In this week’s episode, we are getting REAL about reflux. Why are we talking about reflux? It affects so many children throughout their feeding tube journey, whether they had reflux before the tube or after tube placement. It also impacts the decision for the timing of a wean, the process of weaning, and the transition to oral eating. Jennifer and Heidi are discussing what is known about reflux, what medical providers use to help diagnose and treat reflux, and how reflux is related to the tube weaning journey. Every child is so different and there is no medical guideline for reflux that would be the same for every child. Throughout our tube weaning program, we see many children who have all been diagnosed with reflux at some point in their life. It can be scary to start this conversation with your doctor, but Heidi and Jennifer will walk you through helpful tips to bring this conversation up with your team. There may be times throughout your child’s journey where you feel that your gut is telling you something doesn’t feel right. If that’s the case, start the conversation! This week’s episode breaks down different reasons for reflux, data from our tube weaning program at Thrive by Spectrum Pediatrics, and helpful tips to starting a conversation with your medical team. 

You can download this episode from Itunes, Stitcher, Spotify, Google Play, or listen to it below:

What are the guidelines? 

There is limited information on reflux and how physicians use certain guides to make decisions about treatment. There are a variety of different guides depending on the child’s age, symptoms, or other medical complications. There are different subheadings for treating reflux while finding guides such as reflux with babies, reflux with children, reflux with asthma, etc. What we have found is that there is little to no informational guides on treating reflux with a feeding tube. Often times, the decision to place a feeding tube because of reflux is a clinical judgment call at that moment because it will help the reflux. Reflux can be caused by a variety of different factors and therefore it is rare that two children would have the same exact treatment. Because of this, many physicians struggle with finding the “correct” treatment right away because it is such a case by case basis. 

There are a variety of tests that can be done to determine if a child is experiencing reflux or not. There are also many medications that help with reflux. Treating with medication is another common way for physicians to identify reflux because if the symptoms clear up, then the medicine is working. Because there is no set answer for every child, there is room for a conversation with your medical team. At Thrive by Spectrum Pediatrics, we work with your medical team to help start the conversation. This is not meant to replace your physician’s opinion, but to add on to the conversation about how to help your child’s overall relationship with food.

Why start a conversation? 

 It is important to remember that when a physician is working with a family to attempt to “treat” the reflux or manage the feeding tube, they might not see what is happening at home. It may be a completely different perspective for a family member at home vs. the doctor in the doctor office.  

When children associate eating or having a full belly (from tube feedings) with the symptoms that come with reflux, it is now a negative association. For some children, this may mean pain and discomfort, but for others this could mean vomiting all day. In any case, this is preventing a positive association to be built around food. When we start the weaning process, our main goal is to help children learn to trust, enjoy, and understand food. If reflux is not being controlled or is not considered, then there is an issue since reflux is associated with symptoms that are not going to add to the positive association.  

What are we seeing? 

When we look at the emerging data coming from our Tube Weaning Program, we find that more than 95% of our kids have an improvement in their symptoms of reflux and the majority of those children are able to go off their medication or improve their quality of life. In many studies that we found that look at the downsides of feeding tubes, reflux is listed as a “minor complication”. Within the study, this may make sense since there are other “major” complications that could be life threatening or require surgery. Although it is a minor complication in terms of medical guidelines, it is a major complication with families and a child’s relationship with food. It is crucial to note that reflux does have the ability to hinder a child’s ability to transition to oral eating. If you feel that your child’s reflux is not being controlled or is still present, that can be a very compelling reason to move forward with a tube wean, along with other signs of readiness.  

What can we talk about? 

Some physicians may say that a child cannot come off the feeding tube until reflux is controlled, but the reflux may not be able to be controlled until the child is off the tube. There are often 2 main factors that are overlooked if your child is experiencing reflux with a feeding tube and is not yet ready to wean, or has not been scheduled yet for a wean. 

• The density recommendations for the tube feeds 
  • This is often a recommendation when a child is having trouble with managing a higher volume through the feeding tube. When we find is that often times the denseness of the tube feeds is related to the reflux noted in children.  
• The overall volume of the tube feeds 
  • Sometimes less overall volume leads to less vomiting, which can help with weight gain or at least helps to stop the painful and harmful activity of vomiting. 

This is not meant to replace any opinion from your medical team. We are sharing this information in the hopes that this helps to have a serious conversation with your medical team regarding your child’s reflux. If you are being told to increase volume or density, but struggling with constant vomiting, discomfort, or reflux at home, talk to your medical team! 

You got this! 

References:   
Hyman, Paul E. “Gastroesophageal reflux: one reason why baby won’t eat.”The Journal of pediatrics 125.6 (1994): S103-S109.  http://www.sciencedirect.com/science/article/pii/S0022347605829336

Sullivan, Peter B., et al. “Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study.” Developmental Medicine & Child Neurology 47.2 (2005): 77-85.   http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2005.tb01095.x/pdf

Thomson M, Rao P, Rawat D, et al. Percutaneous endoscopic gastrostomy and gastro-oesophageal reflux in neurologically impaired children. World J Gastroenterol. 2011 Jan 14;17(2):191–6.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020372/

Wood, Ellen G., et al. “Complications of nasogastric and gastrostomy tube feedings in children with end stage renal disease.” Adv Perit Dial 6 (1990): 262-264.  http://www.advancesinpd.com/adv90/57complications90.html