Behold: Tube weaning research and guidelines

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.

About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Inspiration, Research and resources, The tube, Tube weaning and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

33 Responses to Behold: Tube weaning research and guidelines

  1. Connie says:

    I was so happy to find this post. My son (11 weeks) has had an NG tube for 2 months now and I’m desperate to wean him off of it. I am confident he can learn to eat all that he needs to eat on his own as he currently eats roughly 2 ounces out of the 4 we give him every 3 hours. But I have found very little support out there for parents of kids with NG tubes or how to wean them from those tubes. Thank you for blogging about this. It’s so encouraging to see the photos of your little girl eating so well.

    • Christina says:

      Hi,

      My daughter is 7m and currently has a NG Tube. She does not like to eat! She has a heart defect that is being fixed friday.

      Do you have any tips on how to get my little on to eat atleast 1 oz. she only takes about 1/2 oz out of 4

      Thank you

      • nadia says:

        Hi my daughter was born with a heart defect but she had intestinal surgery at a few weeks after birth & is hooked on ng tube i am in the same boat but my daughters heart surgery isnt til a few months i need pointers too

  2. Kate says:

    THANK YOU for this wonderful information, and for sharing your story here. I have a beautiful, wonderful, cheerful, perfect 9.5 month-old boy…who is G-tube dependent. He is capable of eating but refuses. His main difficulty is with drinking liquids (he chokes on anything beyond a few drops at a time), but I believe this can be overcome. I just don’t know exactly how to do it. What struck me in this post is the idea that my son was given both the G-tube and Nissen fundoplacation with NO PLAN whatsoever to get rid of it. We go to our hospital’s feeding clinic every few months but they have no interest in getting rid of the tube; they merely tell us how many calories to give him thru the tube. I am desperately researching ways to wean him. Thank you so much for sharing such great info.

    • Christina says:

      Hi,

      My daughter has a NG Tube. She does the exact same thing with liquids. Does your son have his G tube still? If not how did he overcome it?

      My daughter has a heart defect due to why she does not eat.

    • Meghan says:

      Hi, my 1 year old son has had a G-tube for almost a year now. he’s now very dependent on it even though it’s been safe for him to eat for a few months now.(he had been aspirating since birth for un known reason). He just refuses to eat and drink. he does not like stuff coming at his face at all. he’ll bring a few toys to his mouth but has a real aversion to most things. he also has a fondoplacation. Did you have any success weaning your son and if so could you please give me some pointers, I would really appreciate it.

      • Kristin says:

        Hello. I have posted a few times previously, but not since early December. I am happy to report that we have successfully weaned our son Ryan off of his G-tube. We had intended on keeping it in during cold/flu season…just in case…yet it came out accidentally (and I couldn’t get it back in) in January and we made the decision not to have it put it back in. Today he was diagnosed with RSV, but so far he’s still eating and drinking well. I am very thankful for that.

        He has never had aspiration issues. Mainly he had a weak suck (due to low muscle tone), which was part of the problem initially. He also had reflux and food intolerances which became pretty bad at one point and I think he was feeling so miserable puking up foods and having belly aches that he just stopped eating all together.

        He had some aversions to certain textures for a while, but overcame that with stimulation to the mouth with oral motor suggestions from therapists such as mouth cheek stretching, vibration tools, and brushing.

        He saw a feeding specialist that had a lot of knowledge about these things and helped us to work on these issues, as well as learning how to effectively chew.

        So I think over time, the things that helped were speech therapy, feeding therapy trying every cup/bottle under the sun to find the ones that worked best, not giving up but not making eating time a battle, and he also didn’t start with aspiration or swallowing problems.

        We finally weaned him by getting him to learn how to drink out of a straw. He learned this with the help of the Honey bear cup:

        http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

        The Honey Bear allows you to control the flow of liquid into a child´s mouth by squeezing gently on the bear’s tummy to push liquid through the straw. Once the children have a little bit of liquid in their mouths, they are encouraged to learn how to drink through a straw. It can also be used to transition from bottle-feeding to cup drinking.

