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.
Hello,
Really interesting article . But I am so confused now . My baby came home on g tube and we had two sessions with his speech therapist. I asked, may be he is not hungry that’s why he is not showing any interest in food or if we should decrease his feed. She said let him play with the food just before feeds. That’s what I am doing from last two weeks but seems like it’s going nowhere. Need help
Jyoti, that is a great question. And feeding is very complex. It depends on the medical hx of your child and oral motor skills. All this needs to be considered when trying to increase oral and decrease tube. but you’re correct that hunger does make a difference with oral. It is really important to work as a team w pediatrician, GI and all the Specialists and w a feeding therapist that has great comfort and skills w tube feeds and oral feeds. And you need to make sure the medical conditions are being addressed/considered, as well as, the most opportunity for oral success/hunger. There’s no cookbook. And it depends if your child is ready for this approach. Parents have great instincts and questions. So continue to ask and get the right answers for your particular case. In addition to hunger, the other key to tube feeds for oral success is making sure they are vomit free feeds. If vomit is present with feeding oral success decreases because of the negative associations. If large vomit is present, volume needs to be looked at to see if your child can physically tolerate the target volume. But the case needs to be considered as a whole- medical, motor, alertness and interest etc. Hope that helps. Ann Marie http://www.firststagesfeeding.com
There are many approaches and techniques to improve feeding skills and help transition off of a feeding tube. Many of our tube fed kids benefit from a multidisciplinary feeding team. Feel free to email me at feedingnewsletter@gmail.com and I might be able to make a recommendation for a team in your area, depending on where you are located. thanks for reading the blog, Krisi
Hi!
We have similar issues with our baby. Is there any doctor or team in the Toronto are to assistant with his?
Interesting read; my husband & I haven’t had that outlook. If this theory works it’s brilliant. My son will be 6 months this week & is currently NG tube fed. I often think oh he’s putting on weight & again, do think this is due to being ‘force fed’. However I often justify it as he doesn’t have a choice. My son does have a genetic condition as well as mild laryngomalacia. My son can definitely swallow but we believe spending 7 weeks in neonatal, the trauma of having the NG feed in his nose everytime it comes out as well as vomiting is hindering is want/need to be orally fed. Hopefully with the knowledge of the above information, perserverance (at his pace of course) and patience we will get there. Before reading the above I had come across the expensive online ‘experts’ who can help with weaning. We will continue to do our research & support our son as best as we can to enable him to be orally fed sooner rather than later hopefully!
This sounds just like my 6 month old son. Did anything turn the corner for you guys that you would recommend?
Cristin Chester
Cristincay88@gmail.com
A very sensible, practical and humane approach.
Dr Jyotsna Padalkar
MD Ped.
Pune,India.
This is very interesting. My daughter was born with a VSD in her heart and was also small for gestational age. At her 1 month appointment, she was diagnosed with reflux and put on Zantac. The day she started taking Zantac was the day her feeding issues starting and she lost her hunger. When she was 8 weeks old, she underwent opened heart surgery to repair the hole in her heart and subsequently was given a NG tube due to fatigue and inability to complete feeds. She will be 6 months old in a few days and continues to have a significant lack of appetite and only eats about 50-60% of her feeds orally. She is gaining weight well and her heart is doing great so cardiac issues have been ruled out. She has slight delayed gastric emptying but medication including erythromycin and periactin have not helped. She has been off the anti-acids for over a month now and no change has been seen. I’m at a loss. Please help!!!
Angelica,
Where are you located? Perhaps based on your area someone will have a good feeding team recommendation.
Few thoughts but should not be fully considered without the guidance of a thoughtful team…
1. NG at 6 months is a long time. Work w team to see if child can move to full oral or consider gtube. NG can cause issues. Catherine Shaker has some good articles in her website about this
2. Hunger is key to oral success as well as respecting the child’s start, stop and refusal cues. Often there’s a prescriptive volume (usually 28-30 ounces a day of formula or EBM which is typically fortified to 26-30 cal/ounce). This often does not allow the child to be hungry between tube feeds. Often volume needs to be guided by the child. The child needs to regulate the feeding process versus prescriptive volumes and intake guidelines. Respecting hunger and refusal cues is key.
