Infantreflux.org | New to Site: Need Help Suggestions

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April 30, 2008 at 10:11 am #50978

Anonymous
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Hello All! SO happy that I found this site!!! I feel unsupported by my husband and feeel as though I am going through this all alone.

I have a newly 4-month-old that has GERD and I feel as though I am at my wit’s end. We are at the doctor almost every week for one thing or another relating to the GERD, and we have had two hospital stays.

The reflux started when she was about two weeks old, and we thought that she was colic. After a while it was discovered that she had reflux which we were treating with zantac and things were going fine (barring some spitting up and coughing-but she was eating) until she had her two month shots. After that she started not eating and really stressing eating (arching her back, and crying). She ended up severly dehydrated and had to stay in the hospital for a week where they concentrated her formula because she was mal-nurished. She is now on prilosec and zantac (both high doses), and she had started to do well. She was eating 4 oz every 4 hours until a few days after we got home, then she started to decline again and not want to eat. Since then she has had an upper GI (which came back normal) and an increase in her meds. (Prilosec 2.5 ML 2x’s a day, and Zantac 1 ML 4 x’s a day).

Just recently she had a PH study done and now were are on a decline…she is not wanting to eat again. She will eat about 2-3 oz during the day feedings but she will eat VERY well at night…???? The nutritionist at the hospital said that she believes that she has made a negative association with eating.

Please help…I’m at my wit’s end and even my husband doesn’t seem to understand my frustration, he is not home with her all of the time and thinks that she is just fine, I feel like I have no support in this, and I am fighting an uphill battle. At the end of the day I feel emotionally and physically beat up by my 4-month-old.

I’d love to hear from all of you! Thanks!

April 30, 2008 at 11:23 am #50979

Anonymous
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Welcome! sorry you had to find us, but so glad you did! My husband didn’t get it with our first until he stayed home over the summer (he is a teacher) with our second, and then the magic bulb went off! It can be very hard and frustrating if you feel you are doing this all alone, so know that this is a wonderful site with support and advice from a lot of amazing mothers who either are or have been where you are at, so you are not alone here.

There is a lot of information on Laura’s intro (someone or she will post it here for you) that talks about the suspension meds (worked for us but that is rare) and also the spacing of the prilosec and the Zantac. My first I fed in his sleep for a few months until I got him on the right combination of formula/meds. We ended up on Neocate which was much easier for him to digest and we did thicken with soy free rice, but others have found that to be counterproductive, so it is a bit of trial and error to see what will work for your little one.

You are doing an amazing job!! Hopefully finding us here will be as much support to you as it was for me when I truely needed it. I have found myself sticking around along with others as I don’t want others to suffer as I did with Dylan. I was already a veteren when Carter came along, so it was much easier with him.

Hang in there! and Vent when you need to!

Ann Marie

monty1232008-04-30 11:25:43

April 30, 2008 at 12:51 pm #50980

Anonymous
Inactive

Hey there, and welcome. I’m so sorry to hear that you and your little girl are having such a hard time. I’ve had two refluxers, and getting them through those early months was the hardest thing I have ever done. Hang in there though because it does get better!

I think Ann Marie’s advice about checking out the Prilosec suspension is a good one. They often don’t work well. Also, what is the mg/mls of the dose? Check out http://www.marci-kids.com Infants are actually underdosed often because docs don’t realize that they metabolize the meds so quickly. Marci kids will have a chart where you can check to make sure that the dose is high enough for her.

My daugher had silent reflux and we didn’t even know it until she hit the 4 month mark and stopped wanting to eat, just like your dd. The doc. thought it was my milk supply, but she stopped wanting to eat because she was in pain. Thus, my guess is that your dd needs a higher dose of meds. Many of our little ones only want to eat in their sleep because they typically associate eating with pain.

I hope you find some answers and some help soon.

April 30, 2008 at 1:50 pm #50983

Anonymous
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Hi and Welcome. I agree with what both Ann Marie and Naomi have said. I will also say that I totally understand about not being supported by your DH. I am still fighting that battle with mine now at times b/c my son has become so dependent on me that he won’t let DH take care of him. You may need to up his meds and like the others have said the suspensions don’t always work b/c they aren’t made properly. We have had great success with the prevacid solutabs (but you do have to time the meds with an empty stomach and meals). You have found a wonderful site where you will find tons of support.

April 30, 2008 at 3:28 pm #50987

Anonymous
Inactive

Hi and welcome!

so glad you found us. The others have given good advice. If I were you I’d check to see if your compounded prevacid is being made correctly. The marci-kids site has specific instructions on how it should be made. Often times, it is not though and babies only get relief for a short while before the 30 day supply goes unstable. We had success with Prevacid Solutabs and also, at one point we used Nexium powder packets. Both of them must be given on an empty stomach and followed up with a meal 30-60 mins later. But we found that they worked very well. We also had to use Neocate formula, as Landen was way too intolerant to milk protein in Alimentum. The intolerance itself was probably 75% of the problem and once we removed milk protein, he got much much better.