        Prior to learning how to drink out of a straw Ryan had been able to suck from a bottle at times, but not consistently and not effectively all of the time. So there was a time when he could eat well, but still not drink enough to get rid of the tube. In November, once he learned how to drink out of a straw I knew he could be effective at both and stopped the tube feedings (along with communication with his GI doctor and input from dietician).

        I think there are so many factors creating the need for kids to be G-tube fed, so not sure any of this information will help. I thought I’d share it just in case it could help someone. I still have a little bit of an uneasy feeling in my stomach about not having the tube as a back up. Yet he’s come so far, and continues to make progress. We used some sort of feeding tube (NG or Gtube) from age 6 months to 3 years old. Good luck

  3. Jen says:

    Thank you – I also cried reading the study. We avoided the tube, but my 2 year old son is dependent on Pediasure due to severe GERD-related feeding aversions and currently only eats minimal solids. Our feeding therapist said that switching him off of Pediasure could be handled like weaning from a tube. I am really excited about the article and will definitely show it to her. Please contact me if you know of any place in the US that uses the Graz method. Thanks!

  4. Silvia says:

    THANK YOU so much for this blog, I can not explain how much it has helped us. I could not believe my eyes when my internet, after many months of proding it, has produced what I asked it to – all thanks to you! Our son Alex is now 16 months, has exactly the same health issues as your Stella, but a couple of ‘problems’ on top of that – severe laryngomalacia (floppy larynx), severe reflux (being one of the unfortunate and most damaging symptoms of laryngomalacia) and a heart murmur. He is 16 months now and has been dependent on NG tube most of his life. His medical conditions have much improved over time and we have managed to partially wean him off his tube (thanks to the internet) – he takes solids (they are not very solidy though – mostly total mash), but is particularly bad with drinking liquids and there is just no help out there for us with this in the UK. Because Alex is actually eating something, he is not ‘poorly enough’ to be referred to a specialist feeding clinic in London. I am pulling my hair out. His speech therapist lacks passion for the subject and his dietitian (No.2) just counts calories…His consultant’s advice is to wait with weaning until he drinks more but does not help us with getting him to drink more. His Gastroentologist is the best from his medical team but is so sought after we can not get hold of him easily. His advice is to stick to NG tube, not go for Gastric tube and keep working on his oral skills with the help of …the local medical support team (so we are doomed!)…I have emailed Graz today to see if they can help…We are desperate for the tube to come out, but too scared to go through yet another ‘trial’ ending with dehydration because of inadequate local support. All the best to your Stella and your family! I have a couple of questions though if I may, with the Graz email coaching, did you get an email every day? How much did you pay for the coaching and were they able to do it straight away?

    • Tamara says:

      Hi Silvia,

      How I feel for you! I have a 2yr 3mth daughter who has been through very similar things. From birth she ‘failed to thrive’. Wouldn’t breast feed, would hardly take anything from a bottle etc.
      Lara was diagnosed with a heart murmur @ 7 weeks which was then fixed surgically. Complication of this was that they paralysed her left vocal cord.( left laryngeal nerve runs v close to surgery site) She was also diagnosed with Laryngomalacia and GERD. So post surgery she wouldn’t eat anything! So we took home a 12 week old projectile vomitting baby with an ng tube and no guidance as to the future!Obviously a lot has happened since then. But in brief we did end up with a gastrostomy @ 5mths as the NG tube just became completely unworkable as she pulled it out almost daily( no matter how I taped it down!)
      She still has the gastrostomy but I’m battling to have it removed over the next few months as she can now eat and drink ( after a lot of work- mostly mine). the GERD has also resolved itself. The issue we have is how much she’ll eat and drink to maintain weight gain!

      If any of the things I’ve discovered can be of help I’d be delighted to share them with you.
      tamara.sanghvi@btinternet.com

  5. David Ho says:

    Excellent work! Here is another parent support network founded by a mother from Australia. It would be great if others can also see your work. The support network is building real momentum now with members increasing rapidly.

    http://tubefedkids.ning.com/

    Hopefully, you can link up the two websites to enhance information sharing.