3. With that said the medical team needs to give input on weight gain needs for subsequent surgeries as needed
4. Often if the medical team agrees and volume is dropped during the day and the child guides volume between feeds then they begin to do more oral.
5. Oral feeds are often attempted when the child is not hungry and refusing at the beg of the feed.
6. All oral feeds should start w pleasure cues (opening mouth, leaning head into spoon, bottle or cup etc). if these are not present oral feed should not begin. Wait until child is hungry and shows cues
7. Child should be allowed to guide volume or when to stop versus a prescribed amount each feed. All typically dev kids vary w intake per feed but children w feeding issues/weight gain concerns and tube fed kiddos tend to be given X amount every feed which doesn’t allow them to regulate the hunger vs satiation process.
8. Work w a team to look at preferences for feeding and ways to follow the child’s cues based on their skills and abilities. Try not to allow volume and weight gain to be the only driving forces to feeding as this usually results in aversion and longer tube feeding
9. Feedingtubeawareness has great info
10. Work w a team to make sure GI and any Constipation issues are resolved.
11. Avoid using distractions, toys screens to override the child’s refusal cues as this will lead to aversion and negative associations with the feeding process. Problem solve why the child is refusing and work to feed only on pleasure cues and engagement.
This is by no means a cookbook. Every child is different and needs a careful assessment and team. These are general guiding principles I find help. I hope this is helpful.
Thank you so much for your input! We live 2 hours East of Pittsburgh and our daughter has been seen by GI at the children’s hospital of Pittsburgh. We’ve seen a feeding team who basically had no recommendations for bottle feeding but encouraged us to have her play with puréed foods. We’re taking her to children’s hospital of Philadelphia to get a second opinion to make sure there’s nothing medically wrong. At this point, we are doing 5 feeds a day at 140 ML of 24 cal Ellacare formula. Whatever she doesn’t take orally is given NG. She’s 14.5 pounds now which she almost tripled her birth weight only weighing 5 pounds at birth. The dietician we seen on the feeding team actually pushed up to give her more volume and fortify more to optimize her weight gain but we refused because higher volumes will make her throw up. We let her go 8 hours at night without feeding and when we try to feed her she’s still not hungry. There’s a place in Pittsburgh called the children’s institute, they have a program about transition off feeding tubes to oral and our hopes are to take her there if we don’t find any medical issues. I feel like all the doctors we’ve seen have been pushing weight gain because she was always small so I’m so afraid to let her drop weight but if that’s what needs to be done to get her eating I’m willing to do whatever!
My dietitian keeps trying this approach but it never works due to the fact my los problem is she has a fear of choking brought on by when they took the tube out too early and gave her too rich a milk without testing calcium levels causing her to vomit every feed until she was on a calcium free milk
There is no one size fits all approach- much of what we do on our feeding team is trial and error.
I really appreciate this article! My question is do I stop cold turkey feeding her through the tube? Or do I take one meal out at a time? And is weaning okay for all babies? Mine has a rare chromosome deletion that says that her natural body will be delayed at growing and smaller. The doctor put her on the G-tube at the beginning because she stopped gaining/growing at 9 months. Now we’re at 20 months and still on the tube but I would really like to get her off so she can learn how to eat better and more by mouth.
You have to work closely with your medical team, feeding therapist and a dietitian to develop an optimal plan. I’m sure Krisi could connect you with a feeding team that could help you to navigate the variables. Hunger plays a role for sure in weaning but you don’t want to go “cold turkey”. Typically you start w smaller feeds during the day (all oral or combination of oral and tube) spaced further apart and make up for some or all calories at night. But every case is different and medical conditions matter. It also depends if your child is averse today oral feeding, with frequent vomits, if the medical condition will allow her to tolerate a full feed at one time orally, if the child can tolerate bolus feeds etc. You also have to consider oral experience and skills/abilities. Is she able to take any food or liquid by mouth and how much? Etc etc. there are so many things to consider. Again… you need to work with a team and you, as the mother, should be very much part of that team. Good luck!
