Ideas for transitioning off of a feeding tube
From Dr. John Baker, Pediatric GI
I recently received an email from the mother of a child who was fed via NG tube and refusing to orally feed. Her doctor was recommending a G-tube but she was interested in getting a second opinion and avoiding surgery. I was able to put her in touch with an SLP, Jenny Hyatt McGlothlin, author of Helping Your Child with Extreme Picky Eating, who is at UT Dallas who then sent her to Dr. John Baker, Pediatric GI . Dr. Baker began treatment and I received more emails from a happy mother whose child was beginning to eat. I reached out to Dr. Baker hoping to learn from his approach to tube weaning. He has given me permission to post information from our email exchange.
From Dr. Baker:
I initially came up with this approach when treating those terrible post fundoplication bloat and dumping patients. Decrease their feeds, let them drop some weight and not only did the bloating and retching resolve, but they started eating by mouth.
I did not learn this in my training and I do not know if any of the other Pedi GI’s do this, to me it is just natural appetite physiology. One of the pediatric endocrinologist attendings in my residency made a statement that I have taken to heart. Charts and calculations can be helpful, but “Look at the baby!” I have found that a lot of feeding aversion is just them telling you “I’m not hungry” or “my body wants to be very thin”. Hunger is the best appetite stimulate and eating when you are hungry is enjoyable. Being forced to eat when you are not hungry is miserable.
I have had excellent results getting infants and toddlers off tube feeds and learning to enjoy eating by simply allowing them to find their desired level of body fat stores. Most children and almost all feeding aversion kids have a preprogrammed level of body fat they desire and their hunger drive is closely controlled by that level of body fat. The BMI will seek and follow a curve for that level of body fat, but the numerical value or % is not important. Infants will grow and develop normally as long as they have adequate body fat. They will deplete their body fat before stunting growth. And deplete muscle and stop growing before stunting head development.
I see a lot of kids (particularly Asian Indians) that will eat only when we let their BMI (weight/length or BMI) drop to below 1%. But on exam they carry a little subQ fat on their thighs and upper arms. Try and force them onto a “normal” curve and they get feeding aversion. Force feed or tube feed and they vomit. If you put weight on them with tube feeds they stop eating orally. When you stop tube feeds their BMI will drop back to baseline. Give night time supplements and they just eat that many less calories by mouth.
It varies with each kid. Babies, especially NICU grads, may tolerate excess weight until 2-4 mo after full term by date. First they resist feeds when awake and will eat only is distracted or asleep, then only asleep, then even refuse extra feeds in their sleep. If I can get the parents to back off on the expectation of calories they are “supposed” to take and feed on demand, they wind up taking about the same amount but without all the struggle. They vomit if force fed and if they get tube feeds to force extra weight they stop eating and vomit after tube feeds.
One of the first babies I tried this approach with 20 years ago was a former 25 week EGA that just stopped eating at 6 mo old. Her BMI dropped from way above the 95% to 10% before her appetite improved. She followed that curve for months, then mom and her primary got worried that she was to thin and put in a G-tube. They managed to push her BMI up a little, but she stopped eating, had “plication bloat”. She came back to me around 3 yr old and she was eating and enjoying food when her BMI dropped back to 10%.
I have never seen cyproheptadine change a feeding aversion kids BMI over time. The appetite may improve for a couple of weeks, but then drops back and the body fat stores do not change.
How do you assess fat stores?
I look at each child and pinch their thighs, biceps, and abdominal wall. As long as they have some fat stores, I let them feed on demand. This almost always works (never say always in medicine). Follow them every 1-2 weeks at the beginning to alleviate the fears of the parents and other health care providers.
Do you maintain fluid intake through the tube during weaning?
They can always have all the water or other non-caloric fluids they want PO. Most will take non-caloric fluids even when they refuse most oral nutrition. Their body resists calories, not volume. I have rarely had to resort to dilute formula (15 Kcal/oz) or syringe water to maintain hydration. The thirst drive is stronger than the hunger drive.
It is daily CALORIES that feeds the body fat stores and hunger….NOT volume. I do not use increased caloric density unless there is a reason to limit volume or fluid load.
I have not published data on this, but have many years of experience and case studies which show clinical success. I have not failed to get kids/babies off tubes and self feeding for >15 yr, unless there is a significant underlying cardiac, respiratory, neuromuscular, genetic, or developmental problem. Typical kids will not starve themselves to malnutrition or harm when nutrition is freely available.
The initial visit for “feeding difficulties” is usually long and often met with incredulity and resentment. But in just a few weeks the parents are thrilled and grateful. I take a deep breath and try to strengthen my resolve before the initial visit for feeding problems or poor weight gain. Reversing the mind set of parents that feel “they are just not trying hard enough” and overcoming the guilt that has often been reinforced by multiple providers for months or years can be the greatest challenge. Oddly enough…”your kid is just programmed to be skinny” can initially be harder for parents to accept than your kid has Crohn’s.
Feeding aversion from forced feeds is my personal soap box! I see it as a form of “good intentioned” child abuse.
How do you approach children with medical issues?
