Hello I am new to this board my name is Amy and I have 4 kids. My last son Tyler was born at 33weeks he was doing fine until 36 hours old that is when he required surgery to repair a hole in the top of his tummy. He developed reflux at 6 weeks old, one week before he was due. He has been on 3 different kinds of meds he is now on prevacid tablets 3/4 in am and 1/2 at night, I finally feel his reflux is under controll. He is now 9 months old and weights 14lbs 10oz we have been loosing weight for the past month (well almost). Our ped sent us back to the GI Dr. We went last Wed and he is doing a Endoscopy and an X-ray. He said if all comes out fine with the tests he wants to do an NG tube for feedings throughtout the night (10-12 hours). He has developmental delays and sensory issues, we also have feeding issues. He tires out quickly at therapy and at home with feedings. He is going to PT once a week and also OT once a week. I asked the GI Dr about the feeding group and he told me no because it will take so long to get into them! My gut feeling is that the NG tube is a quick fix and is only going to make the feedings worse. Also I really don't see how this is going to help him solve this issues he has. He takes 15-20 oz per day from a bottle, when he takes the bottle he sucks for a good 1-2 oz and than just *PLAYS* with it for the rest (a max of 5oz a feeding). Also he is still on stage 1 nipple when we try the stage 2 nipple he gags on it and his reflux flares up again! What are your experiances with the NG tube Good or Bad? I am planning on calling our Ped on Monday and speaking with her about this and find out what her take on this is. Have any of you gotten 2nd opinons on the NG tube? Thanks for all your help!

Hugs
Amy mom to Tyler 33 weeks 5lbs now 9 months 14lbs 10oz

Amy, I would like to say hi and welcome to the board. I am so sorry to hear that your little one is having so many problems at this time.

I have a few questions for you; I was wondering if the docs have done a ph probe yet? If so was it on meds or with out meds? The reason I ask this is that the reflux may seem under control and actually may not be. I see that you are having a endoscopy done, this is good because will tell if there is break down, irritation, or eosinphills in the esophagus,stomach or small intestine. I was wondering if your child vomits when eats or do they seem full easily? The reason for this question is that alot of kids that reflux have delayed gastric emtpying which will affect how much they eat.

I was also wondering if the docs have tried any motility drugs? The drugs can help empty the stomach quicker lessening the reflux symptoms. All of these things can really be a reason why your child may not want to eat. When their is pain and the child doesnt want to eat it can cause sensory issues. I do agree with you about looking for a feeding program or a speech therapist to work with feeding issues.

The main thing now is to find out why your child refluxs and to have them gain some weight. The ng tube is a short term solution but can help to make sure your child is nutrionally sound. This could help with the fatigue and some of the other issues. Two of my son ended up with ng tubes due to surgery complications but then moved to gtubes.
Getting the ng tube will help for now but the docs really need to get to the route of the problems.

As for a second opion it may not be a bad idea because having a fresh perspective does help. If you have anymore questions please ask. I hope that I was able to answer your questions and if not please ask me again.

Melanie

Thanks fpr the info. No he has not had a PH probe done, I will ask the ped when I speak with her tomorrow. He hasn't vomited for quite some time, he was on Nutramigen powder first than I switched to Allimunten powder and he was still vomiting so out of last hope I tried the ready to feed and it worked! I just switched him back to powder and it seems to be going well. He will spit up an oz or so here and there but it is not an everyday thing either. Other than the reflux med's (prevacid) he has not been on anything else (Zantac and prilosac I think were tried also). What I am taking as being done or full I think is just being tired from eating. He gets up about 7 am and has breakfast between 7:30 am and 8 am when he is done with his breakfast he looks like he is ready for another nap, but if I leace him for a few minutes he will look more perky (SP?). I also forgot to say that he has been on a 24 cal diet for 1 1/2 months now. Thanks again I will let you know if I have any more ?'s after I speak with the Ped tomorrow.

Hugs~
Amy mom to Tyler 33 weeks 5lbs now 9 months and 14lbs 10oz

I forgot to ask is it better to do the PH probe with or without the meds?

To answer that question it is up to the doc. I know our doc did the first ph probes off meds to see if they were actually refluxing and then once on meds did the probe with the meds.

Doing the probe on meds shows if the meds are working at controlling the reflux and acid being produced. My kids never have had success having their reflux controlled with meds until they had their fundos done.

Melanie

Thanks That helps and I can see why they would do it both ways.

Amy

Hi Amy -- My son never at willingly or quite enough, and we used an NG tube occassionally in his early months, but never for more than a couple of days at a time, and then he'd start eating again. Later, when his problems were more behaviorial (though definitely based in medical issues) the NG tube seemed to do more harm than good. He'd start to gag and it'd wiggle in his throat, and he'd throw up buckets. It constantly needed to be retaped since it made his nose run, so we only added to his oral sensory issues. Plus, we just left it in way too long. Of course, we really had no other choice. He needed to get liquid and nutrition somehow.

Seems like there's always a long wait to get into feeding programs. Perhaps push your GI to get you on the wait list and you can always decide not to do it, but if the NG does cause complications, at least you're on the list.