Thursday, March 18, 2010 Nupur Goyal asks

Q: Infant GERD, sleep feeding and Feeding tube

I have a question about using feeding tubes for babies who will only sleep feed. My baby boy (Varun, 15 weeks old) suffers from acid reflux and will only sleep feed. The problem is that he is sleeping less and less everyday and it has become really difficult to feed him. When he is hungry, he cannot sleep, and unless he sleeps, we cannot feed him :(

We have even tried giving him pedialyte instead of formula but he refuses to take the bottle in his mouth when awake. I worry about Varun dehydrating all the time and am also tired of trying to force the bottle in his mouth 24/7. I am frustrated enough to ask his GI for a feeding tube and would like to know the opinion of other experienced moms on this forum. Specifically,

(i) What are the disadvantages of using a feeding tube for sleep feeders ? I am going to feed him orally as much as possible and would like to use the feeding tube only to supplement

(ii) How does one decide between a NG tube and a G tube ?

Thanks in advance

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Answers (3)

Jan Gambino, Health Guide

3/19/10 6:13am

Hello Nupur,

You are asking a really good question. I hope others will add their experiences and comments to this conversation.

In general, babies with feeding issues such as sleep feeding are able to nurse or drink from a bottle. Even if they are on the edge of dehydration, they will take in just enough and not a drop more. It gets really scary when a baby in that state gets sick or in the case of sleep feeding, sleeps less and less. Then you and the doctor may worry on a day to day basis if enough calories and fluids are going in to your little one.

Nasogastric or NG tube feeding is pretty extreme and is used only as a last resort when other treatments and techniques have been tried. It is often used as a short term rest for the baby and the family. Even a little baby knows when a parent is worried and he/she may respond by eating less or sleeping less.

NG feeds are useful for:

-increasing intake when there is a mechanical problem (oral motor) with feeding

or when there is a need to hydrate a baby

-increasing weight

-taking the pressure off of the baby and the family to ensure adequate intake

-allow the doctor to assess the feeding/medical problem a bit more.

-allowing the baby to take in calories while awake, during the day

-allow a baby to receive nourishment even if there is fear of eating/feeding aversion.

NG feeds may:

-lead to dependency on tube feeding if the child becomes less interested in oral feeding and developing new feeding skills (this is often short term but it can be long term too)

-the NG tube may be uncomfortable and cause swallowing to be uncomfortable

-Tube feeding may lead to over feeding and cause discomfort and a worsening of reflux. A child who is full of milk will stop eating. With a tube feeding, it is hard to know when enough is enough. If too much liquid is in the stomach, it has to go up or down. Often this will improve over time.

I know of only one sleep feeding child who needed a long term feeding tube. That is not to say there was only one...I am sure there are more. There were others who had tube feeding for short term or discussions with the doctor about whether tube feeding was needed. We desperately need more research on sleep feeding. Meanwhile, we will continue to discuss this perplexing feeding problem parent to parent and learn as much as we can from the experience of others.

I hope you will contact other parents of sleep feeders on HealthCentral. Just click on the members name and a window will pop up allowing you to send a confidential message directly to them. You can certainly continue to post a Sharepost or reply to messages. I like replying to the Shareposts because there are some who reply and many others who read the messages every day. We are all helping each other.

Lets hear some more voices: NG tubes pros and cons, sleep feeding ideas and anything else related to caring for your infant or child with reflux.

Jan

Nupur Goyal

3/19/10 3:01pm

Hello Jan,

Thanks a lot for your reply. It is immensely informative. I am also reading your book now and hopefully, that will calm me down a little bit.

I guess, a NG tube is really not an easy choice. What about the G tube that is inserted directly into the stomach ? I will love to hear from Moms who have experinece with tube feeding.

Help, please !!!

Stephanie, Health Guide

3/19/10 10:20pm

I have worked with many children who have feeding tubes. I agree completely with Jan about the advantages and disadvantages. If my child needed one though I would only consider doing an NG tube as a trial not as a long term solution. Yes, the g-tube will leave a permanent scar (albeit small) but the NG tubes are uncomfortable and they often get pulled out.