Kids with neurologic deficits pose a difficult problem. Will their normal hunger drive kick in? Do they have the strength and oral motor skills to take adequate calories? Increased risk for reflux and aspiration?
They often have decreased muscle mass and decreased activity, that will invalidate most of the usual caloric need calculations. These are the kids that you have to ignore the charts and calculations and rely on the exam for fat stores. The same approach applies, but you have to be more vigilant in watching for failure.
Cardiac kids are also a special case. If they have borderline insufficient cardiac function, the energy to eat may over tax their cardiac function.
The hypersensitive gagging, vomiting, sensory aversion kids will usually respond to cutting back calories and decreased body fat.
Autism is a mixed bag and requires a case by case evaluation, but hunger is still the best sauce to encourage eating.
We use neurontin for underlying gut pain and hypersensitivity, do you use it in the same way?
I use neurontin for abdominal pain and post infectious neuralgia on a regular basis, but have not tried it for sensitive gag, but it does make some sense from the sensory nerve physiology perspective. But again, get them hungry enough and even the hypersensitivity will be over ridden.
Sometimes and often with feeding aversion kids, their natural “set point” for body fat is below 10%. Not surprising, 10% means a little less than 10% of the general population is below 10%. There are kids that are perfectly happy and developing normally at a BMI of 0.1%. You have to throw the “norms” out the window and treat each child as the individual they are.
The problem with studies is having to establish standards for weight and BMI without taking in account for the individual natural variation of fat store set points. What is the goal? Make a kid follow a “normal” curve or being sure they grow and develop normally?
JHB
John H Baker MD
6300 W Parker Rd, MOB 2, #428
Plano, TX 75093
Phone 972-394-5756
Fax 972-394-9577
Very interesting article. Aligns with a lot of what I believe. I think so many kiddos are artificially fatter due to the high calorie sugar laden formulas they are tube fed. A lot love water and will drink it easily. I also think we micromanage their caloric intake and don’t allow them to tell us what they really need to eat.
Thank you for the information
Delighted to read this. Because there is no standard of care around feeding tube weaning, families encounter a dizzying variety of opinions and approaches, many of them ineffective. To have a provider look at the whole child, and recognize that what looks like “aversion” can be nothing more than a “no thank you, I’m full,” is a wonderful thing. One other consideration to add: support for *parents* and the family as they transition from a medical paradigm of feeding to a healthy, relaxed dynamic with autonomy and enjoyment.
Delighted to read this. Because there is no standard of care around feeding tube weaning, families encounter a dizzying variety of opinions and approaches, many of them ineffective. To have a provider look at the whole child, and recognize the role of appetite, is a wonderful thing. One other consideration to add: support for *parents* and the family as they transition from a medical paradigm of feeding to a healthy, relaxed dynamic with autonomy and enjoyment.
Again, delighted to read and share Dr. Baker’s perspective.
Received this from a colleague. This is wonderful!! I see this all the time. When parents can be helped to focus on the child and their refusal and pleasure cues feeding improves. We need to take emphasis off of volume intake and weight percentiles. 100% success w decreasing oral aversion and weaning from tubes in my experience when parents can be helped to put weight on hold, follow the child and their cues. Weight drops initially but then usually improves despite lower intake than average norms/typical. I also find exactly what he’s documented here that vomit stops, pleasure w oral feeds improve and family and child are much less stressed about feeding. Many say oh now I can play w my child vs feeding them every waking moment. . Many of these kids have volume induced vomit vs true reflux. Which obviously leads to aversion and poor oral. Love love love this article!! Thanks for posting.
Hello,
This is an informative article and has been shared by my Feeding Therapist. We are Asian Indian and she thought this might give some clue on accepted weight loss. My son has Nissen and Gtube, and has Chronic Lung Disease.
I completely agree with Parental mindset, it is really tough for us to let go and not worry about weightloss. During our 5 months in NICU, PICU, and a Step Down clinic at 3 different locations, we have seen the focus is on weight gain, and correctly so. Preemies are so fragile and each ounce matters. However, when we are out of hospital environment and thrown in the real world without any proper advice, things get really messy. We start obsessing with each ml, as we were told in hospital. My son had really tough time after Gtube and Nissen, and he couldn’t even tolerate 25 ml/ hr feed. He has come far and I am thankful that we were able to get good care after few months of discharge. Just wanted to share my thoughts!!
Thanks!
Absolutely agree. It takes time to give a little less importance to volume and weight. It’s so engrained in hospital course. And of course it’s necessary. But there does have to be a balance and focus on following the child so we can learn whatbis still medical or what has become behavioral because of the feeding challenges. You as parents have the hardest job when sent home w feeding issues. There’s few things that are more challenging. So grateful for your thoughts as a parent. I just discharged a kiddo and the parents said the same thing. Once they were able to give up a little on counting amount and feeding all the time and learned to space feeds and let the child stop when he showed he was done even if not target among things improved w time. they felt such a relief. And they were also Indian decent. Parents are amazing and the key to success w these little ones… such a challenge but all worth it for these miracle babies.