Infantreflux.org | HELP!! Infant Reflux, HATES EATING

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January 2, 2010 at 9:35 am #65325

Anonymous
Inactive

Hi, I’m new to this site.. And although I’ve found some extremely helpful suggestions from fellow suffering mama’s, I just thought I’d make my OWN post to see if I can get some specific H.E.L.P!!!!

My daughter is 4 months old and has been suffering with reflux for about 3 months now. She was breastfed exclusively for the first month, and around 3 weeks I started noticing changes. She would arch her back and scream through the whole feeding, although acting ravenous and starving. We had our first trip to her pediatrician, only to be dismissed with the typical “it’s your diet” ordeal. After altering my diet for weeks, there was NO help. So I started supplementing with formula to ensure it was NOT my diet, as I already thought. However, after being switched formulas 4-5 times, she (nor I) found ANY relief from this. I knew it was not just gas. I did my own research and seen many other mom’s having the same troubles and they found out it was reflux. Her pediatrician started her on a very low does of Prevacid to start. It worked WONDERS for about a week, then it just failed to do anything for her. After this, she was put on Zantac (2x/day) and Reglan (4x/day). This was a miracle for about 3 weeks. Then, once again, it started failing us again. I called the doctor only to have her tell me she was growing out of it and needed a dosage increase (this happened twice) She is now taking Zantac (1ml 2x/day) and Reglan (0.7ml 4x/day w. meals) and it is showing absolutely NO change. After about 10-12 visits to her doctor (and she’s only 4 months old) Nothing is helping. She’s had an Upper GI done with nothing being shown except “SHE HAS REFLUX.” Well DUH.

I NEED HELP!!!! Her pediatrician does absolutely nothing and takes NONE of my suggestions to heart. I KNOW I am not just a worried first time mother, my daughter needs HELP! Feeding is supposed to be a relaxing, bonding time. Not complete hell for me and pain for my daughter.

She is scheduled for a Gastronitestinal Specialist at the end of the month.. but I want help NOW!!!

Please HELP 🙂 Any suggestions would be enormously appreciated!!!!

January 3, 2010 at 7:44 pm #65335

hellbennt
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my computer does not like me to copy from MS
Word to Mozilla Firefox, so please ignore the underlined words that are not
hyperlinks…

hi &
welcome!

you’ve
found a great place!

the key to
all of this is RESEARCH and, of course, support!

I have a LOT TO SAY! and most of
it is here:

Groupie Intro:

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

there
is even a link from Groupie Intro for finding a dr near you.

(Anyone
else reading this who has not posted their dr on that link: PLEASE do, as it
helps others! the good AND the bad…thanks!!)

Groupie Intro is
looong, but PLEASE read/skim/scroll
through it & refer back to it, as it TRULY will help you!

next, you’ll want to visit:

http://www.marci-kids.com, this site is run by the researchers who are at the FOREFRONT
of research of PPI use and dosing in infants/todders. You will want to
start there to see if PPI dose is ‘proper’

then,
hop back here to learn HOW to get that proper dose, if need be, and what FORM of PPI and HOW to administer…

Prevacid
101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

unfortunately,
the majority of drs & pharmacists don’t know…babies metabolisms’ are much
faster than adults, so the drugs work differently with them…

after
medication, you might then want to look at diet…

so glad you
found us!

~laura

ps: when you
get a moment, please go to the upper right-hand corner of this screen and click
on ‘settings’ and from there you can edit your signature and let us know how
old baby is, what formula or breastfeeding, MSPI or not, what meds and
what doses and form of meds and how you’re administering-thanks!

hellbennt2010-01-03 19:47:57

January 7, 2010 at 3:37 pm #65389

Anonymous
Inactive

Hi there!

I wish I could write to you with tons of help and wisdom. Unfortunately I am in the throws with you and am still not finding tons of answers myself. However, I can say that to some extent I understand your pain and heartache, and I am so sorry! No one but a mama truly understands how difficult it is to see a baby in need and not know how to help or make it better – this is especially difficult when we feel like we can’t provide fully their most basic need – food.

My little one too struggles with eating. He too has been through several cycles of things getting better only to get worse again. It has been a day to day challenge, and I understand how stressful it becomes. I still go to every feed trying not to be anxious about whether he will eat or not. And I know what it feels like to go to doctor after doctor, only to have no one be able to really help. Ugh! I think one of the main challenges with doctors is that they see the big picture – which can be a good thing. They believe that EVENTUALLY things will most likely be fine and that there is not much serious concern for their long-term well being. But as moms, we are in the moment, living out each day where we are not content to accept the fact that our children are in pain and that something is just not right. Even if it is just a short season and all will work out in time, that doesn’t help get through day after day!

Have you considered looking for a new doctor. We switched about a month into this and I am really thankful. Our doctor is still not my “ideal” doctor, but he listens to me and takes to heart what I say and has been very willing to try my suggestions. This is a huge help!

I will also say, though this doesn’t serve to help “fix” anything, a friends shared with me a quote regarding taking the burdens of one day at a time. I know I get so insanely overwhelmed when I look to tomorrow, or even to the next feed. I have to just take it one day, one feed at a time knowing there is enough grace just for what I am facing in the moment. I’m really not always that great at keeping my focus, but it sure does help when I do. Again, I feel your pain and I am so sorry things are so tough. I hope you are able to find help/answers soon!!