  6. Amy says:

    Amber I always find the best inspiration when reading your post. I sometimes just open it up to see what you have to say next and how Stella is doing. I hope you don’t mind but I have passed your link on to moms who I think would get as much inspiration as I have from you. I agree with David it would be great to link the two sites. You have done such an amazing job and are so helpful.

    Hugs.. Amy

  7. Christina says:

    My 7m daughter has a ng tube. She has PDA a heart problem being fixed friday. How did you cope with having to tube feed her? Its so sad for me to watch her not want to eat. I feel like its my fault. When she was younger she actually ate more now everyday it gets worse. I am at a loss. If anyone can guide me and tell me more about there stories that would be great.

    Thanks all

  8. Sarah Riley says:

    Wow, I suddenly don’t feel alone, but sadly have realised how universal this support issue is. We live in London, UK.

    My daughter Paige is now 10mths old and has had an NG tube to supplement breastfeeding since she was 10 days old as she does not demand enough from me to ensure that she does not dehydrate and to ensure weight gain. Sadly she wont take a bottle.

    She also had a heart condition AVSD which was fixed in January, but her demand for more did not happen as we were told it would. The feeding teams here as you have already pointed out don’t seem too bothered that she has a tube and when asked to help wean her off it suddenly go silent. They are quite happy to point out the things that your doing wrong and point out that the tube should have only been in for six weeks, but no help you with a weaning programme.

    I can not tell you how many days I’ve been depressed and in tears over the whole thing. We were home (NZ) recently to introduce Paige to the family and the number of times we had to explain why we had it and the number of times a certain person in the family would say ‘I’ll do it and we’ll have this tube out before you know it’, was so upsetting.

    I’ve been looking for a new vocation and as I can’t stand to see others suffering as I’ve suffered so I think I have just found it.

    Amber, thank you so much for not giving up and for sharing this info. I’ll give it a go and let you know how we get on.

    Big hug…. Sarah

  9. Kristin says:

    Thank you for this post. My son started with an NG tube at the age of 10 months, and eventually had a G-tube placed. He has Wolf-Hirschhorn Syndrome (missing piece of short arm of 4th chromosome), and feeding issues are common. Yet, this statement rings so true for him…

    Many children remain tube dependent after successful healing of their underlying disease.

    That is exactly what I have been thinking lately. He has overcome all of the feeding difficulties that he once had. He has been eating pureed foods for some time and can now chew and eat diced foods, as well as cheerios and small crackers. His major difficulty was with drinking…he simply could not drink well. Now he absolutely has the ability to drink and it’s obvious that it has become a “mental” thing for him to expect the tube feeding when he doesn’t feel like eating. He gets excited about food, asks for it, enjoys choosing his foods, enjoys being part of mealtime, and has the ability to eat and to drink now…he had been drinking a little from a bottle but recently learned how to very effectively drink from a straw. With 100% certainty I know he’s ready to be weaned.

    So even though I know he can do it, and that we need to aggressively move toward weaning I still worry about making sure that throughout the process he doesn’t get dehydrated or lose weight. He is now 3 years old and just hit 17 pounds, so he’s still small. Yet he’s strong and healthy now, which was not the case just over a year ago.

    I have been contemplating contacting the staff at Graz, after hearing that they can do email consultation throughout the weaning process and that US doctors are much more conservative about weaning…

    Because he is essentially choosing to get tube fed out of convenience now, I know it will only be more difficult to wean him as he gets older (and smarter!!), so I need to act NOW. This post solidified that for me.

    Thank you, Thank you. Kristin, Mother of Ryan ’06

    • amberhj says:

      Dear Kristin,

      Thanks for your comment and for sharing your story. What I most want to say to you is “Follow your instincts!” You know your son best and your gut is going to be more effective than even the most specialized experts out there. Graz was a wonderfully helpful part of Stella’s weaning team and they may be a great source of confidence (so important in weaning) and reassurance and expertise to you as well. Your son has come so far and you have much to be proud of–your efforts have paid off! You will get him the rest of the way there. Hang in there and keep in touch if you can. I hope to hear about your weaning success, and soon! Best wishes!

  10. Kristin says:

    Thanks~ Last Wednesday, shortly after posting my first message I decided it was time to try to start weaning. I called the doctor and talked with his nurse about our plan. He was out of town, and so I had until this past Monday to get things underway.

