Feeding aversion…don’t know what to do

[Anonymous]

We are having problems feeding our 4-month old daughter. During her first month, she was a big eater and did very well. However, she developed reflux (and is now on prevacid which seems to be helping with the reflux) and now has weight-gain and feeding issues. We have to give her a nap 45min before each feed (to get her sleepy) and feed her swaddled in a dark room with white noise in the background. She has always been bottle fed breastmilk. She was born at 6lbs and we worry that some of her feeding issues may be due us having tried to push her to eat more than she wanted. We have also been to a feeding clinic but so far there has been little success. We tried neocate/rice cereal but she ate very little and became constipated. We are now supplementing her milk with neocate with some success but her volume has gone down to the amounts she was eating in the first month.

 

Any other suggestions? How long does a feeding aversion usually last?

 

 

Thanks in advance for your advice

 

Nat

 

[Anonymous]

Hi Nat. Welcome to the site. Sorry to hear what you’re going through with your daughter. Sounds like my refluxer. In our case, she was difficult to feed from about a week old, cried non-stop, didn’t sleep, needed to be held all the time. BUT never cried to eat or be fed. When i would offer her breast or bottle, she would take one suck or none, start to cry, pull away, arch, scream, etc. Finally at 8 weeks she stopped eating. I couldn’t feed her. She was put on prilosec suspension which did nothing, and eventually prevacid which did nothing. We ended up having to sleep feed her, and even that was difficult.

Finally I found this site and found that her meds weren’t right- the compound was terrible and the dose was way too low. She was still in pain. I’ll fastforward to the end- at 8 months we got her on a good dose of prevacid, about 30mg, started feeding therapy, continued until around 15-16 months, when she was discharged. She remained a fussy eater, but at about 20 months started to like her bottle. We could tell that she was starting to feel better. And that’s when her eating slowly improved. She is now a picky but good eater with what she likes.

So, I have some questions for you:

1) What type of prevacid is it, what’s the dose, and how do you give it. IF either the dose isn’t high enough, or you’re not giving it or preparing it correctly, then it won’t work well. My experience with feeding aversions makes me believe that refluxers with feeding problems need higher doses of the meds. They need to feel comfortable so that they can forget that feeding hurts. Check out http://www.marci-kids.com for more info about dosing and meds.

2) You say that you’re feeding breast milk with neocate- is it possible that she has food intolerances? Can you try elimination diet?

3) The sleep feeding is difficult, but it also becomes hard to break. We couldn’t break the cycle. It was very hard. I personally don’t think that feeding aversions go away on their own. You first need to get the meds under control and make sure that she’s not in any pain. Then the next step is feeding therapy. If your feeding clinic can’t help, there are lots of approaches so look for others, or talk to your therapist.

4) consider testing, such as an endoscopy to make sure that there’s not something physically wrong or to get biopsies to examine the tissue. Get a referral to a pediatric gastroenterologist if you don’t have one already. If you don’t have a good one, maybe someone on this site can help.

5) Don’t blame yourself. This didn’t happen because you pushed her. Normally babies like to eat. You don’t have to push. They cry to eat, you show them the food source, and they grab it, and then they feel better. With a feeding aversion, they’ve learned that it hurts, so they don’t want to eat, so you end up pushing a bit harder to get them to eat, but it’s not your fault. We never pushed Hailey and she still had a wicked feeding aversion.

About turning it around, the sooner you treat the pain the better chance of turning things around. Some people on this site were able to do that- the meds or meds and diet combination helped. Some had to try spoon feeding formula, or feeding therapy, but they were able to get by. Others like myself, had a longer go of it, and it lasted for a longer time. Others still needed feeding tubes to help until their babies were feeling better and able to eat and that probably lasted the longest.

For us, the feeding aversion really lasted until around 20 months, getting progressively better from 16 months on. It was a slow road, but I also didn’t get her pain well controlled early enough.

I know how stressful it is. The struggle with weight gain and the worry about how much they’re eating or how much they’re gaining is very hard. Surround yourself with people who understand, and keep searching for new opinions or new clinicians to help. At about 7 months, I had reached rock bottom with the struggle of sleep feeding and being sent home from countless doctors with a low dose of prilosec compound. Then Laura (hellbennt) from this site sent me a simple reply to one of my posts. For whatever reason it empowered me to take charge of finding the right people to help my daughter, and to move on from those who thought things were fine, or that our situation was nothing.

I remember when Hailey was a baby and I heard that there were people who were dealing with this for years, and I thought that I would crumble and not be able to take it if we had to deal with it. But I have to tell you, that the people on this site are great, and that we made it through, and that we’ve come out on the other side where my refluxer is now my good eater, and my older daughter is the one who eats two bites and only wants junk food. So hang in there. Good luck.

[Anonymous]

Hi Lori,

Thanks for the fast response

here are some responses to your questions

1) per the pedtriatic GI she is on the max dose of prevacid for her weight approx 12 lbs. Her current dose of prevacid is 9mg per day which per marci is low. I will have to ask the MD.

2) I am currently on the elimination diet and the blood and mucus from her stool has disapeared

3) What does feeding theraphy involve? How does the therapy help with a feeding aversion. Since when we went to the feeding clinic they just sent us home with instructions on a feeding schedule.

4) The only testing we have done so far is a barium test of the upper GI, which came back normal

I live in minneapolis and would appreciate any recommendations of who to see in this area that has dealt with a feeding version.

Thanks again,

Nat

[Anonymous]

We were on about 10mg at 10 weeks, and that was low. I really think that it’s probably not enough to stop the pain. What type of prevacid and how do you give it?

We started feeding therapy when she was older, so it was more about accepting solids. When they’re younger, I’m not too sure what they do. You may want to have someone look to make sure that her mechanism of feeding is right- ie. suck/swallow/breathe, no aspiration etc.

If you check out Laura’s intro stickied under the introduce yourself forum, you’ll probably find lots of useful info, in there is a list of doctor recommendations.

[Anonymous]

Hi Lori,

Her prevacid is in liquid form and we give her the med via a syringe.

Thanks,

Nat

[Anonymous]

I also cannot find Laurie’s post. Please help me find it

Nat

[Anonymous]

Compounds are really difficult. Most aren’t made correctly. First off, if it has flavouring it’s not made correctly and if you give less than 3.5ml per dose, it likely isn’t made correctly. You can read more about it in Laura’s intro. https://www.infantreflux.org/forum/forum_posts.asp?TID=853

Also , I’ll bump a few threads about compounding meds.

[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…

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hi
& welcome! you’ve found a great place!

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

http://www.marci-kids.com is at the FOREFRONT
of research of PPI use and dosing in infants/todders. You might 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…

I
have a LOT MORE TO SAY! and most of it is here: Groupie Intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853

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

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!

hellbennt2009-11-15 20:50:52

[hellbennt]

here’s some more:

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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

hellbennt2009-11-15 20:57:09

[Author]

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