I have had many parents feel relieved when the tube finally went in. All of the stress about trying to get food in is gone. They then can do feeding as practice more than anything. But, they also often say that it takes longer to get rid of it than they expect. Most babies start out with continuous feeds which means they never establish normal hunger cycles. Without hunger cycles they are unlikely to want to eat from a bottle. Many of our refluxers need continuous feeds when tube fed because like Jan said it is hard to tell how much their babies will tolerate and on top of that there is normally a period of time where the docs are trying to put on some weight and feed them more.

I guess my biggest question is whether or not all of the medication avenues have been tackled with your little guy. Are you seeing a pediatric GI specialist? Is your son's weight being closely monitored? Does your doctor realize how bad things are at this point? If not, you may want to make another appointment and write down what a typical day is like. How much he's eating and when. This might help the doctor see how things are going.

Best of Luck - Stephanie

Nupur Goyal

3/20/10 11:42am

Thanks Stephanie. I have been keeping a log to monitor Varun's daily intake and will show it to his GI. Most of his feeds are less than 2 ounces and that too, when he is asleep. I will try my best to convey to the GI that this is not normal or sustainable. A feeding tube will give us the time to play and engage in activities other than trying to feed him.

Anyone knows of a support group for RefluxMoms on the east coast ? I am looking forward to meeting other parents struggling with feeding issues.

Stephanie, Health Guide

3/20/10 12:50pm

Where are you on the East Coast? Kennedy Krieger Institute in Baltimore has a feeding clinic and I would think that they would know of any support groups in the area.

Stephanie

Jan Gambino, Health Guide

3/25/10 6:08am

Hello Napur,

Please send me a private message and let me know where you live-I will try to link you up to other parents on the east coast.

When my reflux baby was struggling the most with her reflux, I found some Reflux Moms nearby like Stephanie and others all around the world who offered me vital support and information. So whether you find a Reflux Mom in your neighborhood or in another country, that network of support is so helpful. From the responses to your message, it sounds like your network of support is growing already here on HealthCentral!

By the way, you will see in my book that my reflux baby eventually needed a gastrostomy tube. I resisted the tube for a long time because I believed that it would signal that I failed as a mother. If I couldn't feed my baby, I must not be a very good mother...not true but that is how I felt. Like Stephanie said, the tube brought much relief and made feeding much more enjoyable for everyone. I didn't have to worry about each calorie and my daughter could eat as much or as little as she wanted.

I agree with Stephanie that it is important to navigate through all of the treatment approaches first. If your doctor is not familiar with sleep feeding, it may be necessary to spend some time explaining exactly what you are doing and how long it takes for a feeding. There is nothing better than a live demonstration of the problem. Bring a bottle to the next appointment and show the doctor what happens when you show Varun the bottle when he is awake.

Best wishes,

Jan

matteo'smom

3/22/10 5:13pm

My 3 month old son just had a feeding tube put in. He also suffers from acid reflux and will not drink from a bottle anymore. He was lossing weight so fast that we had no choice. He needs to eat. At every feeding I offer the bottle, he will take 1-2 ounces and the rest I put in the tube. He growing slowly, but is getting there.

The only problem I have is that he keeps pullinmg it out, other then that it's not so bad.

Lisa from Canada

Nupur Goyal

3/23/10 9:13pm

Hi Lisa,

First of all, thanks a lot for replying to my post. I know you must be very very busy, so I appreciate your message.

Can you tell me what kind of a tube your baby is using ? Does it go through his nose ? Was it painful when it was put in ? How often do you need to clean it ?

I wish you and your family lots of good luck.

Thanks again

matteo'smom

3/24/10 2:59pm

My son has ng tube. It goes up the nose, he does not mind it at all. Sneezes mostly during and after, but never cries. He has gotten use to it I guess. (I on the other hand, have not). My son's gets change evry morning, only because he is now tube fed during the night. Why does your child need it? Because of the acid reflux being severe? You can email me anytime. Thanks and all the best.

Lisa

matteo'smom

3/24/10 2:59pm

Lisa

Q: Infant GERD, sleep feeding and Feeding tube

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