Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding Tube Weaning’ Category

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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March 21, 2017

Mealtime Stress: Why Can’t I Stop Worrying? How Do I Make it Stop?

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

Worries and anxious thoughts can sneak in like smoke under a door, coloring everything in the room. They can be disruptive to relationships and experiences, but also SO difficult to stop. Even in the middle of worrying, we have a sneaking suspicion that the anxiety isn’t healthy. The problem is that worry can also feel protective. That it means you are a good parent, a conscientious person and that you care. If you want to stop worrying, you need to give up the belief that worry is productive and that it serves a positive purpose.

Telling yourself to stop doesn’t work. Most of us have tried it, but it can even make the anxiety stronger because now you are focusing even more energy on those thoughts! Here are a few tips from HelpGuide.org, which is a mental health website that is affiliated with Harvard Health Publications.* We have found these tips to be incredibly helpful in our own lives and in working with families of children who struggle with eating.

1. Learn to postpone worrying. Write down thoughts as they occur to you, remind yourself to think about it later. It will break up the constant worry, and allow you to begin control your thoughts rather than allowing them to control you.

  • For current concerns, you can allow yourself a period of time every day to think about them, but limit the thoughts to that window of time. Set a timer if you have to!
  • For concerns about the future, you need to recognize the limitations of fretting in the present about a future problem.

2. Ask if the problem is solvable.

  • If it is, start a plan and take action. Ask the doctor specific questions or start a treatment process to address your feeding concerns.
  • If it is too far in the future to start a plan, write it down to worry about later. Logistical problems for the first day of Kindergarten can’t be resolved while your child is only 6 months old.
  • If it isn’t, accept the underlying emotions, such as fear or anger that lurk beneath the worry. For example, “if my child fails, everyone will believe that I am a bad mother.” Accept those emotions as part of being human and being a parent. Because worrying also protects you from feeling those emotions, embracing the emotion can help you create a better balance between your intellect and your emotions.

3. Challenge the anxious thoughts. Are you making the world or the situation more dangerous than it really is? The way in which you view a situation discredits you and your child’s ability to handle life’s problems and assumes that neither of you will be able to rise to the occasion and conquer new situations. These thoughts are called cognitive distortions, and can actually result in shielding you or your child from an opportunity to learn and mature. Take a look at your thought patterns to see if any of these seem familiar:

  • All-or-nothing thinking – looking at things in black or white categories, with no gray middle ground. “If my child isn’t eating all healthy foods in a meal, he is eating nothing.
  • Overgeneralization – generalizing from a single negative experience. He only ate two bites at breakfast, he doesn’t ever eat enough.
  • The mental filter – focusing only the negatives. Our parents often report their concern when their child didn’t eat their brussel sprouts, forgetting that he tasted them, which he has never done, AND he ate a bigger lunch than he has ever eaten before!
  • Diminishing the positive – Coming up with reasons that the positive doesn’t count. Yes, he ate a whole serving of ice cream, which is the most he has ever eaten, but it’s ice cream, not broccoli. Plus, he ate ice cream last year at the beach.
  • Jumping to conclusions – Making negative assumptions without the facts. The doctor didn’t call me back in an hour, I’m sure there is something seriously wrong with the tests.
  • Catastrophizing- Expecting the worst-case scenario to happen. This is especially difficult for families when there has been traumatic illness and difficult things did happen.
  • Emotional reasoning – Believing that your emotions reflect reality. “I am really scared about the doctor’s phone call. That must mean that he has bad news.”
  • Should’s and should not’s – making a list of what you should and shouldn’t do, and being upset with yourself if you break the list. For many of our parents, that can reflect some of the beliefs you made on how you were going to parent. “I wasn’t going to allow my child to have any sugar.” That can make it difficult to feel successful if one of your child’s first desired foods is flavored yogurt.
  • Labeling – Labeling yourself completely on your mistakes or on your shortcomings. “I can’t do this myself, I am a failure.”
  • Personalization – Assuming responsibility for things outside of your control. “I should have stopped the doctors, or asked more questions about the feeding tube before they put it in.” Realize that you made the best decision you could at the time, based on the facts that you had, and move forward.

