Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding’ Category

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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October 4, 2017

How does Responsive Parenting Apply to Feeding?

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

The mealtime relationship is extremely dynamic and should evolve over time. In the beginning, the parent’s role is more permissive and supportive with food. Children are allowed to explore and branch out. This allows their tentative interests to develop and stabilize. However, we have found that being too permissive can actually lead to pickier eating and more mealtime “stand-offs,” and even impact weight gain. We also know that being too authoritative or involved can also lead to refusals and difficulty with self-regulation.

We realize this is a hard line to walk. Here are a few thoughts to help with this process.

• The child should be comfortable with saying “no” to foods if they aren’t hungry or don’t feel safe, without fear of reprisal.

  • Learning that they are loved despite the fact that they said “no” is extremely important. However, it doesn’t mean that they shouldn’t experience the consequences of “no,” such as being hungry.
  • They may show interest or refusal in a variety of ways that will change over time. You will need to pay attention now and as they mature.
  • If the child is consistently refusing, the adult may need to re-consider the environment or expectations, so that they are both appropriate and achievable.

• The adult should also be comfortable with saying “no” to behaviors and requests

  • If the situation isn’t safe, it is always appropriate for you to set limits. Playing with knives, standing on the table, or eating non-food are clear examples of appropriate limits. There are others that are less clear, but still important. Eating only at the table is a tricky one, but if that is the rule, it is important to reinforce it.
  • As hunger and trust are more established, mealtime expectations should begin to line up with expectations outside of meals. Ask yourself, “what would I do if this wasn’t food?”
  • There are very valuable lessons that children learn from consequences. Protecting them from consequences of “no” by always setting up the situation so the answer is “yes” deprives the children of learning important lessons. ▪ For example, getting the child to eat every day by only serving highly preferred foods deprives the child of learning the feeling of hunger, as well as the possibility that some new foods are good.

• Just as you wouldn’t expect an infant to drive a car or read a book, you would be disappointed if your teenager waited for you to change their clothes or put food in their mouths. It is appropriate to change your expectations as children mature.

  • If your child is a new or hesitant eater, their abilities with food may look different than their abilities in other areas.
  • Until their trust of food and eating becomes more stable, you may have different sets of expectations for food and for other areas, but it helps to be aware of the discrepancy and make very small steps to make them more similar.
  • If a behavior is new and fragile, it needs more support. Taste, variety, volume, texture, situation, etc., may time to stabilize.
  • Once a behavior is more established, parents and caregivers can begin to shape it or incorporate it into an expectation. For example, in the beginning, the “eating only at the table” rule, may be suspended, but once that behavior is more stable, eating at the table should be consistent and not open to negotiation except for special circumstances.
  • Patterns of interest and response will help you make future choices and determine when your child is ready for the next step.

Source 1

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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.

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!

July 23, 2017

Feeding Friday: The Impact of Unwanted Guests

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

Do these personalities show up at your family table?

It is important to interact with your child at the table and respond to their attempts to communicate.  However, if you are always trying to “push” food and eating, you are probably having the opposite effect than what you hope.  Despite your good intentions, pressure can turn you and your mealtime into an endurance event for you and your child, which is unpleasant for everyone present.

  • The Mafia – Force feeding with a smile
  • The Rodeo Clown – Offering a distraction for every bite so they don’t notice what you are really doing
  • Pushy Waiter – Hovering over the meal
  • Papparazzi – Cheering and taking pictures with every bite
  • The Voice-Over Narrator – Self-talking every bite in hopes of drawing attention to eating
  • Home shopping Network Salesperson – Always displaying and showing food, utensils and plates, hoping that your child will suddenly want one.
  • Used Car Salesman – Talking only about food, the benefits of food, the tastiness of every bite.
  • Human Calculator (or actual calculator) – Keeping track of every single bite, gram and calorie.
  • Perfectionist – failing to recognize and be satisfied with small attempts such as touching or tasting because they aren’t as big or as varied or as frequent as hoped.
  • Bad First Date - Going straight to the mouth with the spoon without allowing an  “introductory period”
  • Bad Date. Always.   - Continuing to pressure after a child says (or communicates) “No.”

