Maya since she was been eating on her new hypoallergenic formula has been refusing feeds or taking a maximium of 8oz a milk in a day. If she has to be tube fed, will it help in the short term/long term or make it worse. My original GI hated tube feeding and said it would open her stomach/make reflux worse and her feeding aversion worse.

My new GI said that he would consider it as an option. I was wondering whether tube feeding over night would help or make things worse? Could the tube feeders give me their honest opinion on this?

Sorry, no experience with tube feeding here, but others with the experience will be along I am sure. Becky is off this weekend but should be back early this week. I will keep track of this post and if you do not receive replies let me know and I will hunt down someone for you, ok?:-D

I tend to feel that your first GI was a little more accurate. Tube feeding can lead to increase in reflux symptoms and sometimes other subtle GI symptoms that were not present before. Also, tube feeding even if it is only at night can lead to oral aversions if not watched very closley. Also the risk of tube feeding a refluxer at night without a nissen can increase thier chance of aspirating and that can lead to chronic conditions as well. It all really is a catch 22. Is Maya Failure to Thrive ? I know it can be very trying when you want & need your little one eat. Has your GI sent her to a feeding specialist ? Has she had testing done to rule out Delayed Gastric Emptying ? Noah always did much better with his tube feeding during the day instead of night.

Sam had a NG tube for about 2 weeks before his g-tube was placed. He did much better with the g-tube. The NG tube was very irritating for him. He gagged a lot and I could only do a very slow drip so he was on the pump all day and night for the most part. I think all kids react differently to the tube(NG), some tolerate it better than others--it can be very irritating if done for a long period of time.
Sam always did better with his day feeds. He does not get fed at all during the night now.

Shae-Lynne was n-g tube fed only b/c she completely refused to eat anything from the moment of birth. It was really horrible. Roni was trying desperately to breastfeed.

When the n-g was removed they did surgery to insert a j-tube. It was the worst time of Roni's life having to make that decision and yet it really was not HER decision. Shae-Lynne would not eat.

Today she is still only about 30/32 lbs. at 5 1/2 ys old.

I agree with everything Katie said, just wanted to add my comment. I am sure if Roni reads this post she will also respond. I think you WILL know when/if it comes to tube feeding. It is really the last choice and only if they are failure to thrive.

Best wishes
Jean

Jean

Thanks for your honest comments here. That certainly puts things in perspective. I certainly am going to fight to try and get her to eat properly before going for the tube feeding option.

Yes, I definitely tend to agree, last resort. I saw Shae's eating go from 1 ounce (that's all she'd ever take but it was at least something) down to absolutely nothing after a few months of the tube feeding and I hear that same thing repeated over and over again from other tube feeders. It just causes irritation, discomfort and major oral aversions.

Now certainly, that's not to say that every single kid who's ever been tube fed has had these experiences. I think there have even been a few on here that have tube fed periodically and not lost any oral feeding skills, I just can't think of who right now, sorry. Hmmm, Alexys maybe...?

Alexys was on a NG tube for a couple months, and then only at night for a long time....still at night occasionally. The only difference with our situation though was that ALexys would eat, just not drink...and she pukes so much she didnt keep hardly ANYTHING down. She was losing weight fast because of low fluids and what she was taking in by bottle she would just puke back up. The NG tube did make things worse as far as puking more, irritation, etc but we were very lucky that it didnt seem to affect her eating skills like Roni said. We have been extremely close on more than one occasion to getting a J tube, but we managed to avoid it through supplementing calories/fat and ng feedings at night. In my opinion I would try every other possible route before going to a tube, especially if she WILL drink...even if its a small amount.

Thanks for all your comments. I am managing to get Maya to take some formula now by flavouring it so I hope that I can follow your recommendations to hold off on the tube feeding as long as possible.

Wow. I haven't logged on in quite a while. Started work full-time again...

Anyways...Samantha has had her NG tube for about 1 month now, and we absolutely LOVE it. We are lucky that she has been tolerating it fairly well. Just some background on her since we haven't been posting on the forum for a bit...Samantha has a small heart condition that makes feeding more difficult (she gets super tired), has reflux, is on hypoallergenic formula now for about 4-5 months. She is FTT also. The GI and cardiologist and ped wanted her to get an NG tube, so she could gain some weight. So far, on the tube, she's gained *almost* 2 lbs. We are also working with a nutritionist.

She does gag sometimes, but it's really not too bad. I do notice her refluxing a little more, but it's still not too bad. She's a silent refluxer so she doesn't puke too much.

