Are you wondering if your child is ready to wean from their feeding tube? One of the most common questions we receive from parents is “How do I know if my child is ready to wean?”
In this week’s episode, Ready or Not, we are discussing feeding tube readiness and what makes a child ready to wean from their feeding tube and transition to eating orally. There is a lot to consider and this is a big decision for many families. At Thrive by Spectrum Pediatrics, we focus on a series of readiness criteria and assess all areas of a child’s readiness during our evaluation process. This episode will talk you through what we look at while determining readiness. Heidi and Jennifer also discuss why it is important to assess all these areas prior to moving forward. They also discuss in detail why waiting is NOT always the right thing to do and why it is crucial to establish these criteria as soon as a child or family is showing signs of readiness.
So what makes a child ready to transition from feeding tube to oral eating? We focus on a series of readiness criteria when establishing readiness for a child to participate in the Thrive Tube Weaning Program. You can use this series of readiness to look at your own child and family to decide if it seems appropriate to move forward.
1.) Medical Readiness:
The first, and most important, factor of readiness to establish is that the child is medically able to wean from their feeding tube. Feeding tubes save lives and many children and adults require their feeding tube to help them survive a medical condition. Once the medical condition that made the tube necessary is resolved completely or able to be managed, you should start to have the conversation with your medical team on whether weaning is appropriate. This can be very clear sometimes, or fuzzier in other areas, so include your medical team in this discussion.
- It is easy to think that the original medical problem is still there because the feeding tube is there, but often times that problem is gone, but the refusal is still there. It can take some digging to look at how the original problem that made the feeding tube necessary has changed over time.
- The feeding aversion is RARELY its own diagnosis. There is generally always a reason for the feeding aversion.
2.) Growth and Weight Gain: It is important that it has been established that the child can grow or gain, tube or no tube.
- Establishing that there is no underlying medical condition that would make it difficult for the child to gain weight. It may be difficult for your child to gain weight, but knowing that it is possible for them to gain and grow.
- The tube doesn’t always mean weight gain. Your child does NOT have to be gaining or growing extremely well in order to be ready to wean. The most important factor is that they are showing the ability to gain weight, although it may be minimal, even on the feeding tube.
3.) Are they safe to eat?
In addition to medical safety, it is also important to look at if your child can safely swallow liquid or food, without it going into their airway and putting them at risk for aspiration. If a child is aspirating on various textures, then they are not ready to wean. Our program focuses on clinical signs or symptoms of aspiration and looks at the child’s swallowing and medical history.
What are some clinical signs or symptoms of aspiration?
- Chronic upper respiratory infections or complications
- Wet voice
- Fevers of unknown origins or congestion affiliated with mealtimes and drinking
If it is felt by your child’s medical team that due to their swallowing history or medical condition, a swallow study is indicated, then that would be done under a swallowing specialist who is able to visualize the swallowing mechanism (throat, tongue, airway) under an x-ray machine while your child swallows a specific consistency. Swallowing is the best exercise for swallowing. If your child is safe on one consistency, that can lay the groundwork to improve their swallow at other consistencies. This is something to discuss with your medical team when identifying readiness to wean.
4.) Family Readiness and Coping
There may have been very stressful events that led to the medical conditions or the hospitalizations that resulted in your child having a feeding tube. There is often a lot of stress inside families of children with feeding tubes. It is crucial to acknowledge this and have an open conversation with your child’s medical and feeding tube, as well as with the rest of your family to determine if YOU are ready.
- Eliminating the feeding tube can be freeing and reduce stress, but the process of getting there is not always easy and can be a very stressful, intensive time for families.
- It is crucial for every family to look at how the stress is impacting them, how they are coping with it, and focusing on whether they are ready to wean from the feeding tube as family.
Why is waiting to wean NOT always the right thing to do?
We wrote a recent blog post about this here, but Jennifer and Heidi also touched on this during this week’s episode. There are links at the bottom of this post to the various research articles and literature we discuss in this episode.
- There are critical windows of development where the brain is ready and targeted towards specific areas of development. It makes sense to work on these skills as close to the typical age of development as possible. It is ALWAYS possible to wean if your child is ready, but it can get harder as the child gets older.
- Self-Regulation: Knowing what your body needs to “make their engine run” and feel good. Infants and toddlers are the best at this. The research shows us that the older you get, the more susceptible you are to what is going on around you.
- The literature also shows us that there are increased health risks later in life including problem with weight, eating disorders, and drug abuse, that are correlated with poor self-regulation in childhood.
Readiness is established and competence is presumed. Now what? It is important to look at the downsides of the feeding tube and why it may not necessarily be the best thing when a child does not need it anymore.
- Medical and Dental Implications: This should be discussed with your medical team, as we are not medical doctors. Many parents of children with feeding tube understands the risks with infection, irritation, reflux, and dental complications.
- If the feeding tube is helping a child or adult stay healthy, the risks are worth it. These risks can be maintained and your medical team can help you with this.
- Social Implications: People who are going to have a feeding tube for their entire life, the tube becomes a part of them and they are able to learn how to have their feeding tube be a part of their future. We are focusing on children that no longer need the feeding tube. Parents report that this can feel isolating and hard to feed a child on the go or enjoy the socialization of a meal.
- Family Stress: Families that we have worked with have reported that it was difficult to leave the house, finding child care, and socializing with their family or friends.
- When a family is stressed, it has a negative impact on their health.
- When there is a breakdown in the ability to feed your child successfully, it has a huge impact on how parents are able to cope and feel about themselves as parents.
Here are a few of the literature articles we discussed in today’s episode. Please feel free to message us on social media or email us if you have any other questions about these literature articles or anything else we discussed in today’s episode!
Arvedson, J. C. (2006). Swallowing and feeding in infants and young children. GI Motility online. https://www.nature.com/gimo/contents/pt1/full/gimo17.html
Birch, Leann Lipps, and Kirsten Krahnstoever Davison. “Family environmental factors influencing the developing behavioral controls of food intake and childhood overweight.” Pediatric Clinics of North America 48.4 (2001): 893-907. http://www.sciencedirect.com/science/article/pii/S0031395505703473
Fox, Mary Kay, et al. “Relationship between portion size and energy intake among infants and toddlers: evidence of self-regulation.” Journal of the American Dietetic Association 106.1 (2006): 77-83. http://www.andjrnl.org/article/S0002-8223(05)01724-4/abstract
Gottrand, F., & Sullivan, P. B. (2010). Gastrostomy tube feeding: when to start, what to feed and how to stop. European journal of clinical nutrition, 64(S1), S17. https://www.nature.com/articles/ejcn201043
Ishizaki, A., Hironaka, S., Tatsuno, M., & Mukai, Y. (2013). Characteristics of and weaning strategies in tube‐dependent children. Pediatrics International, 55(2), 208-213. https://onlinelibrary.wiley.com/doi/abs/10.1111/ped.12030
Krom, H., de Winter, J. P., & Kindermann, A. (2017). Development, prevention, and treatment of feeding tube dependency. European journal of pediatrics, 176(6), 683-688. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5432583/pdf/431_2017_Article_2908.pdf
Mason SJ, Harris G, Blissett J (2005) Tube feeding in infancy: Implications for the development of normal eating and drinking skills. Dysphagia 20: 46-61 http://www.ncbi.nlm.nih.gov/pubmed/15886967
Wright, C. M., Smith, K. H., & Morrison, J. (2011). Withdrawing feeds from children on long term enteral feeding: factors associated with success and failure. Archives of disease in childhood, 96(5), 433-439. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.204.2442&rep=rep1&type=pdf