4. Accept uncertainty – Worrying can feel like you are predicting the future, which will allow you to prevent any unpleasant surprises and control all the outcomes. Too bad that doesn’t actually work! Thinking about things endlessly doesn’t stop them from happening. At the very least, it can ruin the present. In some situations, especially with children and eating, it can actually cause the problem you are so worried about avoiding!

5. Be aware of how others affect you – Anxiety is incredibly catching and sneaky. In fact, we make sure that each staff member has another clinician to consult with during treatment. It helps to have someone who is not in the situation to de-escalate anxious thoughts and ground decisions in reality. Choose the people that you discuss your child’s eating with carefully.

6. Practice mindfulness – Acknowledge your thoughts, instead of trying to push them away. Don’t try to control them, hang on to them or analyze them endlessly. Engaging in those thoughts is what leads to being stuck in that cycle. Stay focused in the present.

Dealing with anxiety takes practice, so don’t be discouraged if your thought patterns don’t change overnight. Some people need help with changing these thought patterns so they don’t become more destructive. Next week, we will talk about the signs and symptoms of Traumatic Stress, and when to seek professional counseling.

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March 14, 2017

Mealtime Stress: What if It’s Me?

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

Although children with health and developmental challenges are at a higher risk of developing feeding problems, all children are susceptible to mealtime pressure. Last week’s post discussed the fact that mealtime pressure or a focus on healthy eating can actually backfire by creating more stress around mealtimes and food intake, resulting in even greater discord around food.

However, it is also a parent’s job to provide healthy foods and develop appropriate limits and expectations for their children. Navigating that balance can be extremely difficult. Here are a few questions to ask yourself to determine if you are bringing greater stress to the table.

1. Do I talk about anything besides food and eating at mealtimes?

2. Do I have a mental tally of the number of bites my child has eaten during the meal or over the day?

3. Do my childrens’ books and toys tend to focus on food and healthy eating?

4. Do I spend more time looking for recipes or foods to tempt the picky eater(s) at my table than I do reading them stories or playing with them?

5. Do I find myself saying “take a bite,” or “eat your food” more than 5 times per meal?

6. Do I bribe my kids to eat or to eat certain foods?

7. Am I the only one who can feed my child “the right way”?

8. Do I cheer or clap at every bite to encourage them to eat another?

9. Do I focus so much on intake that I don’t allow other people to enter the room, talk, or do anything that might “disrupt” the flow of eating?

10. Do I know the calorie and nutrition information of any food that makes it to the table?

If a number of these sound true for you, it is likely that you are contributing to the mealtime stress. This week, take a look at your mealtime behaviors and put yourself in your child’s place. Does it feel like you are trying to sell something? Would you want to listen to you if you were seated together at a dinner party? Too much focus on food, even praise, can have a negative effect. If you can’t stop thinking about it, it probably shows. Next week we will look at some things you can do to protect your child from your stress about food.

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March 8, 2017

Mealtime Stress: Should I Be Worried?

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

Should I be worried about my child’s nutrition? How do I know if my child is getting enough of the right nutrients? Will I know if my child isn’t getting enough to eat? My child is a picky eater, what if they are missing important foods that they need to reach their full potential?

As a parent, it is hard to stop the cycle of anxious thoughts, especially those around food. Our culture exacerbates the problem with continuous reminders about the importance of healthy eating. Because there is no better customer than an anxious parent, the marketing community takes full advantage of that to sell various products to solve the problem. Can you have too much focus on health?

Actually, too much of a focus on healthy eating CAN cause problems. Pressure to prepare and eat healthy food can bring a significant amount of UN-healthy pressure to the mealtime that backfires with greater refusal. It is especially harmful to children who already have an uncertain relationship with food due to medical problems, prematurity, prolonged hospitalizations or sensitivities to the way foods smell, touch, taste or feel. Katja Rowell explains how families get trapped in what she calls The Worry Cycle, which leads to counter-productive feeding practices and increased food refusal and anxiety.

