Changing Colors: The Blog of Spectrum Pediatrics

Archive for the ‘Feeding Tube Weaning’ Category

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 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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November 28, 2016

ASHA Presentation

We are all thankful for our wonderful feeding therapist and clinical coordinator of our Tube Weaning Program, Heidi Moreland! A few weeks ago, a few of our speech therapists headed up to Philadelphia for the American-Speech-Language Hearing Association Convention (ASHA). Heidi presented along with Jennifer McGlothin on responsive feeding and how important this is for parents and therapists throughout feeding therapy. This presentation focused on how to create a healthy relationship with food for new and fragile eaters.  Heidi discussed the philosophy behind Spectrum Pediatrics feeding therapy and why it is crucial that we are helping our little ones build their relationship with food in a positive and child-directed way. We had so much fun seeing Heidi represent Spectrum Pediatrics at the ASHA convention!

November 22, 2016

Thanksgiving Traditions for Picky or Non-Eaters

By: Heidi Moreland, MS, CCC-SLP, BRS-S, CLC
  • While there is absolutely nothing wrong with looking forward to a delicious meal at Thanksgiving, not everyone shares the same feelings about food.
  • Focusing only on the food can minimize or eliminate the enjoyment of the holiday for or kids who don’t eat yet, or even for kids (and some grownups!)  who are cautious about food.
  • There are many ways to involve the non-or selective eaters into the celebration.  It may have the ultimate benefit of increasing enjoyment for the rest of the guests as well.

Make the celebration about the people: If there will be out of town guests, go through pictures to talk about who might be coming. It may be helpful for older children to discuss past memories with guests or family members. If there are going to be new people, talk about ways to make them feel welcome. If you are looking for any crafts about family check out this website to see how to make placemats or name tags for each guest.

Tell stories: It can be fun to bring in the history of Thanksgiving and talk about the story of the first Thanksgiving and why it was meaningful to have enough to eat. Encourage people to tell personal stories about growing up, moving, or how they met to take the focus off of the food.

Involve them in the preparation: Take your children to the grocery store while you prep for cooking and try to elicit their input, for example, “Which flowers look prettier for the table?”. Another way to have your child help to prepare may be to have them count how many people will be there and how much food will be needed. Have them help set the table. Let them help with cooking.  Don’t ask them to taste any, and reassure them that they don’t need to eat it later.  Tell them how much others will enjoy their contribution to the meal.

Share: Encourage serving family style if that isn’t already the tradition.  Don’t pre-plate their food, let them do as much as they can to serve their own food. If your child eats only a few foods, make something comfortable for them, but make or bring enough for others to share.  Chances are good that your child is not the only one who will like the nuggets or cheese and crackers.

Save the hard work for private: If they are overwhelmed by eating with a large group, provide them with an appetizer before the meal or a snack later that will allow them to sit at the table and eat a small amount without going hungry at the end of the day.  (Note: Don’t assume they won’t try new foods, either.  For example, cousins can be great at encouraging kids to try new foods simply by eating it themselves. )

Don’t force trying new foods. Force in private is never okay, but public pressure is even more shaming. Deflect food questions for a child of any age. You don’t need to explain anything at all, but if there is pressure, a few sentences may help deflect, such as: “I know that your kids ate everything, but we save trying new things for private, so that parties can be enjoyable for them and for us.”

Be thankful: Sometimes it is hard to see progress when you feel under the microscope, but don’t forget to enjoy this holiday with your child and those around you! Remember those little victories rather than challenges that are still to come!

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November 15, 2016

Feeding Friday: Responsive Feeding Presentation

Our clinical coordinator of the Tube Weaning Program, Heidi Moreland, will be presenting at the National American Speech Language and Hearing Convention (ASHA) this week, along with Jennifer McGlothlin, author of Helping your Child With Extreme Picky Eating.  There are extensive references that accompany their presentation and support our work with responsive feeding and creating a healthy relationship with food for new and fragile eaters.  We thought others might find these references to be helpful as well. If you are interested in learning more about our intensive tube weaning program check out our previous post here. Stay tuned for more information about Heidi’s presentation at ASHA!

ASHA 2016 References

For more information about Jennifer’s book check out this website!

November 10, 2016

Feeding Tube to Family Table: How does that work?

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

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

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

 

November 3, 2016

Feeding Friday: Tube-Free Superstar Parker

Parker and his twin sister were born at 27 weeks.  He weighed 1 lb., 14 oz.   Eating was always difficult for him, even after the medical problems got better.  He always had a lot of vomiting, and had very little interest in food.  He did start show some ability to eat purees, but even on the rare times he wanted it, his parents felt that he didn’t know what to do with it in his mouth.  They disliked the behavioral strategies they were using in therapy, and felt that he was not making progress in liking or eating food.  Because no one was helping them with a plan to get off the feeding tube, they started looking for other answers.

Parker participated in the Spectrum Tube Weaning Treatment program in March, 2016.  He started to show more interest in food when there was less pressure to eat.  Once his calories were decreased, he began asking for food and taking small bites.  He was still pocketing food in his cheeks, but slowly began to swallow more foods.    By Day 5 of the intensive treatment, he was taking enough by mouth to stop using the tube.  He was eating pouches and yogurt and chewing and swallowing small pieces of cookies, chicken nuggets, banana, cheese, small hot dog pieces, graham crackers, cold meat, and pasta pieces.   He still had some problems with getting upset around food and sitting at the table so the therapists and his parents worked on some strategies to help him learn to calm down and to stay at the table long enough to eat his meal.

Parker improved every day, and never went back to using the tube. It came out 3 months later. His volume and variety continued to go up.  Now he often seems to eat better than his twin sister.  He is still small, but he is very active and his weight gain is slow and steady.  He loves pizza and trains, and can’t get enough of climbing and exploring.

This year at Halloween was his first to try all of the candy, and he loved it.  Parker is a tough little guy, and a true Tube Free Superstar!