3 M/o Baby Dx'd W/gerd: On 4 Meds, Refusing Bottle, Dr Says Ng-tube Next...help?!

Question

Asked by Salexa

3 M/o Baby Dx'd W/gerd: On 4 Meds, Refusing Bottle, Dr Says Ng-tube Next...help?!

My 3 month old daughter was diagnosed with reflux after we voiced concern at her 2 month appt about her battling the bottle with us. She doesn't spit-up but 1st turned away from me when BF-ing and after having to stop that (losing milk) she began pushing the bottle away with her tongue. The pedi put her on Prevacid 1/2 tab daily. I thought maybe she didn't like the bottle nipples and bought 4 different types of bottle. Then we tried different formulas. Nestle Good Start worked w/our first daughter and Reagan (the 3 mo) was on this one. At the dr's suggestion we tried soy...this impacted her. She could not have a BM. She tried and you could see it but it could not come out. We switched back and then tried a few more with equally alarming results. The dr suggested Alimentum. We thought we'd wait it out. A few days later my daughter was discovered by my 3 y/o choking on vomit that came out her nose and mouth. She was no longer breathing and we called paramedics while my husb did the back blows and suctioned with the bulb syringe. She began breathing but was still a bluish white color. The ambulance took her to the hospital where she was diagnosed with GERD and this was labeled a reflux episode. We were terrified. Would this happen again? If so and it happened at night or in the car, would someone notice? She had made no noise while choking.

The next day the pedi put her on bethanacol three times daily and knocked the Prev up to 1/2 tab 2xdaily. Her eating had begun to decline. An oz here, 1/2 an oz there...3 oz if we lucked out. I feed her often when she is asleep. We keep daily diaries of how much she eats. (11 to 15 & 1/2 maybe 16 oz normally).

After a referral to a pedi GI/Nutritionist, and an upper GI, Barrium Swallow Study, it was determined that her suck and swallow was healthy and her feeding tract was normal. We were told it wouldn't show her refluxing unless it happened then and there. When she choked it was 2 hours after she'd eaten. We momentarily have an apnea monitor to ease us into the next two months to raise our confidence that she won't choke again.

We saw the specialist this past Wed. & he says that she has non-vomitus reflux and that she is forming an aversion to eating b/c of the pain. Basically she is developing a pediatric eating disorder and we have to do something about it before it affects her growth/development. He recommended Carafate to coat her esoph. and then told us to give that a few days to see if it works and if not we would need to have an NG tube placed.

This shocked us completely. This is a nightmare. I can't go back to work due to the strain of trying to medicate, feed, and tally the oz's for the day. I'm stressed to the max and cannot imagine having to feed my poor precious daughter through a tube in her nose. Has anyone else had to resort to this? We started the Carafate with what seemed like immediate success but that was short lived. After a 4 oz feeding a downward spiral has begun. It literally went 3 oz, 2 oz, 1, 1/2, and then her screaming at the sight of a bottle. We called the specialist today after coming to the realization that she is going to starve or dehydrate herself if something isn't done. I've cried all day dealing with the dr's until I can't see straight. I'm so worried that her going on the tube will only make things worse. Has anyone had success with this or delt with this? Please respond. The dr added Zantac to her medication list and I cannot believe that my 3 m/o daughter is on 4 prescription drugs. We are losing our minds. She is otherwise a healthy, normal, laughing baby.

Oh, and she has had rice added to her Alimentum as well. We were also told to stop feeding her when she was napping that it only makes it worse in the long run...

Thank you,

Shannon

Answer

Oh Shannon, I am sending big hugs to you...Be sure to check out the SharePost started by Amy D. There are quite a number of Reflux Moms there who are dealing with similar issues, especially related to feeding issues/refusal.

I wonder why your sweet girl is still in pain despite all of the meds and special formula. Has the doctor checked for Milk Soy Protein Intolerance or food allergies? Esophagitis? Eosinophilic Esophagitis?

If food allergies or intolerances are suspected/diagnosed, some babies are put on a completely hypoallergenic diet. One brand I know of is Neocate.

I have heard of babies needing tube feedings for short term. If all other medical conditions have been ruled out, sometimes a feeding tube can give the digestive tract a rest. My daughter had a feeding tube and a pump for a while. At first, it was my worst enemy and I felt like a complete failure in the feeding department. Then the pump and tube became my best friend. She could eat as much (or as little) as she wanted, the pump allowed me to make up calories and nutrients without any work on her part...as well as by pass the feeding aversion.

I would say that a ng tube should be a last resort when all else has been tried.

It sounds like your daughter has the type of reflux where she vomits and expells her stomach contents some of the time. Other times, she is backwashing-the stomach contents go up and down the food pipe. This can cause terrible irritation to her esophagus or food pipe. The lining of the esophagus is not meant to withstand the acid like the stomach. Further, the food and acid can try to enter the lungs, causing choking and the breathing issues. I am glad the doctor is trying to address these issues. It is very upsetting to have so many challenges with such a little baby plus a big sister too.

I know you are a wonderful mommy. Unfortunately you will need to work harder than ever for a while longer. The diagnosis phase of reflux can have its ups and downs. Be sure to ask for and accept any and all offers of assistance right now. It is too big of a job for one mommy to do.

Also, keep in touch with the other parents on this site for venting and support. It will make a world of difference.

Please feel free to write back as often as you need to. We are all here for you

Jan

The Reflux Mom

Answered by Jan Gambino