The major negative is that after we tubed her, her p.o intake decreased dramatically. But I don't think that's b/c of the tube. She takes her solids really well. I think she just dislikes the taste of the nutramigen. We are starting to get her to take more by mouth, by adding a little pediasure to her bottle. The nutritionist recommended it, to see if Samantha might like it better. We do 4 oz nutramigen + 0.5 oz pediasure (usually vanilla flavor). My daughter's only 7 months right now, but the nutritionist said hte pediasure was okay, since they even give it in the NICU (oh, and we're on 30 cal/oz formula).

Sorry this is so long and babbling...just trying to get it all in before samantha wakes up.

However, I would definitely try the tube as a last resort. Is your child FTT? If so, then maybe that's a bit more reason to try the tube? What are your main concerns: Weight gain? nutrition? calories? etc... How much formula is she taking now? There are many methods to increase the calories your child intakes...I'm more than happy to share what I've learned through my "journey" (lol...oh a journey it has been!) -- just not sure what your specific needs are.

Another post...I just realized how much I complained on the forum about the NG tube just a few weeks ago! Needless to say, things have improved quite a bit. Samantha is also learning to drink from a sippy (we started her about 1.5 months ago), and I think she's finally getting it. She drank 2 oz through the sippy cup at lunch, and 1 oz for her late afternoon feed. (And she totally refused the bottle...I figure she's trying to tell me she's a big girl now=) I've tried all different kinds of sippy cups, and my favorite is the disposable first years cup. It's really light, so it's easy for Samantha to hold by herself. Plus it's clear through the spout, so you can see how much liquid is going into her mouth.

Now that I look back on my experience getting started with the tube, I know my docs knew what they were talking about...Good luck with everything!

Sorry to butt in on your post Maya, but we are struggling with similar circumstances....I have a question for Samantha's mom: what things have you tried to increase intake?

Gavin likes to eat food but does not like to drink. He isn't growing well at all! He is on Nutramigen, because he is allergic to milk and soy--so the pediasure would not work for him. I plan to try Maggie's idea of adding puree to the bottles, any others????

Sorry to butt in on your post Maya, but we are struggling with similar circumstances....I have a question for Samantha's mom: what things have you tried to increase intake?

Gavin likes to eat food but does not like to drink. He isn't growing well at all! He is on Nutramigen, because he is allergic to milk and soy--so the pediasure would not work for him. I plan to try Maggie's idea of adding puree to the bottles, any others????

Here's some info on increasing calories. If your baby's not eating as much (like mine), we can try to increase the # of calories per ounce of food or formula, without dehydrating her.

As for baby food, the ones with DHA/ARA are higher in calories. Beech Nut First Advantage is this kind of baby food. If you make your own baby food (we do both), definitely stick to the higher calorie foods. I'm trying to find the list the nutritionist left for me...when I find it, I'll post what she recommended. When I make the baby food, I cook the starch and veggies in the beef broth I used to cook the beef...since the oils in the beef broth will add calories.

You can also add oil (I would recommend olive oil) to the baby food...I know this sounds gross. Both the nutritionist and the cardiologist recommended it. I think it was about 1/8 teaspoon oil to 2-3 Tablespoons baby food. You can mix it right before you're about to serve it. If you're ansy (is that a word?) about the oil, you can add 1 teaspoon formula powder to the baby food instead of the oil.

Have you tried a higher calorie formula? I think the first step was from 20 cal/oz to 24 cal/oz, and then it usually jumps to 27, then 30. But you can use anything in between -- whatever works for you.

You mentioned Gavin was good with solids? How is that going for you?

How did I miss this? I guess it came up when my parents were visiting, and then I just assumed later I'd responded, since, after all, it IS about tube feeding.

Daniel started out with an NG tube his first 12 weeks since he was born so early that he didn't even have a suck reflex yet. Gradually we got him to take enough that we could bring him home from the hospital and he did not need the tube.

We put it back in a few times when he was about six and nine months old, but it was only for a day or two each time. This was when he was sleep feeding very poorly, and after a few bad days we'd feel like he definitely needed the extra fluid and nutrients. But he'd always start doing it again on his own.

When he was 11 months old and had just had his cleft palate repaired, he completely stopped bottle feeding and we pretty much used an NG tube for the next two months. At this age (and likely due to his sore mouth as well), he just got really lazy and started to not want to eat orally. So the NG tube was a life saver, but it also helped contribute to his problems not just because it allowed him to be lazy, but he also got more orally defensive since we were constantly retaping the tube. And he actually began to throw up more because he'd start to gag a bit, feel the tube move in the back of his throat, and then really let loose. Often he'd throw up the tube. Lots of fun.