Is your daughter still on the tube? Im kinda in the same situation.
I found this blog helpful. Someone went through what you are going through
https://nasogastricintubation.blogspot.com/2020/05/if-your-baby-has-ng-tube-without-any.html
I have a child who has been on the NG Briddle tube since he was born. He was born with the rare dresses that causes there intestines to form outside of their bodies.Well he’s now a year old and is taking in 4 ounces of baby food in the day time but then gets a continuous feed of about 700 MLS of formula over 12 hours at night we put him on night feeds so that we can work on his oral feeds during the day. Because he is taking in oral feeds I’m thinking that he’d probably take in more if we remove the tube because he will also drink his formula from a cup if you give it to him that way. I really want to at least try and see if he does better with out the dependency of the tube so I’m wanting to have it removed to see because again he does take oral feeds . Do you have any advice on what I should expect once I remove the tube in a couple of days. Thank you
My son is a year old now, and on NG tube since birth. He had micrognathia (small jaw) and is resolved with a surgery. Spent first 3 months in the hospital, took very few bottle while in NICU, but when discharged and back at home he never took the bottle, infact he stopped sucking and was only biting on the nipple of the bottle. Around 7 months we introduced very little purées by smearing on his tongue and he took it little by little and later allowed to be fed by spoon. Started off with rice cereals and purées and things were looking good from eating once a day to 3 times a day until 10 months. At 11 months he started to teeth and stopped eating completely for a month, after his first birthday we reintroduced solids slowly by allowing him to touch n play and he was comfortable, but took hardly 4-5 spoons. And we had to transition from infant formula to toddler and decided on Kate farms, and by my surprise he loved it. He never drank his formula in his first year of life but loved Kate farms and takes around 50-60ml, but he refused solids and teething again but drinking Kate farms.
He is tube fed 4 times in a day 200ml
I’m stuck as to how to proceed from here, now that he likes Kate farms. How am I to proceed for the path which leads to be tube free? I need guidance or plan and his GI is not useful at all. He passed swallow study. And no medical conditions.
My daughter has been on an NG tube since 2 months old. She is 10 months now. She had heart problems and didn’t have the stamina to bottle feed so she got a failure to thrive diagnosis and was placed with a tube. She had her corrective open heart surgery at 7 months old. We have 3 therapy sessions per week and still can not get her to take her bottle. Now doctors that I have been fighting are winning the g tube surgery battle. My daughter also has Down syndrome. How do I help her?!?!?! She vomits formula but takes pedialite like it’s nothing. She is on 27cal formula fed 5.5 ounces every 3 hours 5 time per day. Is she trying to tell me that is too much. I’m beginning to think she is never going to take her bottle because I don’t know what I am doing!
Hello my daughter had a brain surgery done due to a brain bleed and has a NG tube in, she had it in for about 2 months now she will not take a bottle or even eat baby did that I offer her she just gags on the bottle and baby food as well as bite the bottle nipple. I’m not sure what to do cause I want to be able to wean her from the tube but how can I if she won’t eat by mouth. Please help me.
Hi, my 28 weeker baby has been tube fed since birth, he’s got the NG tube now and is pretty much 100% tube fed. What are some tips/advice you could provide to help increase his oral intake? He has a weak suck and doesn’t really have the suck, swallow and breathe coordination down. We see speech/feeding therapy 2x a week and OT once a week. He is growing perfectly fine, just not wanting the bottle.
This is very informative. I’m seeking any research you may have to support the use of neurontin for abdominal pain, specifically with the pediatric population. Thank you!
Thank you Dr. John. It seems so obvious and yet somehow it’s not to everyone. This has helped my tremendously with an autistic child that I am working with and he is on his way to transitioning completely off the tube.
Amazing, thanks for sharing. Totally makes sense, really helpful