What if it’s me? Next week we will go through some of the most common mistakes parents make in an effort to get their children to eat more healthy foods.

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January 10, 2017

Feeding Friday: Tube-Free Superstar Elsie

ImageElsie was born at 23 weeks, and weighed only 570 grams. That is less than 3 rolls of nickels, or a bit more than a can of baked beans! She was tiny, but she was a fighter from the beginning. She had heart problems and had surgery when she was only 2 weeks old, which left her with a damaged vocal cord. She had a brain bleed and some eye problems, which all improved. She learned how to talk and run and jump with her big sister. She even learned to take bites and chew up her food. The problem is that she didn’t understand the purpose of food and was only imitating food going in the mouth because that is what she saw her family doing. Once her mouth was full, she didn’t know what to do with it, so she spit it all out. Her mom made her a blended diet, and the family did their best to be encouraging, but weren’t able to teach her how to swallow the food. They tried feeding therapy, but reached a point where it wasn’t helping. They didn’t believe that forcing her to eat would encourage her to enjoy eating, so they felt stuck at how best to help her.

When she was 2, her family contacted Spectrum Pediatrics. Even though she wasn’t swallowing anything, it was clear that it was time to get her off the feeding tube and give her a chance to experience normal eating and mealtimes with her family.

ImageThe first few days, Elsie started taking small bites of ice cream and began drinking sips of milk and juice. She was more hesitant with the solid foods, and nibbled a few bites, but spit out most of the pieces. Over the next 2-3 days her volume of liquids and spoon foods increased, but she still spit out most of the solid foods. Then, on day 4 of treatment, she ate a whole cookie at an outdoor concert with her family and the therapist. That day, she also drank enough liquids to go without the tube at night for the first time in her life.

ImageSince that time, Elsie’s eating continued to improve, and she has never had to use the tube again. Within a few weeks, she was able to chew and swallow anything and her weight steadily increased. She continues to develop well and has become independent with feeding herself. Her mother is happy to report that Elsie loves to eat. She is definitely a tube- free superstar!!

 

 

January 4, 2017

Feeding Friday: Family Mealtimes with Tube Fed Kids

Our last post was about the importance of eating together as a family regularly. This is particularly important for kids who are tube-fed, but it is often more difficult. Stringent tube-feeding schedules and extended time spent on the tube feeding itself can make sitting down and eating together feel like either an additional chore, or an impossible luxury. Add in a history of stressful mealtimes that feel like failures, and the result is often allowing tube-fed kids to opt out of the family dinner table. Sometimes medical and behavioral complications have disrupted daily routines so much that family mealtimes have never even been attempted. Unfortunately, this results in a crucial missed opportunity on the road to becoming a healthy eater. In addition to the advantages mentioned last week, kids who are tube-fed benefit by:

  • Being part of a family routine
  • Seeing food as enjoyable
  • Having mealtime expectations that aren’t just volume or eating related
  • Being exposed to a variety of foods through sight and smell
  • Watching parents and siblings eat (research has shown these to be the most powerful tools in the development of healthy eating habits).

Even if kids don’t put a bite in their mouths, there are other measures of success:

  • Helping to prepare food, making it clear that eating is not an expectation. It allows children to feel the pride of contributing and increases food experience. Even young children can tear, toss, stir, scoop and spread with some help.
  • Staying at the table for a certain period of time. Even if it begins at 2 minutes, time at the table can then be extended. If your child shows significant anxiety just with being at the table, this is an even more important step in becoming an eater.
  • Completion of mealtime chores such as helping to set the table, cleaning up the silverware, and helping to pass the serving plates can put the child in proximity to food that doesn’t force eating.
  • Participating in family conversation, even if it begins with one or two responses. Non-food conversation is important for family bonding and for helping the child to become a part of the “eating world” in preparation for becoming an eater themselves.

Talk to your therapist about other ways in which to build up to pleasant mealtimes. Past fears may need to be worked through before any food is part of the equation. If this is frustrating, remember that many families struggle with this, not just families with tube-fed children. If you missed it, check out the resources in last week’s post here.

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