Do any of these look like your alter ego, or is there someone else in your child’s life who has a tendency to take on one of these personalities? Picture what you would do and feel if you were seated next to one of these people at a dinner or event.  What would your response be?

 

June 14, 2017

Feeding Friday: Tube-Free Superstar Piper

Piper is a twin who was born at 27 weeks weighing 1 lb. 5 oz. Piper had many medical complications during her stay in the NICU.  A G-tube was placed prior to heading home from the NICU after a 4 month stay. While at home, Piper was on continuous feeds and continued to refuse the bottle. Although Piper underwent swallow studies which showed that she was safe to swallow liquids, Piper continued to refuse the bottle. While at home, Piper was not tolerating the tube feeds well and her parents felt she was always suffering from reflux or throwing up her feds. As Piper continued to make progress in other areas of development after leaving the NICU, she continued to refuse any oral feedings. Piper would push away the bottle and become upset when her parents would attempt to feed her. Piper’s parents expressed constant concern with the negative consequences of tube feeding including vomiting, movement limitations as she was developing, and chronic discomfort. Despite Piper’s continued development in other areas, Piper’s oral intake continued to decrease.

Piper’s family contacted Spectrum and treatment started in Virginia location when Piper was 9 months old. On the first day of treatment, the focus was on establishing Piper’s relationship with food and working with Piper’s family on offering food or liquids without forcing. Piper showed interest in yogurt and immediately showed her independent side! Piper loved to drink from her pouches and any cup that she saw her parents using! Piper immediately wanted to try out some solid foods, as this allowed her to be independent. She was picking up puffs and attempting to eat all on her own. Piper eventually started to show interest in yogurt and oatmeal for breakfast!

Piper now loves to sit at the table with her twin sister in her booster seat! She loves putting her cup in the circle of the tray and also occasionally likes to throw the cup. Piper loves milk and pretty much all fruit and veggies (especially cucumbers). She loves to eat buttermilk biscuits! Piper’s parents are so proud of her and should be! Piper has come so far in the past year and we are SO happy to say she is our new tube-free superstar!

 

April 25, 2017

Feeding Friday: Tube-Free Superstar Carlin

Carlin was born with a syndrome called CHARGE syndrome.  Kids with CHARGE can have a number of difficulties, including vision, hearing and heart problems.  Carlin also aspirated food and drink into his lungs making it unsafe for him to drink, so he got a feeding tube at 5 weeks old.  When he was 6 months old he could begin to take baby food purees safely, and at a year, he was finally able to drink liquids without it going into his lungs.  Unfortunately, all of the medical procedures and the inability to practice eating safely and positively had resulted in a feeding aversion.  In Carlin’s view, food was scary and frightening.  He would eat some bites of yogurt if he was distracted, but he didn’t like to drink, and his mother had to work very hard to get him to take anything at all.  His parents did everything the doctors and therapists suggested, but he made little progress in his intake.

Carlin’s family contacted Spectrum, and treatment started in the Virginia location when he was 18 months old.  On the first day of treatment, the focus was on offering food without forcing or bribing.  Once Carlin was able to initiate tastes himself, he actually swallowed a little bit more than when he was being rewarded or bribed.  By day 4, he was asking for milk and drinking up to 4 oz of at a time.  At first, most or all of the solid foods he tasted came back out of his mouth, but slowly more of each bite stayed in.  By day 6, he was using his fingers to help keep the food in his mouth and his skills got better, but he still often needed to have his shirt changed after a meal.  By day 7, he was taking enough so that he could discontinue tube use.  He sat up straighter at the table, and began putting two words together more consistently in his speech.  In the next week, his skills continued to improve.  He was willing to try most solids, and all of the foods were now staying in his mouth.   His mother commented that in a restaurant they could order him something from the menu, and didn’t need to worry about all of the food falling out of his mouth and making a mess all over the floor.

Carlin was able to have the tube taken out 10.5 weeks after the 10 day intensive treatment.  He loves to eat and will eat almost anything now.  Carlin is definitely a tube-free Superstar!