31, 2018

A Family Mealtime Coach: How can we help?

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

We all want our kids to be the best that they can be.  In fact, many families hire coaches to pump up their kids’ soccer game, to improve their free throw shot, or to work on their ballet positions.  But a baby?  An eating coach?  What exactly does a family mealtime coach do? Throughout coaching, therapists use reflective to help caregivers gain insight into a problem or situation.

Even if a feeding therapist is recommended to work on your child’s skills, we often see that mealtime interactions, expectations, and stress have a greater impact on meals than skills.  Parents need help with defining their own role and their child’s responsibilities at mealtimes. This balance is what will allow the child to advance their self-regulation skills without allowing them to try things that are unsafe, or inappropriate.

The job of a mealtime coach is to teach parents to be aware of their own impact on the mealtime relationship, to help them read their child’s cues, and to empower them to determine the right amount of support for their child. 

What does a Spectrum Pediatrics coach do?

Our goal is to help you develop healthy mealtime interactions with your child, instead of expecting meals to look like feeding therapy

  • We will listen first, to understand the whole problem.
  • We will work with your family to determine the root causes of the difficulties.
  • We will build on strengths to improve mealtimes.
  • We will collaborate with your family to create solutions that will work in your home or circumstances.

If you’re interested in learning more about how a mealtime coach could help your family, we would love to hear from you. Spectrum Pediatrics currently has therapists in Virginia, Tennessee, and New York. We are also able to coach remotely from a different state. Contact us here!

January 29, 2018

Feeding Tube to Family Table: How does that work?

Did you ever wonder why feeding therapy doesn’t look anything like the meals you hope to have?  We did too!  At Spectrum Pediatrics, we believe that tube-fed kids need to learn to eat in the same safe way that other kids learn to eat, utilizing the same principles of healthy eating that are good for everyone.

Meet Jennifer Berry and Heidi Liefer Moreland, as they introduce the philosophy behind the Spectrum Pediatrics Tube Weaning Program.  Watch as they explain how a healthy relationship with food that is shared by the whole family leads to freedom from tube-feeding, enjoyment at mealtimes, and lifelong healthy eating habits.


 

Want to learn more about the people who work with the children in the tube weaning program? Click here to meet Jennifer, the owner of Spectrum Pediatrics, and here to meet Heidi, the clinical coordinator of the tube weaning program. See our Tube Weaning Program featured in the New York Times here.

 

December 11, 2017

From the Other Side of the Table: Giving Up Control with Feeding

By: Hannah Reid, Rusty’s Mom

Life with a tube-fed child is often chaotic and stressful. Each week is punctuated with doctor’s appointments, in-home therapy sessions, and medical supply deliveries. Amidst all of the chaos, it can be comforting to seek control anywhere you can find it. For me, I was able to find control in what went through my son’s tube each day. To add to this, some of his doctors were incredibly fixated on numbers. In a way, it was a huge relief to have something concrete to focus on. I knew how many calories my son needed every day, how many ounces he needed per feed, and the rate the formula needed to be pumped into his stomach. This was all simple math that helped me feel a little bit of calm in the storm that was a medically complex child, dependent on a feeding tube.

Fast forward many months and we had a tube free superstar! Within days of starting our feeding therapy program, my son had weaned off the feeding tube completely. This was truly amazing, I felt like simultaneously crying tears of joy and pinching myself every time we sat down and enjoyed a meal together. However, I no longer had ounces to divvy up, calories to count, and feeding rates to program into a feeding pump. The one area of my life that I had been controlling for so long was now officially out of my control. And for the best possible reasons! But this was pretty tough to come to grips with. I imagine many other parents are in a similar position when it comes to feeding their children (even for kids who haven’t been tube fed in the past). I thought it might be helpful to review how I was able to finally give up control and fully trust my son on his new journey as a foodie.

Ditch the Numbers!

Weeks after tube weaning, I was still obsessing about numbers. I had a little notepad that sat behind our kitchen table and I wrote down how many ounces my son took in and estimated calorie totals at the end of each day. This was probably my last ditch effort to maintain control over something, and, because I’d been so fixated on numbers for so long this felt natural. However, it quickly became useless as my son’s eating fluctuated incredibly from day to day. And the thing was: the number on the scale at the pediatrician kept creeping up. He clearly knew how to listen to his own body’s cues and I needed to respect that as well. The day that I decided to finally throw out that notepad I felt like a totally new person. Freedom to trust, and freedom for my son to eat whatever he desired!

