Feeding Tube for night feeds

[Anonymous]

We just saw the GI yesterday, she’s one we haven’t seen since September because our insurance changed, but she is the best GI we have seen so we went back to her. Anyway, she said she was concerned he had not gained more weight and she wants him on a feeding tube for night feeds. In September he weighed a little over 18 pounds and yesterday he weighed in at 23 pounds, so only a gain of a little over 4 pounds in 9 months. She said he should have gained twice that. He has been keeping on his own growth curve and has actually gotten closer to being at the bottom of the chart. I was surprised she mentioned wanting to do a feeding tube. I expressed concern about having to put a tube down his nose every night and how to keep him from pulling it out. He is VERY active and trying to keep the tube in for the ph probe overnight was hard enough. He has been off reflux meds for about a month and has not really had any reflux symptoms, although it has been hard getting him to eat and drink. I’m very stressed by all this and am expecting another baby in October. We really thought everything would be figured out by now. I’m thinking maybe we should try putting him back on the reflux meds to see if he starts eating again. Maybe he’s silently refluxing and we don’t know it. I think the tube feeding would get him the calories he needs, but I’m not sure it’s absolutely necessary. At 24 months he’s 23 pounds and 33.5 inches, obviously on the small side. Well, these children definitely are not easy to figure out, aren’t they!

[Anonymous]

My Christian is two days younger than your Justin. At his check up he weighed in at 23.54lbs and 35inches tall. Christian has had a g-tube since he was 10 months old due to reflux and non-eating.

You mentioned he is following his own growth curve, even if it is not “on the chart” it is still gradually increasing? I think that is the overall concern for our peds/gi/nutritionist. The reason that Christian got his tube – was that he stopped growing for nearly 6 months. We tried the ng tube and he refluxed it up nearly every night and he too was a fighter and we could not put it down ourselves and did not have a nurse to help. We were forced to do an ER run each time and I demanded the g-tube. Now our situation is different than yours.

Did Justin stop/decrease his eating since the prevacid stopped? I would think that would be a better option than possibly causing an oral aversion by shoving a tube down every night. But that is my opinion. Are they willing to see what happens over the next few months or was this a big “push” at the GI?

Decisions are hard – I am sure you will come to the right conclusion for your family.

[Anonymous]

I would also say G-tube would be a better option. My son was much younger when we had ng, but it was a nightmare at that age to keep it down. I continued with a bottle no matter how little he took from it to discourage an oral aversion.

Also, he was a worse refluxer with the ng as it doesn’t allow the sphincter to completely close and with a child who already has reflux, it seemed to make the spitting so much more! I never knew how much he was losing with that. I changed a lot of bedding in the middle of the night!!!!

Also with the G-tube, it’s permanent for awhile, it will be easier to administer feeds without him noticing and therefore drawing less attention to it so he will most likely not be messing with it.

With adults, they put a girdle around it with velcro for easy exposure and closing. We use it at the hospital for head injuries, etc who pull theirs a lot. I would think someone would have invented something like that for kids……

[Anonymous]

has your doctor offered any other suggestions for putting weight on him before doing tube feeding? if he is following his own growth curve without lots of dips, then it may just be that he is going to be small. my daughter weighed 22 lbs when she was 24 months old. she had already had a fundoplication done right before she turned 10 months old. we really worked to avoid getting a feeding tube. it turned out that she had developed an esophageal yeast infection and then obstructive sleep apnea. once we figured out the cause of her failure to thrive, she has done great.

the most important thing to consider, though, is whether or not your child is at risk for stunting his overall growth potential. it is my guess that this is why your doc wants to consider tube feeding. if you can get calories in him in a different way that will be great, but he may end up needing the tube feeding if he won’t eat on his own.

sounds like he still may need to be on prevacid.

[Anonymous]

I was also wondering if you could increase his calorie intake before resorting to a tube. I don’t know what he’s eating or drinking, but could you try something like Pediasure or just high calorie foods? If he’s drinking milk, you can even add powdered milk to it to increase calories. Just some ideas. It just seems like it would be easier to try increasing calories first before resorting to an ng tube.

[Anonymous]

the first time a tube was suggested for sylvia, i don’t remember how we got the weight on. the second time a taube was suggested, i put her on pediasure. i don’t think she liked it at first, but i kept working at it until i got her to drink it. i got the weight on her, but it was just a bandaide, basically, at the time. we needed to find the root of the problem. once we found that, the problem went away.

[Anonymous]

Karen

I really have not been following your son’s story so i apologise for it in advance… i kind of agree with others… there are so many options before a tube is put in. And yes, you may think that 23lbs is small but if he looks healthy to you, then there are other options:

1. i would def try the meds first — I thought Matthew was reflux clear and his last endoscopy showed esophagitis while on meds. You could have never told (i think because he was in so much pain when he was younger, he felt nothing then or not enough to complain)

2. are you seeing a nutritionist? That is usually what our GI recommends next… because they want to make sure they are eating foods to help with weight gain and growth but also they want to make sure that something else is not going on (Ie they should be gaining when they are not etc). I agree with others, pediasure or evevn Carnation Instant Breakfast to flavor the milk, Duocal etc. Does he finger feed? Does he let you feed. At Kennedy Krieger they actually go back to feeding some purees to kids that are not gaining and therefore avoid a tube that way

3. Yes, the NG is hard to keep in but it can be done and my personal opinion — you always want to make sure that tube feeding is going to help so you try the NG first… but you have to do what you think is best.