    With the exception of 3-4 ounces of water while sleeping to help avoid dehydration, he has not had a tube feeding since that day. We have made it one full week, and to turn back now would be heartbreaking! The doctor’s office called back on Monday and I did not receive the resistance I expected. He said to continue with small, frequent meals and watch for signs of dehydration and to check his weight weekly. If as of next Monday he has lost weight he will recommend adding some tube feeds.

    We are going to take it day by day, but as long as Ryan isn’t losing a ton of weight, remains hydrated, active/energetic, isn’t regressing and continues to ask for and accept food and drink I think I will hold off. I might request blood work to check to be sure all is well there and add a multivitamin if needed, but I know I need to remain strong and (as you said) follow my instincts in this “mission” as long as he is doing well and staying healthy.

    We are not going to actually remove the tube for a while, just in case he’d get sick or something and need additional hydration, etc.

    Anyway I will try to keep you posted!! Thanks again for all of the wonderful information on this site!

    Kristin

  11. Anneke says:

    Thank you for posting this! I will be off to read this **promising** article in just a moment, but was so thrilled to find positive information!! My daughter, Grace, has been tube fed since birth (she’s now 17 months) due to prematurity and cardiac issues. She had a terrible oral aversion (likely due to the continual intubation) and refused anything liquid or food, gagging and throwing up constantly. We would feed her 4 bolus feeds per day and a 10 hour continuous drip per night. The bolus feeds would take us anywhere from 1-2 hours, and we’d still have vomit- poor girl! This month, we ended up in the hospital with a stomach flu bug, and it ended up being the best thing to happen to our family. Grace was placed on a 24 hour continuous drip, on a lower calorie, higher volume concentration. Miraculously- she started eating by mouth!! She not only allows us to feed her, she opens her mouth and signs for “more”, and “all done” when she’s had enough. I never thought I’d see this day!! Now, I’m stuck.. How do I get from here (eating 4 baby food jars per day) to completely off-tube. GI doesn’t give me support and I’m at a loss. Anything, ANYTHING, would be helpful at this point. I’m scared to stop the drip, as she’s not drinking yet, but I also don’t want to overfeed her causing her to stop being hungry. Any reccomendations? I appreciate your support, and help!

  12. Kristin says:

    This is a hard spot to be in…knowing what the next step is without the support of GI. I too found that the GI docs were not on board with us weaning. I think they are so worried that they’ll get sued if something would happen it inhibits them from truly offering helpful advice.

    Had I waited for their “okay” I’d still be waiting I am sure. It is very scary though to feel like you have to do it on your own.

    When Ryan wasn’t drinking I felt I couldn’t fully wean him either. The day he started drinking was the day I knew we could take the full plunge. Any hint at her starting to take liquids on her own?

    Will she take anything from a syringe, or anything else? Have you tried the honey bear cup?

    http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

    The fear of him becoming dehydrated definitely prohibited me from weaning more aggressively when he wasn’t drinking. If she’s capable of drinking and just isn’t doing it and needs to become “thirstier”, then perhaps decreasing the drip a little at time while monitoring closely. Yet if she’s not capable of drinking and you have no other way to get her hydrated, then that’s a tough call to be able to get to the next step quite yet. The good news is that it sounds like she WILL get there! After almost 3 years on the feeding tube I never thought we’d be where we are today, but it can happen. I like that she’s able to sign more and all done too. It really is helpful when they actually seem to know that they are full or not to help guide us in not over-feeding.

    The honey bear cup did it for us, but it took a while.

