Feeding Tube??

[Heathmcmi]

Our 16 mth old daughter has been diagnosed as "Failure To Thrive (FTT)," she has ulcers from an unknown cause in her sm and lg intestines, reflux, hiatal hernia, esophagal (sp) erosion, febrile seizres, and an 8mm ASD in her heart. Now whether or not her FTT is caused by one or all of her issues; she is having an extremly hard time putting on weight. She was just re-admitted into the hospital for hypothermia like body temperatures. She is now maintaining a healthy temp, but has stopped eating and is barely drinking. They want to give her an IV (after the other two were already pushed out and swelled up her hands and arms) to give her fluid. However, he GI is adament about giving her a G-feeding tube for extra calories. My husband and I feel they should look into whats causing her to not soak up or whats eating the calories she's intaking now (when she does eat) instead of just making her fat. The question becomes to tube or not tube?!?!

[KeyD]

Although I have never had either, I have dealt with patients who have had NG tubes and G tubes and I think the  G tube would be more comfortable--think about the discomfort to her nose and throat. I would think she would be less likely to attempt anything by mouth if the NG tube were in place. And  the ultimate goal is for her to take sufficient intake by mouth. Ask about a mickey tube--the external tube can be disconnected when not in use. Also as a toddler it will be alot easier for her to pull at an NG tube and possibly remove. The Gtube is placed while she is sedated. And no they don't want to just fatten her up, if she is not taking by mouth and doesn't have an IV then she will dehydrate very quickly and become very ill. Good luck with this difficult decision and I hope they fiqure what's wrong with your baby.

[Heathmcmi]

Hello! Thank you for all the wonderful info!!

Reilly is on prevacid and pepcid for the ulcers, and reflux. They do help and when they're at the right amount she eats non-stop. However, she's reached the limit she can get right now because she's at the max dose for her weight. She goes through these periods of not eating and eating.

My daughter seems to be going through something very similar as your neice. She also had difficulties with eating and would scream for hours after eating. She also, hated sleeping on her back. (A reason we now know why) We have also had her tested for CF, allergies, and bacteria for causes of her poor weight gain and ulcers.

I actually was talking to another mother here that is going through something similar when it comes to the FTT and ulcers. Her son has gastric ulcer disease. (I'll be googling later tonight!!) She said his immune system actually causes flare ups, inflammation, and erosion of the lining. So hmmmm. . .

My husband and I will be talking pros and cons tonight over a "wonderful" hospital dinner. I would be more comfortable with the NG tube than the G tube.

Talk to you soon!!

[geminigirl1963]

I'm sorry to hear about your little one.  My niece also had FTT when she was little - she was a preemie and weighed just 4.8 pounds when born.  It's very difficult to watch them get so weak and sick and not be able to eat, so I feel for what you're going through.  My niece had severe reflux and a hiatal hernia and had an NG tube placed when she was about 3 months old and I completely agree with patient915 about trying that before going to the G tube.  While the children don't like having the NG tube inserted or changed, it is easier on them than surgery and as patient also mentioned, a less permanent thing.  Fortunately, my niece was able to completely get off her NG tube at just over one year of age - she's still small for her age and probably always will be - and is still a very picky eater, but she's now able to maintain her weight and is growing well.  She's now 12 years old.  

Have they tested her for Cystic Fibrosis?  CF can cause digestive issues and inability to retrieve nutrients from food.

Are they giving her any medications for her reflux symptoms?  If not, I would also definitely suggest asking her GI doc about giving those a try - they really made a difference with my niece - with her, some of the problem the GI doc felt was that since her reflux was so severe, every time she ate as a baby, she would have pain and therefore, started associating feeding time with pain, so was reluctant to eat.  A couple of other suggestions are to make sure that she does not lay down for at least an hour after she eats and to raise the head of her bed about 4-6 inches.  Both of those can help to alleviate the reflux symptoms and may make it more comfortable for her.

I do agree that the docs need to keep looking into the cause of her not eating and not absorbing what she does eat, but they also need to keep her as strong as possible and as healthy as possible while they do so - therefore, the need for some sort of feeding assistance.

I wish you the best of luck and please keep us posted on how she's doing!

[Heathmcmi]

Thank You for your response. She's fallen back off the growth charts in the past few weeks and is well below these third percentile. Her FTT is something we've been fighting for about seven-eight months now. Things were looking pretty good about two months ago when she started developing a curve and then after we were in the GI last week she dove off again. I was considering the NG tube as well. The whole thought of the G-tube is frightening and worrisome. Thank you again!!

[patient915]

Welcome to the gastroenterology community!  I can't really advise you to what to do because I don't how how little she is eating or how sever her FTT is.  The reason the GI doctor wants to give her a G tube is the make sure she stays healthy and doesn't get any sicker.  They do not just want to "make her fat."  However if you decide to give her a feeding tube you should first start with a NG tube which is less permanent then a G tube and doesn't require surgery.