Kristy

January 7, 2010 at 6:12 pm #65394

Anonymous
Inactive

Thanks for that. It’s nice to receive a positive post, and an encouraging one at that! 🙂

I just recently had her first appointment with a doctor whom specializes in Pediatric Gastronenterolgy. He told me to continue with her dosage of 2.5ml/2x a day of Prevacid, since she had only been on that dose for 3 days. I am on day 5 and still no relief so far. So I’m crossing my fingers that it will kick in eventually. The doctor told me it can take up to a week to start working.

I’m also thinking that at this point, she’s developed a food aversion. She screams and arches her back everytime I get the bottle anywhere near her mouth. So even if the Prevacid has kicked in, I still can’t get her to take a bottle. It is the most frustrating thing in the world, not being able to feed your child. I hate that every feeding is a screaming match.

How did your child (Erik) do with the Zegerid?

January 7, 2010 at 6:17 pm #65395

hellbennt
Keymaster

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feeding aversion forum here:

https://www.infantreflux.org/forum/forum_topics.asp?FID=41

browse
through some old posts, go back pretty far, too, to learn from people who no
longer post here bcse their babies are all better…

if
you find a thread that suits your situation, you can post there and hope that
people who have posted in the past are subscribed to the forum and will get an
email notification that the thread has been updated…you can also send them a
PM (private message) w/ a link to a thread you’ve posted on and ask them to
please respond to it. To send a PM,
click on the underlined screen-name of the person & another window will pop
up. Then, under ‘communicate’ click on the PM button.

Lori
post re: sleep feeding/food aversion: https://www.infantreflux.org/forum/forum_posts.asp?TID=12756&PID=106424#106424

Another
Lori post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=13317

hellbennt2010-01-07 18:18:12

January 7, 2010 at 9:47 pm #65404

Anonymous
Inactive

Oh this sounds so familiar 🙁

Chloe used to scream when she saw the bottle (once in a while she sometimes still does).

First we made sure her prevacid dose was adequate and made sure she did have any sucking issues (i.e went to a feeding clinic). Then we worked very hard at trying to get her in a very relaxed state prior to feeding her (but not asleep), i.e. we put her in a swing for 10 minutes before we feed her, we also limit the feeds to 30 min and we eliminated one night feed at the time to allow her to be more hungry during the day. This routine seems to help Chloe with her feeding. But she is not a normal eater by any strech of the imagination. We have to get her relaxed before eating, the room needs to be dark and quiet. She does not eat in strange enviroments and her total volume has never gone above 30 ounces a day but it is an improvement from where we were 3 months ago (less then 20 ounces a day). I don’t think she will ever feed well from a bottle but we have hopes for solids.

January 17, 2010 at 1:12 pm #65544

Anonymous
Inactive

Thanks for your reply, Nat!
I’ve had to sleep feed Brynlee for the last couple weeks, and although it is very inconvienent (Especially if running errands is in the daily plans..) It is getting the ounces in her that she needs. She will eat 6oz every 3 or so hours as long as I get her to sleep (At least relaxed with her eyes closed lol) Before she’llt ake a bottle. If she isn’t quite to the state she needs to be, as soon as the bottle hits her lips she starts wailing.

So glad to hear that your little one is doing better. Solids have always been easier. The last few days I’ve introduced some 1st foods (i.e. bananas, applesauce, pears..) and she loves them, and doesn’t fuss at all about eating with a spoon.. But I’ve noticed some increased fussiness (especially at night!) So I’m going to stop those for awhile so I can get her adjusted.

January 17, 2010 at 2:41 pm #65548

Anonymous
Inactive

Hi there fellow moms of babes with feeding troubles! Feeding aversions are so hard to cope with, so I’m glad that you can come here for support. I was very lucky that there were other moms with non-eaters on at the same time as me, and I swear that saved my sanity. The first thing I’d say is not to listen to people who don’t understand. People will give well meaning advice like “she’ll eat when she’s hungry”, or “she feels your stress” etc. But know that this has nothing to do with you. Babies should cry when they want the breast or bottle and be comforted when they see it, not cry when they see it. Feeding aversions are not normal. I can’t emphasize enough getting your baby on a good dose of PPI given correctly. I found that feeding aversions need higher doses than the low dose that many docs give. We let things get out of hand, and by the time she was comfortable the feeding aversion was so ingrained that it took a long time to undo. I would say to get a ped GI or a good ped who will give a good dose and take it seriously. I’d also be cautious about introducting solids. we thought that they were starting off well, and then didn’t realize that it wasn’t, and then she wouldn’t take liquids or solids. So we started feeding therapy. Sleep feeding became the only way she could eat, and even that was hard, and definitely inconvenient.

My advice would be-

1. Get some good support for you to get a break

2. Get the meds straightened out so that the reflux pain can be controlled

3. Be careful introducing solids too early and keep a log of new foods

4. If things don’t improve with a good dose of PPI, try feeding therapy

Good luck. Hope things turn around for you soon.

January 17, 2010 at 6:23 pm #65552

Anonymous
Inactive

Oh I am having a really bad weekend. Chloe is slipping back into her old ways of eating less and less. Not quite sure what to do, I guess we will discuss this with the Ped GI on Tuesday. I keep telling myself this will get better and we just have to grind through this phase.

February 6, 2010 at 4:04 pm #65763

Anonymous
Inactive

It is so hard. As soon as you get used to things getting better, they take a turn for the worse. I’m just gritting my teeth and trying to get through this crap! I just hope everyone can get some relief!!!
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