Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding’ Category

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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February 14, 2017

Cup Drinking: Where to start?

By: Jamie Hinchey, MS, CCC-SLP

As a feeding therapist, I often have parents ask me about where to go next when transitioning to a cup. Finding the appropriate cup for your child can be a difficult task. Although there are a variety of sippy cups on the market today, the most important transition for your child is eventually to either an open cup or a straw cup. If your child has a specific reason for a certain cup, your feeding therapist will help you with this transition. We often recommend practicing with open cup drinking or a straw cup once your child is around 6 months old or sitting independently. This depends on where your child is developmentally and it is important to keep in mind if your baby has any difficulty with swallowing. Although these two versions of drinking may be a little messier than the sippy cup, try practicing outside or in an easy-to-clean environment so that your child can learn.

Many parents view sippy cups as a developmental milestone, but drinking from a sippy cup is not a specific milestone a child must reach. When focusing on the developmental milestones, we look at a child’s ability to transition from the breast or a bottle to an open cup or straw drinking. As a child’s oral motor skills develop, they gain more control over their lips, tongue, and swallow. As feeding therapists, we notice that children are typically most interested in the cups they see their caregivers use. At around 9 months, your child may be able to start to drink from a straw or at least start to practice. There are certain cups that can be helpful when “teaching” straw drinking, although many kids learn through practice as their oral motor skills develop. We would not expect your child to be able to pick up an open cup without assistance and drink from it, there are a few great transition open cups that we often recommend to families.

Here are a few tips when looking for a cup for your child:

Handles: Handles are important when introducing a new cup since this allows your child to easily grasp onto the cup and start to learn how to independently bring the cup towards their mouth. When a cup is hard to hold, it is difficult for a child to focus on holding the cup, bringing it to their mouth, and learning how to drink from the cup.

Focus on the “top” of the cup: The transition open cup allows for the child to learn the motor pattern of drinking from an open cup. We often recommend the Miracle 360 cup for a transitional open cup. Since the top of the cup is mainly closed, the liquid comes out at a slower pace and allows the child to have better oral motor control. This cup has a lip on the top where your child learns how to position their top and bottom lip while drinking. There are also straw cups that have “weighted” straws, which means that the straws hold liquid even when the cup is tipped up, allowing the child to be successful even if they attempt to tip the cup up. Parents have recommended the Zoli cup for a first weighted straw cup.

Allow your child to explore: It is important when introducing a new cup that you give your child the time they may need to explore the cup. This means that when you are first starting, take the time to put the cup out while your child is playing with their toys. Although they may not drink from the cup yet, they will become comfortable with how to hold the cup and bringing it to their mouth. Your child will learn best from what they see you do, therefore mealtimes are a GREAT time to model drinking from either a straw or an open cup!

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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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December 19, 2016

Feeding Friday: Family Mealtimes

According to the Family Dinner Project, which is a nonprofit organization operating from the offices of Project Zero at Harvard University, there are a number of benefits to having a family mealtime. Research indicates that children and adolescents who are part of regular family mealtimes have:

  • Lower rates of substance abuse, teen pregnancy, and depression
  • Higher grade-point averages
  • Higher self-esteem
  • Lower rates of obesity and eating disorders

Other benefits include the dinner conversation, which can be a vocabulary booster that is even more powerful than reading. Telling family stories can increase pride in family heritage, resilience through adversity, and a sense of belonging. Finally, don’t underestimate the simple value of time together. This emotional video shows children’s ideas about mealtime with their parents.

Many families struggle with how to get family mealtimes started, and how to manage conversation with kids of different ages. Check out these resources at the Family Dinner Project for helpful resources on building conversation with your child at mealtimes. For a few other ideas on getting mealtime conversations going, check out here or this website!

Stay tuned for next week’s post on the importance of family mealtimes for children who are on feeding tubes.

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December 15, 2016

Feeding Friday: Holiday Food Play

Christmas is a season of celebration, gift giving, celebrating family and faith traditions, and food. For picky eaters, non-eaters, and those struggling with their weight, it can become so much about the food that everything else can be pushed aside. Here are a few other thoughts:

  • Giving food as gifts allows kids to see the nurturing side of food. This may be especially helpful for kids who have always found food to be a task.
  • Giving food that kids helped make or serve allows kids to feel pride in their work and get their hands dirty without the pressure to eat it, especially if it is for someone they like to please, such as a teacher or grandparent.
  • Making food platters or gifts is a good together time activity, while also preparing for a party or crossing a name off the shopping list. Making fun foods together allows children to be messy and creative without pressure to eat.
  • Making more than one type of food allows all foods to be seen as fun – fruits, vegetables, cookies and snack foods can all be fun, creative and festive without the pressure of “good food” or “bad food.” It is ok to have some of each, don’t feel pressured to make them all healthy, or all decadent.
  • The time together allows you to talk about what a “treat” it is to work together. Reminding both of you that not all “treats” are something you eat.
  • Making treats can target all kinds of strengths or areas that need help: touching new textures, cutting, rolling, sorting, making designs or patterns, picking up small objects, or counting. There are many ideas to cover each one of these skills.