Later, when we saw a feeding spec in Denver, she told me that long-term NG tube use can cause the child to develop a sort of "dead" spot at the back of their tongue or in their throats. Basically, they'd become so used to something back there that they'd start to tune it out. She explained that was why D would sometimes "lose track" of food in his mouth.

So I guess the short answer is that short-term NG tube use can be a good thing. It really stinks when you start to rely on it. That's when we finally went to a G tube, which, in our case, has been the best move we've made. But it may not be what you need. Every child is so different.

Good luck!

We fought the decision to do a g-tube/fundo for a long time with Tucker. Finally, he was the one to make the decision for us b/c we could not get enough calories into him PO and NG and NJ gave him sinusitis so badly he'd choke on the secretions. His PO feeding went down dramatically after NG/NJ tubes. He went back up for a little while post g-tube, but has been having a tough time for the past month or so. I agree that it is a last resort, but if your child is FTT you have to do what you have to do to get the calories into her so she'll grow. Good luck.

Hi,
We had the ng tube put in Larissa when she was FTT. From birth she had eaten very little, but I was just getting her to take cereals. She is a refluxer, but did not require a fundo as they wanted to wait. She was eating, but throwing up. After 6 months with the NG (that is too long from what I understand), her throat and nose started to bleed a lot, so we had the Gtube put in. What a relief. Anyway she didn't eat less orally, she was always poor at chewing, but continued to take the purees. Now at 26 months, she will have the purees and some more textured things and will drink juice and water (about a few tablespoons at a time) from a plastic sqeeze tube with a straw, or a bit from a cup, no sippy cup though.
the long and short of this is, my experience is that if you keep offering food orally every single meal and snack time, even is they refuse, you have more of a chance of keeping them oral eaters. Lots of time people have to stop offering because of aspirations and other specific medical conditions. Then it really is an uphill battle. Knock on wood, I have been lucky.

Pamela

Thanks you for posting this. This is where we are at and you ladies gave me lots of good info. The GI Dr is wanting to do an NG tube on Tyler he is 9 months and takes in between 15-18 oz per day. Out of every bottle he takes a good 1-2 oz than will fight with the other 3-4 oz. I am going to speak with our ped this week, I have left a message for her to call me back. The GI Dr did say this would be at least a few-many months. When you say short term what is that? I think 1-2 months and from what I gathered from the GI Dr we are looking at 4-6 months of this. He hasn't tried anything else so I am wuite uneasy about all of this but I do what to help my son. Again thanks

Hugs~
Amy mom to Tyler 33 weeks prevacid 19 mg per day, gast. surgery to repair hole in stomach, Developmental delays, Sensory issues, and feeding issues.

I am a little shocked at how different GI doctors can be. You described my son on a good day and our gi was adamently against tubing him. Our ped was for it, but our ped doesn't do it! We see another GI on thursday, so we'll see what his opinion is.

Does he eat anything? Just 15-18 oz of formula?? Have you tried increasing the calories by doing increased formula powder per oz of water? Have you tried adding oil to his bottle to increase the calories?

My son takes 24 cal per oz, instead of 20 cal per oz, Neocate formula. We tried oil but he refused the formula (he could taste the difference). He will take some pureed jars but nothing else other than crackers. He is 10 months and in the 3rd percentile, although he goes off the chart and up again depending on the week! We are just barely getting by so I am pretty clear that my son is in the in between-- where it isn't clearly indicated but there is enough of a problem to consider it----sounds like your child maybe???

It is a hard call, I don't know what I would say if the doc says that to us on Thursday. What does the doc say about the risk of NOT doing one? Maybe compare the risks of for and against and see the worth in each?

For example, Becky has real issues getting Daniel to eat because he now has a gtube. But she also said it was the right choice for them. She clearly weighed the pros against the cons and was able to make her choice. Sounds like what we need to do!!!! (and all the other moms on here who are in between and have different docs recommending different things!).

Let us know what you decide and how it goes!

Yes he takes the formula (24 cal) and 3T cereal + 2oz fruit for breakfast lunch is 3oz fruit and 3 oz veg's and dinner is the same as lunch. He is getting a low amount but not enough to keep gaining, he has been lossing for over a month now. I almost feel like I force feed him most days as he eats a good 2-3 oz of his food than will stop and seem disintrested! Our ped won't increase his cal's without the GI doing it because he has had surgery on his stomach. Tyler is well below the charts for his actual age and just below the charts (maybe -10%) for his adjusted age. He didn't tell me any of the risks of not doing it but did say he won't give us a referal to a feeding group because it will take to long to get in and we don't have that much time to wait. I agree with you on how much Dr's are so different, with my DD they did tests meds and extra cals until she was gaining again and an NG tube was never mentioned!

Thanks
Amy mom to Tyler 33 weeks