Focus on the Child

Once I was able to kick the notepad habit to the curb, I was able to focus more on my son and his cues. Was he happy? Developing and learning new skills? Having a few wet diapers each day and tears when he cried? The answer to all of these were always YES! In the first two months after tube weaning my son went from barely knowing how to sit on his own to rolling everywhere, crawling, and pulling to stand. He was also so much happier, and exploring his own world in so many ways thanks to his new exposure to food and my new ability to let go. Whenever I started to doubt him, or myself, I would get down on the floor and play with him and notice his incredible zest for life, the biggest indicator I needed to tell me that he was doing just fine.

Seeking Stability and Regaining Other Types of Control

As my son was no longer dependent on the tube, our weekly schedule calmed down significantly. Almost immediately we no longer had a need for medical supplies or certain doctors. We also didn’t need all of the in-home therapies we had been getting in the past to help him eat, because he was now an eater! Many of the daily interruptions that made our lives feel so out of control and chaotic were just GONE. And with this, I began to regain control of our lives. Yes, I wasn’t controlling my son’s intake or his calories, but I was controlling how we spent our days. Instead of driving to the GI doctor, we could go to library story hour. Instead of waiting for feeding therapy, we could visit the local farm and pet the cows. These were all things that we wanted to do together, and this re-instilled a feeling that I had a bit of power in what was going on in our lives again.

It certainly wasn’t easy, and it definitely took time, but the above steps helped me to say goodbye to the feeding tube that lingered in my brain, long after we had stopped using it on my son’s stomach.  And when we have the occasional hard day or illness, I do my best to remember back to how I relinquished control over feeding when it felt like I could think of nothing else. I ditch the numbers, focus on my child, and seek stability in other areas of our life. Because in the end, he is happy and thriving, and it’s just as important for the parents to be happy and thriving, too.

October 24, 2017

Responsive Feeding: Do they always have to sit in the chair?

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

Parenting can be tough, and it is easier to find some exact guidelines on how to help your child, or how to get them to “do the right things.” Responsive feeding is a great structure, but it can feel like there are a lot of gray areas when it comes to application.

Picture helping your child learn to walk. In the beginning you hold them upright, and even help them move their feet! As they mature in their skills, you progress to holding two hands, holding one hand or, just using a finger. Eventually, you let them walk to your outstretched hands and you catch them if they wobble. Sometimes you need to let them land on their booty in order to allow them to develop their balance independently. Once they are running on the playground by themselves, you will probably forget all of the months of practice and many steps that you went through! You can apply the same idea to other skills. Rather than giving some exact guidelines on questions such as the wisdom of making your child sit in the chair and other mealtime conundrums, here are some questions to ask yourself to help guide your reactions in the gray areas of the mealtime relationships.

Enjoyment

1. What does my child think about food (or drinking) right now? How do they communicate this?

2. What does my child think about family mealtimes (or bottle times) right now? How do they communicate this?

3. Is his or her response to mealtimes different than other areas of structure? (For example, 2 year olds often do not like to be confined, and would rather explore than eat. This does not necessarily mean that he doesn’t like food, but may dislike sitting for more than a few minutes.

Abilities

4. What do they do at about 80% of mealtimes with ____________ ? No one is 100% at anything, especially toddlers and preschoolers, so 80% is a pretty good measure of mastery. This can be any skill, such as drinking from a cup, sitting at the table, using a spoon, or just taking bites without spitting them out. It can also be behaviors, manners, and food challenges like sitting at the table or tasting new foods.

5. What do I hope they will do at mealtimes?

Shaping rules and expectations

  • If you do an assessment of their enjoyment and find that there is no enjoyment at all, you may need to back up your expectations until they are more relaxed at mealtimes.
  • Once you have some enjoyment of food and mealtimes, you can begin adding structure a little bit at a time.

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October 20, 2017

Spectrum at NPC-QIC: Lessons from a Tube-Weaning Program

Our wonderful feeding therapist and clinical coordinator of our Tube Weaning Program, Heidi Moreland, is presenting at the National Pediatric Cardiology Quality Improvement Collaboration conference in Chicago this weekend. Throughout this presentation, Heidi discusses the philosophy behind Spectrum Pediatrics tube-weaning program and provides a glimpse into what the program looks like for children and their families!

