Welcome to the Tube to Table Podcast! This is the podcast about helping tube fed kids become happy and healthy eaters. Every week, we will dive into the basics of tube weaning to help unravel the conflicting information families get from doctors, therapists, friends, and family. In this episode, you’ll get to know your hosts, Jennifer Berry and Heidi Moreland. Jennifer Berry is an occupational therapist and founder of the Thrive by Spectrum Pediatrics Tube Weaning Program. Heidi Moreland is a speech-language pathologist and clinical coordinator of the Tube Weaning Program. Both Jennifer and Heidi have over 30 years combined of experience working with families of tube-fed children. To learn more about your hosts, check out the Thrive team here!
In Episode 1, Jennifer and Heidi share the answers they received when they asked parents of children who we helped wean from their tube, “What did you wish you knew prior to your child getting a feeding tube?”. After going through the responses, they were not surprised to find out that many parents had the same questions. Some of these questions were about the medical side of the feeding tube such as changing the feeding tube and schedule changes. We often recommend that families use the great resources that both the Feeding Tube Awareness Foundation provide as well as the Oley Foundation . Both foundations provide information regarding the technical side of tube feeding, managing the feeding tube, and parent resources for when your child first receives a feeding tube.
Our focus during this episode is on children who have the goal of transitioning to oral eating and what their parents with they had known to eventually help their child become a happy and healthy eater.
Not All Feeding Therapy is Created Equal:
When your child first gets a feeding tube, your doctor will most likely recommend feeding therapy. Parents do not often realize that there are various types of feeding therapy, and some of them are more evidence-based than others. The most common types of feeding therapy we see are oral-motor techniques, behavioral therapy, and sensory. So what are they?
- Oral-motor focuses on how children move their mouth:
- A lot of evidence that shows that this therapy works with adults who have lost skills and are attempting to regain. There is not a lot of evidence that shows that oral-motor therapy helps to progress skills while eating.
- Sensory looks at how their touch, smell, taste, and senses respond to food:
- Very little to no evidence that sensory therapies help children progress, unless there is food built into this therapy.
- Behavior focuses on how your child behaves around food:
- A lot of evidence against forceful techniques in the long run with the way kids learn to eat.
- Children are learning to eat for external reasons, the research shows us that there is increased risk for dysfunction around eating and other health conditions such as obesity and eating disorders.
There is a lot of therapy happening that is not strongly evidence-based and carries the risk of having your child develop a poor relationship with food. You may see short-term progress such as taking a bite after a reward, but it is important to find a responsive feeding therapy technique. Responsive feeding promotes good attachment, helps your child learn to regulate what they are taking in, and develop autonomy around feeding and learning to trust their bodies. Jennifer and Heidi discuss how it is possible to address all of the components of behavior, oral-motor, and sensory in a way that does not have a negative impact on their relationship with food.
Should we wait to wean?
Many of the families we interviewed shared that when their child received the feeding tube, they were told that it would be used to get their child over the hump of the illness, weight difficulty, or food refusal, then they would “start eating” again. For many of these parents, that didn’t happen. Often parents are told to wait to wean and allow their child to learn it on their own. Jennifer and Heidi discuss the developmental literature that shows us that there are critical windows of development when the brain is ready for development, and eating is one of those. Often times, these critical windows of natural development are missed when families are told to wait to wean their child from the feeding tube.
Feeding Tubes Save Lives
When feeding tubes are needed, they save lives every day. When a child requires a feeding tube for a medical reason, they are necessary, and it is important to discuss with your medical team what to do when the feeding tube is no longer a medical necessity. When the underlying medical conditions that made the tube necessary are gone, there can be negative impacts in the long run of keeping a feeding tube in longer than needed.
How can my medical team help?
Having a child with a feeding tube can cause a large amount of stress within the household, including emotional stress, financial stress, and social stress. There is evidence that stress can have a negative impact on health, and therefore it is important to address these issues while working to wean your child from a feeding tube. Your child’s doctor is the expert on your child’s medical status including their digestion, nutrition, and other physiological functions related to their feeding tube. Most doctors have very little training about how children learn to eat and why it is so important for children to learn to self-regulate and build a positive relationship with food. It is our job as your feeding therapist to work with your medical team and help educate them on self-regulation, stress from the feeding tube, and the importance of responsive feeding techniques. STAY TUNED, in a later episode, we will discuss how to start the dialogue with your medical team.
My child is not ready to wean, what can I do?
There are strategies you can start doing now, while your child is tube-dependent, to help protect their relationship with food. Heidi discusses the importance of learning to read your child’s cues when they are showing you they may be hungry, full, or uncomfortable. If you are feeding your child and it doesn’t feel like it’s going well, or it’s too hard, it is okay to listen to them and stop offering. Sometimes, doing a lot less can help your child feel more comfortable.
Don’t forget to follow us on Instagram, Twitter, and Facebook! Do you have a question or topic you’d like us to discuss? We’d love to hear from you! Leave a comment below or email us at Thrive@spectrumpediatrics.com! See you next week!