    Good luck and keep us posted!
    Kristin

  13. Delia says:

    Hi, my son Paolo (who is now 3 years old)was born very premature and only weighed 1.5 pounds. He was in intensive care for 3 months and I got to take him home when he weighed 4 pounds. As soon as I got him home he started with vomiting and had terrible reflux…after 6 months of intense vomiting he started to refuse to be fed and his weight plummeted. .Eventually, he ended up having a gastrostomy. This was a huge relief at the time as we were now able to feed him though he still vomited most of his meals. I never stopped giving him water or a few ounces of milk via mouth as i had been warned that he could forget how to swallow if I didnt keep him orally stimulated so I would feed a small amount daily with a 5ml syringe. He started sensory therapy about 2 years ago which has also been a great help in getting to accept food or special therapeutical objects in him mouth. I decided about 1.5 moths ago to start weaning him so I read the graz information and prepared myself mentally…I stopped all day feeds and kept 1 night feed of 8onz. After a few days he started eating and eats pretty well. My problem is that he will only eat pasta and not much else. He prefers to go hungry rather than eat fruit, meat, veg or soups or even his milk. This is where I have become stuck. I have no clue how to get him to try new foods. I have tried letting him go hungry but it is useless. So I would really appreciate any advice on this.
    Delia

    • amberhj says:

      Delia, how are things now? It sounded very encouraging–he was eating and variety should come in time! I’m sorry, somehow I missed your note here until now!

  14. Mary Beth says:

    THANK YOU! I found this at the perfect time. My son started using an ng tube at age 2 because he had several serious illnesses starting at age 1 that resulted in the FTT diagnosis. He was a preemie, but a normal eater up until that point! He lost weight, lost the urge to eat & it was becoming clear that we needed to intervene to nourish him to help him grow – that was the immediate need. Now he has gained a ton of weight (height has not yet recovered) & is a healthy happy developmentally on-target almost 3-yr-old. Except the ng tube. He eats, but only with prompting. Same with drinking anything but water. He gags at the first bite, but then seems to get over it. We’ve been able to preserve meal time as “for the purpose of eating” – he always sits with us & always takes a few bites. It is really time for him to be OFF the tube, but everyone is telling me that he is going to need an intensive feeding program to do this. I just can’t wrap my head around that. He has no idea what it feels like to be hungry, & he always has something in his throat. Of course he doesn’t eat!! Do they mean to tell me that, if I take both of those factors off the table, he still won’t eat?

    I will be eagerly reading the research to be able to form my own informed opinion. We still have appointments with the feeding institute, but I am eager to go with more information of my own.

    Thank you!

    • amberhj says:

      Wow! He sounds like an ideal weaning candidate. Good weight, able to eat, etc.? Sounds like he will do great. Please keep me posted! Would love to hear about your weaning experience! Best of luck!

  15. Amy says:

    My 6 month old son was diagnosed with laryngomalacia, acid reflux, and inefficient swallow with coordination problems to his suck reflex at 3 weeks old. He was in Akron Children’s for 4 days and we were sent home with our son having an NG tube. He had stopped nursing at 3 days old, and cried and screamed for three weeks day and night, and did not gain any weight, atleast not much. I would sit in the rocking chair, with him for hours trying to get him to drink his bottle. The doctors said it my was persistance that kept him thriving. Now, my son is dependent on his tube feedings even though we give him an oral feeding at the same time as his tube feeding, he’ll just kick back and let the tube fill him up. We are just beginning to wean him from the tube, his oral intake is only one ounce, then we make him wait for 3-4 hours for another one ounce oral feeding, then another 3-4 hours for another oral feeding to build up his hunger drive, hoping he’ll want more and drink to satisify himself. I feel like I’m starving my son. We are to give him a tube feeding after that 3rd oral feeding. Now he doesn’t even want all of that, it’s like his stomach is shrinking or something. I think I’m over eating to compensate for my son, putting on his weight for him. I wish I had a magic potion to give him the ability to swallow sufficiently or just give him mine, I could stand to lose this weight. He’s so happy and good natured, now that his tummy isn’t hurting him, he still spits up, and he still needs his Prevacid, and he’s so active. I just want so badly to get him eating and eating well. We introduced rice cereal with a little baby food, he lets me put the food in his mouth, but doesn’t like it, but he can swallow it!! Just getting frustrated and feeling so bad for him~ I can’t wait to read these articles, hoping to get a how to do it approach!!