Here are some ideas to get you started. Roll up your sleeves, clear an area that can get a little messy and have fun! For more resources on these fun food activities check out our Pinterest board here! For other sites with some helpful tips check out this website or here!

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December 7, 2016

Feeding Friday: Guest Blog

Our last post was about the importance of building a healthcare team and how to advocate for the care that you believe is best for your child. One of our mothers recently had that experience when she pursued Spectrum’s tube weaning program, which was a different program than the one the family’s physicians were recommending. She was able to handle the discussions in a way that allowed her son to continue to receive care from them, in addition to the alternate tube-weaning treatment program that she felt was in her son’s best interest. She agreed to write a guest blog talking about her experience with handling a medical disagreement and the lessons she learned in the process.

How do you handle disagreements with your child’s medical team?

Despite the initial discomfort, disagreements can actually lead to positive outcomes. For our family the topic of tube weaning was a major challenge with the GI team. Our pediatrician, while one of our biggest cheerleaders, deferred to GI to handle the tube and they were focused on just one method with which we had major concerns. Ultimately we made the decision to respectfully disagree with some team members and move forward with the care plan that best suited our family. The following points were helpful during potentially contentious moments with our team.

1. Remember, everyone has the same goal, the health and well being of our children. At times it may feel like everyone is on opposite sides, take a moment to reframe the issue and remind everyone of the goal at hand. I found myself reminding our GI team of this often. It’s easier to move past an uncomfortable conversation when everyone is united on the same outcome.

2. Know your allies, hopefully this includes your pediatrician, but this could really be anyone involved in your child’s care – therapist, specialist, social worker, etc. Luckily for us, our pediatrician has always taken time to listen and is open to new research and methods which we bring to her attention. Medicine is ever evolving and having team members who are open to change is invaluable. Cultivating a strong relationship with your pediatrician can also ease the burden of communication amongst providers. Having our pediatrician communicate with specialists on our behalf ensured that everyone was on the same page and took my emotions out of the equation.

3. You are the expert on your child, I know it sounds cliche but this is your team and you’re the leader. Working with esteemed medical professionals can be intimidating at times but ultimately we know our children the best. Before having kids of my own I didn’t really get this point but a mom’s intuition is real. Following your gut when your child’s health is on the line is terrifying but it’s the best thing I have ever done for our family. I can say without a doubt that if we blindly followed our medical team’s advice our son would still have his feeding tube. I’ll also mention that we are still under the care of our original GI team. We have all politely agreed to disagree when it comes to tube weaning but are thrilled with the common goal of being tube free.

Meryl Tucker, LCSW

Mom to Cole and Luke

Social Worker

November 29, 2016

Feeding Friday: Building a Medical Team

No one plans to have a child who NEEDS a Medical Team, so it isn’t a process that many people are prepared for.  Even for parents who have advance knowledge that there might be some health issues to deal with after their child’s birth, the actual process of walking through the healthcare system can be more exhausting and frustrating than it should be.  Here are a few reminders that may help you navigate your way.

  1. Most healthcare providers and institutions mean well, even if they don’t align with your expectations and needs.   However, they all have their own guidelines and training that shapes their view of your child and his or her situation.  Looking at the situation from their perspective and considering their values may help you determine the best way to proceed in creating an alliance.
  2. Don’t assume that institutions and providers have access to all the information.  On-line medical records can be helpful, but HIPPA guidelines and heavy caseloads sometimes prevent people and places from sharing information, especially once you are outside of the hospital environment.   Keep a binder or electronic copy of records handy for all hospital visits.
  3. Assume the role as team leader as soon as you can.  During a crisis, a doctor may be the most appropriate person to head up the team for making decisions that require specialty knowledge.  Remember that you always have a role on the team, and that you should become a leader of that team as soon as you can.  Asking questions until you understand all the explanations and options is OK and will help you feel more comfortable with making decisions as your child matures.
  4. Find a pediatrician (or primary care doctor) who suits your needs.  In complex medical cases, there may always be a need for informed medical advice.  Some pediatricians defer to specialists to make many of the decisions and take a sideline role.  Others feel more comfortable making decisions and refer to specialists only as needed. Remember that they are here to help, and you need to be able to work as a team.
  5. Working with specialists.  We are fortunate in many areas of the country to have specialists who can provide exceptional care for very focused needs.  For this reason, they can become experts in that area.  However, they are NOT necessarily experts in your child.  YOU are!  Although you are likely to have fewer choices in specialty providers, there are ways to work with providers whose goals differ from yours when it comes to your child’s treatments.

 

Stay tuned for our next post on what to do when you feel the medical recommendations don’t align with your own goals for your child.

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