Good luck with your son. HUGS

[Anonymous]

I’m sorry to hear that your GI is talking about the tube. I agree with others that I would give the meds a try again just to make sure that he’s not silently refluxing. We’ve always kind of been on the verge of the tube, but have managed to get weight on Hailey by adding calories to the things that she does eat and supplementing. I would also try the pediasure and see if that helps. I think with the weight gain, it’s more important to look at the feeding behaviour, the overall health of the child, and the child’s individual curve. I don’t think that they’re expected to gain very much in their second year, at least from what we’ve been told. Hailey was 25 pounds at 15 months, then she started losing weight when she started day care, lost about 2 pounds or so, and now is just around 25 pounds again. So really, she hasn’t gained anything in 9 months. Our doctors are not concerned for some reason, I think b/c she’s doing fine otherwise. I would try to get some feeding therapy, even through EI, if the feeding behaviour doesn’t seem right and if you just can’t get him to eat. I know how frustrating it is. HUGS.

[Anonymous]

Thank you for all your replies. I’m sorry I didn’t respond sooner. A week after I posted, I lost a baby at 20 weeks and haven’t been checking this site as much. During the same week I lost the baby, my son had a week long vomiting episode where he couldn’t keep anything down except pedialyte. This past Tuesday he had an evaluation at Kennedy Krieger Institute in Baltimore and they diagnosed him with Cyclic Vomiting Syndrome, dysphagia and feeding problems. They do not think he needs to be on reflux medicines because he had non-acid reflux and most reflux medicines are for acid reflux. They did say Periactin would be something to try for the Cyclic Vomiting Syndrome. I’m not sure if that’s an accurate diagnosis but it makes sense because my son seems to get really sick once a month with vomiting, even when he was on reflux meds, and then would be completely fine, except for the refusing to eat. With starting Periactin, it seems he already started eating a little more. He is being admitted to the hospital on Monday for an NG tube, but I’m still concerned about getting the tube. The doctor wants us to put it in every night rather than keep it in all the time. I don’t really like that idea, but I want my son to catch up on growth and I can’t get enough calories in him during the day. His height to weight percentile is good at 23%, but his weight by itself is barely 3%, which dropped from 50% when he was born, and his height is now around 5-10%, which also dropped from 50% when he was born. His projected height is supposed to be around 5″6, but where he is now would put him at an adult height of 5″2. That is the reason we are even resorting to the tube. He has an intolerance to milk, so we cannot use all the high calorie dairy options that are out there. He is on a high calorie medical formula, but even then it’s a struggle to get him to drink as much as he needs to. With the tube, the days will be less stressful and hopefully the feeding program can get him to eat more by mouth. Thanks again for all your replies. They have been very helpful.

[Anonymous]

germantownmom wrote: Thank you for all your replies. I’m sorry I didn’t respond sooner. A week after I posted, I lost a baby at 20 weeks and haven’t been checking this site as much. During the same week I lost the baby, my son had a week long vomiting episode where he couldn’t keep anything down except pedialyte. This past Tuesday he had an evaluation at Kennedy Krieger Institute in Baltimore and they diagnosed him with Cyclic Vomiting Syndrome, dysphagia and feeding problems. They do not think he needs to be on reflux medicines because he had non-acid reflux and most reflux medicines are for acid reflux. They did say Periactin would be something to try for the Cyclic Vomiting Syndrome. I’m not sure if that’s an accurate diagnosis but it makes sense because my son seems to get really sick once a month with vomiting, even when he was on reflux meds, and then would be completely fine, except for the refusing to eat. With starting Periactin, it seems he already started eating a little more. He is being admitted to the hospital on Monday for an NG tube, but I’m still concerned about getting the tube. The doctor wants us to put it in every night rather than keep it in all the time. I don’t really like that idea, but I want my son to catch up on growth and I can’t get enough calories in him during the day. His height to weight percentile is good at 23%, but his weight by itself is barely 3%, which dropped from 50% when he was born, and his height is now around 5-10%, which also dropped from 50% when he was born. His projected height is supposed to be around 5″6, but where he is now would put him at an adult height of 5″2. That is the reason we are even resorting to the tube. He has an intolerance to milk, so we cannot use all the high calorie dairy options that are out there. He is on a high calorie medical formula, but even then it’s a struggle to get him to drink as much as he needs to. With the tube, the days will be less stressful and hopefully the feeding program can get him to eat more by mouth. Thanks again for all your replies. They have been very helpful.

Karen I am soo sorry…HUGS!!!!!

KKI is GREAT at what they do and they should be able to give you all the help you need.YAY!!!!!!

BTW there are several MOmmies on P2P that have CVS…they may be able to anser ?? after th esite ocmes back up.

[Anonymous]

well I will give you another thought

My little Destiny is 23 months and is 31 inches and is 21.1 pounds only she has had a g-tube placed and a fund plus a pylo-plasty done in Sept of 2007. She has been on continous feeds since Feb 2008.. Plus she is on Pediasure and still on all meds… She has had reflux symptoms back since March of 2008 and this whole time we thought it was just post op taking time to heal and to find out with an endoscope her reflux is back and fundo has slipped.. So your lil guy is not that small my lil one is tiny for her age still in size 3 diapers

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