  16. Lynn says:

    HI Amber, My daughter has been tube-fed for the past twelve and a half YEARS. We have been through so much speech therapy, with the BEST feeding specialist in the Chicago area, who is now retired 😦 That therapist used the phrase “carefully controlled hunger” as an aid in getting natalie to eat more voluntarily. However, there were no doctors who would offer calorie counts, etc. to guide us in this venture. Being a Mom, it was very hard for me to feel comfortable NOT feeding my child and I think I just didn’t let her get hungry enough.

    When Natalie was 2, we went to Cleveland’s Rainbow Babies and Children’s Hospital for 11 days for their feeding program. They offered follow-up via video, which we participated in. The conclusion was that we “did everything right” and until her sensory issues could be more dealt with there were no gains to be made. Their method had more to do with positive reinforcement, ignoring child when crying during feeding (not self-feeding), etc.

    I have embarked on a “program” of my own. Natalie likes pizza and I just don’t feed her at lunch or snack time. Invariably she goes to the refrigerator, pulls out some leftover pizza and asks me to cut it up. She eats until she is full and then is done. She will not do this four times a day, and she eats very few other foods – none with great nutrition.

    My mother-in-law told me about the program in Graz. I read about it and felt sick. Not because it sounds like a bad idea – it is probably the only thing that will work. But because it scares me. I am not a fearful person. However, I have spent 13 years trying to keep my daughter fed and alive, trying to “normalize” tube feeding because it is such a part of her daily life, teaching school and babysitters, relatives and friends, to feed her so she can live! To give that up feels like a death sentence. I know that feeling is a lie, but it is there to wrestle with nonetheless.
    I have long been feeding her blended meals in order to give her real food instead of “formula”. I even host a blog about it … http://www.pedalingbackwards.com

    Natalie also has hypotonia which makes eating a slow and laborious process. That is nothing but a tangential issue, of little concern, but I feel the weight of all her issues, of keeping her healthy, etc. I want to do this. I will do this. I am terrified at the same time.

    Thanks for these posts and this info. It is very helpful – it personalizes the info from Graz and makes it more real to me. It used to be that my greatest hope was that my daughter would live. Then it became the greatest hope that she would read. She is living. She is not reading. Now my greatest hope is that she could get rid of the tube.

  17. Daniela says:

    Thank you so much for writing this and providing the links to the papers. It really is an area that is lacking information and support. I’m appalled that the medical community is giving such little attention on how to safely and effectively wean these babies from the feeding tube. Our son is 9 months old, was born premature at 33 weeks and had terrible gerd that left us with an oral aversion and a title of failure to thrive. We’ve been hospitalized twice now, the last time we came home with the feeding NG tube. We are on our third tube and each has affected him differently in terms of side affects; the intensity and frequency of the gaging, choking and vomiting syptoms have greatly varied. Clearly this is a major quality of life issue. My son thankfully no longer has an oral aversion but he has no interest in his bottle. We feedhim 3 oz/meal orally. Whatever he doesn’t complete we are to gavage thru. He is taking a whopping 15 mls/feed on his own! At night we hook him up to a pump that continuously feeds him so while it’s great and we all get to sleep he has no oral participation. I do need to express that I am grateful that there is a way my son can be guaranteed a certain number of calories. He has grown some and has more energy and is a happier baby. That is huge and I don’t want to undermine the significance of that but isn’t it time to start thinking about how to reach him to eat on his own???? We were told that when he consumes 75% or more for a month then we could take out the tube! Seriously??? I mean it sounds reasonable but not when you look at how much he is taking. It’s probably about 5% of his feads. They say as he grow his stomach will get bigger, he will tolerate more and he’ll be hungrier. So we are waiting for anotomi al growth then??? Is there no technique to encourage him to eat on his own? We do see an OT and a pt but they don’t see an aversion and neither do I. My son just has no interest and why should he, he is being furnished with all the calories he could dream of without the bad memories of a milk bottle, how safe for him. I cannot believe that there aren’t techniques and that situations such as these don’t deserve more attention other than just to wait for anatomical growth. What about his quality of life in the meantime, what about all of our quality of lives???? It’s crazy.