Check out Heidi’s presentation here along with helpful resources for the tube-weaning program:

References for Spectrum Pediatrics Treatment Program

Spectrum at NPC QIC Presentation

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August 23, 2017

What is Responsive Feeding?

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

Responsive Feeding: Mealtime guidance that depends upon the feeder’s ability to read the eater’s cues in order to make the meal manageable, enjoyable and successful for the eater, without giving up developmentally appropriate structure and expectations.

Every parent has a parenting style which is formed by their own personality, the way their own parents interacted with them, the community in which they live, and how the child’s personality responds and interacts to that style. Their interactions are characterized in part by how they respond to their kids and their views on how to set limits, with some parents leaning more towards being more permissive, others towards being more authoritarian.

The truth is that both responsiveness and limits are important. Responsive parenting includes a balance between being the authority, while still recognizing their children’s cues and responding positively to them. Parents acknowledge the child’s needs and desires, and may provide developmentally appropriate reasons for the rules, but have high expectations for their kids and expect that rules will be followed. Research has shown that kids of responsive (also called “authoritative”) parents have higher levels of attachment, are more secure and have more self-control.

This role evolves over time. When children are infants, the parents’ primary job is to notice the child’s needs by responding promptly. However, in order to mature past the demanding nature of infancy, children need to develop the ability to safely and successfully interact with a changing world independently. This means that parents can’t just respond to the child’s needs and expect them to mature, they must also teach their child to cope with stress and novelty (Landry, Smith, and Swank, 2006) by allowing them opportunities to be independent, even if they struggle a little. This should look different for each child and family, and your expectations should change over time as your child matures, but it will continue to follow the same process.

This style of parenting seems to work well for developing healthy eaters. Most research that looks at parenting style and eating finds that kids of responsive (authoritative) parents are more likely to develop self-regulation, be less picky, and have less food battles than parents of authoritarian or permissive styles.

Most parents do this naturally in many areas, but struggle with applying this to the mealtime relationship. Check in next week for a little bit more on how this applies to feeding and the mealtime relationship.

Sources:

Darling, N., & Steinberg, L. (1993). Parenting style as context: An integrative model. Psychological bulletin, 113(3), 487.

Hughes, S. O., Power, T. G., Fisher, J. O., Mueller, S., & Nicklas, T. A. (2005). Revisiting a neglected construct: parenting styles in a child-feeding context.Appetite, 44(1), 83-92.

Landry, S. H., Smith, K. E., & Swank, P. R. (2006). Responsive parenting: establishing early foundations for social, communication, and independent problem-solving skills. Developmental psychology, 42(4), 627.

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August 18, 2017

Feeding Friday: Tube-Free Superstar Rusty

Rusty was born full term, yet had many complications during his hospital stay such as noisy breathing, poor feeding, and poor growth. Rusty was initially breast fed, but due to difficulty with weight gain, Rusty received an NG tube for primary nutrition at 1 month old due to concerns of aspiration. Rusty then was diagnosed with significant retrognathia and has mandibular distraction surgery in July at 2 months old. Although his breathing improved, Rusty continued to have difficulty with feeding. While at home, Rusty’s parents continued with tastes of puree and allowed Rusty to explore with solid foods through the baby-led weaning approach. Although Rusty did well with eating for a few weeks, his parents observed more crying and refusing feedings. His oral intake dropped and he again had difficulty with weight gain. Rusty received a G-tube in September when he was 4 months old. After this G-tube placement, Rusty would take a few bites from the spoon, but relied 100% on his tube for nutrition and hydration. During the time prior to the tube wean, Rusty was diagnosed with DiGeorge Syndrome, also known as 22q syndrome. He underwent brainstem decompression surgery at 7 months old.