Vaccines can definitely flare up reflux! For the vaccines that we do get, I get them very spread out so there isn’t more than 1 at a time. For some reason they are really hard on refluxers. We are very behind in our vaccine schedule.

Good luck and I hope you can get your little one comfy very soon!!

April 30, 2008 at 4:46 pm #50989

Anonymous
Inactive

This may seem silly but what is “MSPI” that everyone talks about???

Thanks!

April 30, 2008 at 5:20 pm #50991

Anonymous
Inactive

MSPI= milk/soy protein intolerance & MFPI= multiple food protein intolerance

Not silly to ask questions. A lot of us use abbreviations and forget that the newer ones may not know what we mean by them!!

April 30, 2008 at 5:23 pm #50992

hellbennt
Keymaster

hi & welcome!

I’m the aforementioned Laura, & I have a LOT to say

& (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

so glad you found us!

~laura

May 7, 2008 at 5:34 pm #51194

Anonymous
Inactive

So it happened. We went to an appointment with the surgeon last week and a fundoplication (sp?) was suggested. However, my husband and I want to do anything we can to avoid surgery on the poor little one. We were admitted into the hospital and she was given a feeding tube (NG) to make sure she receives the calories she needs, we try the bottle first but if she rejects it, we tube feed. Now we are home and I am not as stressed because at least I know she is getting the right amount of calories that she needs to grow and move up in the retched percentiles !!!

May 7, 2008 at 8:52 pm #51204

Anonymous
Inactive

I would pm Christine (kevieb) about the fundo. Her youngest had one and I am sure that she can give you advice about the procedure. That usually isn’t suggested from what I have learned unless it is really needed. Cooper’s mom2008-05-07 20:57:55

May 8, 2008 at 3:24 pm #51239

Anonymous
Inactive

my sylvia is the one that has had a fundo. she had it done just before she turned 10 months old. they usually don’t recommend it until they have exhausted everything else—-but there are certain complications of reflux that definitely point to having a fundo done.

sylvia’s reflux averaged out to almost 25% of the time—-she was refluxing around 19% when she was lying down and around 29% when she was upright—-so much for holding her upright to help with the reflux!!!! sylvia also had prolonged episodes of reflux, which are more significant than the number of reflux episodes. i think that is because that is when there is more time for the reflux to do damage. her longest episode of reflux lasted 44 min—–when she was asleep. her esophagus was getting ulcerated, she was anemic, and she was failure to thrive. when they went in to do the surgery, they discovered that she had a good sized hiatal hernia. she has had no complications from her fundo, but she did continue to be failure to thrive until she was 2 years old and she twice had a g-tube hanging over her head—–but we managed to get some weight on her both times and avoid the tube. she had a bout with esophageal thrush and wouldn’t eat well. we got that taken care of and just as she started to do well, she got sick and slid downhill again. she developed obstructive sleep apnea which we learned can cause failure to thrive. she had her tonsils and adnoids out just after she turned 2, and she has hardly been sick or been to the doctor ever since. she is 4 1/2 years old, now.

a few questions: what is your baby’s weight and what percentile is she in? what were the results of the ph probe? did they also do a scope to see if there is any damage to the esophagus. also, it seems like alot of kids do better with prevacid than with prilosec—-you might ask about changing meds—–and definitely make sure that it gets compounded right!! ask them to make you only a two week supply at a time and don’t have it flavored. you can also ask for carafate to help sooth her throat and esophagus. even though you are not supposed to give it to them right before they eat, i have given it to sylvia in the middle of a feed and it helped her to calm down—-someone else on here said they did the same thing, once and it also helped their little one settle down.

sylvia had an excellent pediatric surgeon. her surgery was done laparoscopically and she has 5 tiny little scars on her belly that you can hardly see. she had never had any complications. she can burp, but she can not throw up. the first time she got sick and started wretching, it scared me to death—-i thought she was choking on something. for quite awhile we kept phenergen suppositories to give her for nausea in case she got sick.

sometimes she tries to tell me that something is going to make her throw up—-and i just say,”you can’t throw up.” i don’t know why she tells me this, because i don’t think she has ever seen anyone throw up and i’m sure she doesn’t remember when she used to throw up all the time—-probably something she learned from TV or the older kids.

i have pretty bad reflux and at one time i was considering having a fundo done myself. i just don’t want to keep taking meds for it the rest of my life. i also take so many other meds, that i wonder if i absorb them ok when i am taking a PPI. i had a scope a couple of years ago because food was getting stuck in my throat and it showed that the reflux was severe. i don’t have any insurance right now, so surgery and even taking a PPI are out of the question for me right now. i take some OTC zantac and some gaviscon sometimes.
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