    Anyhow thank you so much for listing all that. It sounds great and it was wonderful to see that someone out there is actually giving this the attention it do rightfully deserves. It does sound risky to do all this though without the intensive institutional care they provide. I would be nervous. I would love to have the opportunity to speak to you if you are open to it.
    Thanks again for your support, for making a difference and for taking the time to read my ranting and raving venting (Iust admit I do feel better though).
    With much warmth and appreciation,
    Daniela

  18. Clau says:

    How do I contact Markus? Does he goes to your home? Does insurance pay? Please help me to get my son of tube if you can email me private
    Thank you
    Clau

  19. Holly says:

    Hello!
    I have a couple questions for you. My son is 8 months old. He is a bottle refuser since birth. Breastfeeds small amounts in his sleep and NEVER seems hungry. I get him to take some solids but am fighting a ng tube. There is a feeding clinic in VA that is willing to help but not until August. They are affiliated with Markus Wilken. My son, Seth, has passed a swallow study, has mild laryngomalasia, and some reflux. Any advice or tips would be HUGELY appreciated. Thank you!

    Sincerely,
    Holly Bangert

  20. Tara says:

    I just wanted to thank you for the very helpful information. My son baby “Z” was a twin birth born at 25 1/2 weeks, weighing 1lb 13 oz. His twin brother baby “R” lived for 4 days due to level 4 brain bleed on both sides. After 3 months in the NICU, we were able to take baby “Z” home with us.

    Baby “Z” loved eating from the bottle, had occasional reflux and vomiting, and was fed Similac Neosure for the first 7 months. Then over the course of 6 weeks (at almost 8 months) refused to take a pacifier and a bottle. After consulting with our pediatrician, we took him to the hospital and he they considered him “failure to thrive.” He only weighed 9lbs. After a series of tests, upper, lower GI, modified barium swallow, gastric emptying study, feeding study, the nutritionist and GI doctor were unable to properly diagnose our son. Every test came back normal. We even met with a geneticist and ran a brand new test that looked for Genetic diseases, and again, everything came back normal.

    Meanwhile, baby “Z” has had an NG (would scream and cry when food touched his stomach) NJ and now he has GJ tube. He is currently on tube feeds, is 16 months old, and is a healthy 24lbs. His main problem other than the aversion to food, is that he retches every few hours. For any parent that has to experience this, it is terrible to watch your child suffer. We wish there was something that could help eliminate the retching. We have tried so many things, and he still retches. Each time we try to introduce food the retching gets worse. We have a feeding therapist that visits our home once a week for oral feeding therapy. We have tried applesauce, yogurt, pudding…and he is not interested too interested, although, he can swallow food. Baby “Z” has started to put toys in his mouth, and lets us touch his face which is a huge step in the right direction. It is our hope to wean him off of the this tube feedings sooner than later. I refuse to give up, and would love to hear your suggestions!

    Thanks so much!!

    Hugs,
    Mommy T

  21. nadia says:

    My daughter was born with Av canal defect she was doing fine enough to come home a week later she was hospitalized cause they found a intestinal stenouses so they had to operate since then for 3 weeks now she had a ng tube in her heart surgery is put of until 4 months of age she will be 2 months soon she is showing no interest in swollowing and i am having a hard time with it since she can not be realised till she does fine on bottle its frustrating with 3 other kids home husband who works nights i cant be with baby mariya all the time i need pointer tips help so i can work with nurses and Dr to ween Mariya off please any info

  22. Noelle H says:

    Thank you so very much for posting this. My son has been tube fed for 87 days so far. He developed dysphasia while recovering from open heart surgery. I have found myself depressed because he shows no interest in feeding. In fact he is extremely orally defensive. Thank you for giving me hope.

    Noelle

  23. itsthelittlethings2012 says:

    I just randomly came accross this post by googling “NG tube weaning!”. I’m from Australia and my 4 month old baby is NG tube fed, needed it whilst having open heart surgery etc, so now 3.5 months on she refuses to breast or bottle feed, it’s not that she can’t she is just scared! She gaga when she swallows and screams if I put a bottle near her! So I’m very glad to of come accross the articles ! Thanks ! Meg

  24. Joy says:

    great information thanks so much for sharing, my little one has a food aversion from her NG tube and we about to take the tube out so great to find some extra resources. i am in australia too!

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