Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding Tube Weaning’ 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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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!

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!

 

April 21, 2017

Mealtime Stress: When Professional Opinions are Conflicting

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

What happens if the medical team disagrees with you or with each other. This can sometimes feel like families are being bullied into believing one person or another, or into doubting their own beliefs and knowledge about their child. Many people report that dealing with conflicting medical opinions add a considerable amount of stress. We know that stress can derail mealtime progress considerably, so it isn’t surprising to find that any doubts and pressures from the medical team can show up and take a seat at the table, resulting in even greater stress.

Here are a few things to consider:

  • Have they considered the facts? Many people, even professionals, have an emotional response to novel approaches then look for the facts to back them up. Feeding has an additional layer of emotion that makes it difficult to separate feelings from facts. However, once them emotion is addressed, it is almost always helpful to address medical professionals factually, rather than emotionally.
  • * Do they need a paradigm shift? This can be true in many areas, but there is a particular need for a change in perspective regarding feeding tubes. Many medical providers view them as a positive factor, or at the worst a “neutral” factor in child development. However, that is far from the truth. It is true that they can start as a positive, but they can often become a negative.
  • Is this their area of expertise? The gastroenterologist specializes in the GI system, but isn’t really trained in feeding development, swallowing, or how to progress in feeding therapy. Pediatricians likely get a two hour lecture during their training about nutrition, and even less about feeding therapy.
  • Do they feel that they have failed?: Professionals are also people. When patients seek other input, it can feel like they have failed, making it difficult to separate emotion from facts.
  • Do they offer this service? Everyone has a lens through which they view information. Many big hospitals believe that their programs and personnel are the best. If they offer this service themselves, asking for them to refer out is actually a conflict of interest, or at least a conflict of philosophy.

Once you realize the direction of their hesitation, it may help you to prepare for the most positive interaction. Here are a few more general tips:

  • Remember that most medical providers want to help. Come to them and state clearly that pressure from any direction will have a negative impact on eating. Ask for their support in decreasing pressure around food and in strengths-based care. See our previous post on how to build a medical team!
  • Bring your own team to the appointment – If you are fearful that you will be entering into a confrontation with a medical bully, it is almost always helpful to bring someone with you. Both parents making a united front can help the conversation stay on task and become less emotional
  • Send advance information: Find out the best way to get your question or findings to the provider in advance of the appointment.
  • Try to remain positive and factual, and tell them specifically what you would like their input to be. For example, “Because we have made no progress with traditional treatment, we have decided to that we are pursuing this for our child and would like some parameters to ensure that we are being safe” Or you could try saying something like, “We have been successful with our treatment so far, but would like some help with monitoring future progress. We hope that together we can minimize the stress about weight, which will allow him to develop and grow on his own.”

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April 13, 2017

Mealtime Stress: Adding Fuel to the Fire

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

When you have a child with a feeding problem, it can be very difficult to find people who understand how tough it is, and how pervasive the fear and pressure can be. It is tempting to talk about the problem you are having with everyone around, in hopes of finding someone who can help. However, we have found that there are some people who can make the problem worse instead of better. We have also added a few strategies or phrases on how to handle some of these personalities to avoid increased stress.

Well-meaning friends and family: People who are genuinely concerned, but keep asking about how the feeding is going can unintentionally increase stress levels around parenting a child who struggles with eating. Whether the questions induce guilt, anger, frustration, or just fatigue, these emotions will not be helpful if added to your own stress.

  • Re-direct the conversation to other topics.
  • If you do have a “safe” person in the family, you may talk to them about being a go-between so that the rest of the family can stay updated, without interfering.
  • Have an honest conversation with the person or people that you need to take a break from thinking and talking about eating: “This is a tough time for us, it helps me to take a break from talking about it so much.”
  • Reassure them that you are seeing help: “I appreciate your concern, we are working through this with our feeding team.”

Fellow worriers: People who may not add negative emotions, but are more than happy to worry with you. If you know someone is prone to worrying, it won’t be helpful to bring up your concerns to them.

  • Avoid going to eat or feeding your child when they are around
  • Tell them you are struggling with worry around your child’s eating, and ask them to help you re-direct your own thoughts when you become too anxious: “I know I worry too much. Can you help me practice re-directing my thoughts?”

Bullies: People who make negative comments about eating or feeding, or your approach to either one. It can be unintentional, but often has an element of superiority. It can be from people who feel strongly about topics such as parenting, nutrition, breastfeeding, feeding or discipline

  • It rarely seems helpful to argue, as bullies usually don’t have an interest in meaningful dialogue. Their main concern seems to be making sure that you understand their approach and why they believe they are right.
  • If possible, avoid interaction with them, especially around feeding.
  • Be prepared to tactfully change the topic.
  • Remember the truth about what you believe so they gain less emotional leverage over you.
  • You may say that you appreciate their input, but that they don’t have the full story or you have differing philosophies: “I’m glad that worked for you, but we find that those strategies actually didn’t work in our house.”
  • Sometimes a neutral, factual comment can help: “That’s interesting, because there is a lot of research that shows that adult pressure around mealtimes can actually make food struggles worse, instead of better.”

Stay tuned for next week’s post on what to do when the bully is part of the medical team!

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