Following multiple failed attempts to increase oral feedings via different methods, Rusty’s family decided to do a supported tube-wean. His journey started at 9 months old with the team at Spectrum Pediatrics at the Virginia location. Due to Rusty’s history with aspiration, his swallowing was closely monitored and the first few days of treatment focused on allowing Rusty time to explore and demonstrate interest in food. Rusty’s parents describe him as a generally happy baby and he could not have been happier to be in a new place and meet new friends! Rusty initially showed interest in pouches and reaching for foods that his parents were eating such as crackers and bananas. Rusty quickly learned to love to eat oatmeal for breakfast while his mom spoon-fed him. Rusty also demonstrated a need for independence, he loved to munch on puffs, cheese crunchies, and strawberries. Rusty quickly learned how to drink independently from a pouch and eventually a straw cup with milkshakes and smoothies!

Rusty also started to enjoy home made meals that his parents ate as well, such as Dad’s butternut squash soup! Rusty slowly started to trust food and learn how great it made him feel! Rusty was eating enough by day 4 of treatment to discontinue his tube use. Rusty worked very hard to learn how to finger feed himself, drink through different cups, and swallow purees and liquids. Rusty started to show clear cues to his parents during mealtimes such as pushing away the food when he was all done and reaching for his cup or the bowl when he wanted more.

During his transition home, Rusty was happy to be back having mealtimes with his older brother. Rusty quickly learned to eat various foods and became a more competent and confident eater. Rusty started to learn what he needed to make him feel good, as he continued to learn how to crawl, cruise around, and take a few steps independently. Rusty now loves grilled cheese, kielbasa, meatloaf, roasted broccoli, peanut butter toast, and smoothies! These are just a few of Rusty’s favorite foods, but he loves a wide variety of food now. During the past summer months, his family learned that he loves to eat ice cream straight from the cone and strawberries straight from the patch!

 

Rusty recently had his G-tube removed. We are so proud of Rusty and all of the things he has accomplished! Congratulations Rusty on being a tube-free superstar!

Photos provided by Rusty’s family.

August 11, 2017

Feeding Friday: Tube-Free Superstar Caden

Caden was born 37.5 weeks, with a birth weight of 6 lbs., 4 oz and was a described as a “fighter from birth” by his family. He had an extended hospital stay following a heart surgery and respiratory complications. He had significant reflux, and received his G-tube prior to discharge home at almost 2 months of age. By the time he was discharged home, he was not sucking and there was concern that any oral feeding attempts were burning additional calories. Caden’s family worked very hard over the course of the next few months to get him to eat and drink by mouth as his medical status stabilized. He would take small sips or bites of foods while distracted or tricked, showing his family he was capable however; he eventually stopped eating all foods he previously showed interest in.

Following multiple failed attempts to increase oral feedings via different methods Caden’s family decided to do a supported tube-wean. His journey started at 10-months old with the team at Spectrum Pediatrics at the Virginia location. On the first few days of treatment, the focus was to give Caden space to explore and initiate eating while his family decreased pressure to eat. Caden showed increased interest in some foods he ate previously like his grandmothers meatloaf by eating small bites and picking pieces up to throw them on the floor. Caden was curious but unsure about food during the first few days of treatment. He slowly became more comfortable putting more pieces in his mouth instead of the on floor but was very reluctant to allow his family to help him. To his families surprise he soon started enjoying milk at meals too! At first, he let a lot of the milk fall out of his mouth but eventually he used his straw cup with greater efficiency to swallow liquids and keep his clothes dry. By day 5 of treatment, he was drinking enough milk and taking small amounts of purees and solids to discontinue his tube use. Eventually, he began drinking yogurt pouches and found a new love for fettuccini and alfredo sauce. Caden worked hard learning how to use his hands to get enough food in his mouth eventually allowing his family to help him with a spoon too! He started to communicate at mealtimes by using reaching, new sounds, and screams to get what he wanted. He also got much better at letting his family know he was finished at a meal. In the weeks following he continued to build his skills and became very fast at eating his favorite foods.

Now just a few months after his 10 day intensive treatment, Caden loves mini pancakes, alfredo (of course), chia pudding, veggie straws, oreo cookies, and trying to steal whatever his older brother is eating. His favorite activities are dancing to “Hand Clap” by Fitz and the Tantrums, playing with Tupperware containers, climbing everything, and yelling “mamamamamama!”

Caden celebrated his first birthday, learned how to walk, and was able to get his G-tube removed. We are so proud of Caden and all the things he has accomplished, he is a tube-free superstar for sure!

Photos provided by Caden’s wonderful family!