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
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
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Shannon, my name is AmyD (Jan mentioned my sharepost in her last reply). I am a reflux mom also. Reading your story brought tears to my eyes, because I can share you pain. There is nothing worse in this world then seeing your hungry child not being able to eat. My son has been sleep feeding for 2 months now. You are not alone.
Our Pedi had also recommended that we stop sleep feeding my son, however we choose to continue because that was the ONLY way he would grow. In addition, I have a friend here in Houston who's daugther went through the same feeding struggle - her baby was sleep fed for over a year and one fine day started feeding while awake from sippy cup when she was around 13-14 months of age. This gave me hope and my husband and I decided to continue with sleep feeding instead of opt for Feeding Tube. In the back of my mind I still worry what if he stopped sleep feeding also - but for that we are giving him medication (prevacid) So I am hoping against hope that he will out grow the aversion once he realises he is not in pain anymore. We also spoke to some other doctors and a speech therapist who suggested we should continue to seelp feed while trying treat the reflux problem.
Only you will be the best judge of what's best for your child. I will also urge you to join the other post where you will find many other parent(s) going through the same struggle. Anytime you want to bounce of ideas or just need support I will be here.
Good Luck and I'll be waiting to hear back from you.
AmyD
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chloe'smom
Sunday, October 25, 2009 at 02:57 PM
Jan Gambino
Sunday, October 25, 2009 at 08:11 PM
Hello! You might want to try emailing AmyD directly for a quick reply. Click on her name and her profile will come up. Then there should be a way to leave her a message. Email me if you need further assistance and I will connect you. She has so much experience and knowing someone locally is wonderful!
Jan
Hey my Name is Angela. When I read your story, you described to a T what I went through with my daughter. My daughter is 2 1/2 now. But since birth she was dignose with asperation and acid reflux, she was sent home to thinken her formula with cereal and 1/2 sol. tabe of prevacid. 2 months later they were adding zantac along with the preacid, and a medicine that helped digest her formula faster. When she turned 6 months she quit eating. We had to her ped. and a local hospital every week trying to find out what was wrong. Finally I had to yell at them that she is losing weight, and will not eat. I actually had to show them how much of a fight is was to try to get the bottle in her mouth. we had to squeez the nipple to get formmula in her mouth. Her ped. finally told us to take her to a children's hospital in Pittsburgh, Pa, the next day we did and they ran all kinds of tests. We were there two weeks, they had done a scope and showed that she had sever acid refux so bad that if we would have let it go much longer it could have started to become cancer. So, the docs to us the safest way to go was a nissen-fondoplication (which is a belly wrop to stop acid from splashing up into her esph.) and put a feeding tube into her stomach. I can tell you the belly wrap has really worked wonders. We stoped all the medicine a week after she had it done. I don't know if you want to talk to your doctor about it or not, but there is an option for you.
I know how hard it was trying to be a good mom and not being able to control the pain. I felt like I was a bad mom for letting her go like that for so long. But on the up side, she is alot better. She still has the feeding tube, not because of the acid reflux, she had a trach placed because of sleep apena, which causes her to asperate. I'm just glad that I'm not the only one that went through this, because back then, I really felt like I was alone, because the doctors just looked at me like I was lying. I really do wish you the best of luck on everything.
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I have a 28week preemie who was born July 25, 08. We have been dealing with the same issues. We've been on prevacid ad zantac for a while and my son was gaining and doing well. He looks so healthy, no one can believe he's a preemie. BUT, i have had to fight for every drop of milk. He's always squirmed and fought the bottle, but this past week he learned to relax his mouth and not do anything. We've gone from 22oz of neosure thickened with rice to 10 -14oz a day. We had a PH probe in the hospital that showed mild reflux, but if he doesn't start eating by monday we go for another. My son may be in the hospital for x-mas, which stinks, but whatever it takes. Hang in there. I totally feel your pain. We are on carafate as well and feel like his symptoms have gotten worse since we upped the dose. We are thinking about stopping the carafate and see what happens. I think the sadest part is that I've never seen my son happier and more playful since he stopped eating. I guess he's not in pain.
Jenny
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Hi Salexa,
We are going through a similar situation and I have changed my baby's ped three times already. Somehow the doctors are totally clueless about silent GERD until it manifests in apnea or sever feeding aversion. We started therapy but it's going nowhere without involvement from a pediatic GI or ped.
It has been a while since you posted this. Has there been and progress? Is your daughter eating/drinking normally now? Please keep us posted.
Sonja
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Amy -
Are you in Houston? Can you recommend a good pedi and GI specialist, speech therapist/OT? I posted my ordeal yesterday and I feel so lost at what to do for my baby. She does not want to eat and has issues at sucking when she does eat. I can't sleep feed her b/c she just sleeps instead. I'm so scared that she is going to be dehydrated...