Posted By Posting
Mar 23, 2010
natmac
HELP! refuses to eat!
hello, this is my first posting on this website, but I have read many of the other posting and they have been helpful and reassuring. My daughter is 4 months old and was diagnosed with reflux at 2 weeks of age. She was placed on Zantac at that point. At 5 weeks old she woke up one day and decided that she was going to refuse to eat. Her meds were switched to Prilosec and she was referred to a GI doctor. They ordered several tests (barium enema, upper GI, etc) and all results were normal. All the doctors just keep saying it is severe reflux. She has now been on prevacid for about 1 1/2 months and her symptoms of reflux have seemed to improve but still refuses to eat most of the time. She is EBF and refuses to take a bottle so this has been very stressful on me. She was referred to a feeding team and they were not much help with the feeding aversion. She is now still on the Prevacid and they added in Zantac again with that. I have been on a restrictive, dairy free diet since she was 2 weeks old. Her weight gain has still been ok, but has definitely slowed down completely. I have no idea how much she gets everyday bc she is breastfed but it is very common for her to go 6 or 7 hours refusing to eat, and she doensn't seem to care if she eats or not. I mostly have to dream feed her (when she is drowsy or asleep) and I am very stressed. I have already extended my leave from work but would appreciate any advice or support. Have others had this fussiness and refusal to eat for most of the time for this long of time?? Any advice with the feeding aversion?
Mar 23, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) It is so stressful to be EBF'ing a baby who is either hurting and/or refusing feedings. There are others here more versed in aversions than I, but here are two things that jump out at me: 1) have you discussed trying either a different med, or a combination of meds with her pedi? Sometimes it takes awhile to get just the right med schedule for a child. 2) The one way you can determine how much milk your little one is getting is to weigh her before and after each nursing session with a hospital quality scale. If there is a lactation consultant in your area, you may be able to borrow or rent one.

For what it's worth, there are some techniques used in Chinese Medicine (massage techniques and herbal compounds) that can be VERY successful at stimulating the urge to eat and overcoming aversions. I don't know if you live in an area where that might be available, but IMHO, it's worth a try.

Mar 23, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I have soo much to say but it's almost midnight and I'm getting ready to get into bed, sorry. I'll be back tomorrow I promise.

I will tell you that tomorrow morning call Early Intervention and get an eval scheduled. You will be amazed at what a GOOD ST or OT who specializes in feeding issues can do for kids.

What feeding team did you see?? Which location??

Also, what exactly does she do when you try to feed her?? Does she kick, bat at you while you BF? Does she scream when you try to BF her??

These will help me tomorrow when I log back in before lunch.

Mar 24, 2010
natmac
thanks for the support. When I try to feed her she just screams, pulls away, etc. With the bottle which we have basically NO success with she does the same if not worse. I have to continually try and wait until she sleeps to feed her. My milk is definitely diminishing and no matter how much I am pumping I can't seem to get it to build. So I am not sure what will happen soon.... if I can't BF her anymore then she will have to take a bottle and formula.. and I don't know how long she will hold out with that before it becomes a major issue. I went to the feeding team at Children's hospital in Philadelphia (which you would think would be very helpful). The appt consisted of a food doctor, nutritionist, OT, AND speech pathologist. They were really of no real help and gave us a few tips (most of which we have done on our own already) and said they will see us back in 4 weeks...ahhhh! In the meantime I just watch wet diapers, etc..So she already has had the major evaluation and all and they gave us their feedback. They did tell me to start her on 1 oz of milk and 1 teaspoon of oatmeal cereal (pulvarized to make it finer) and see how that goes. She is receptive to the idea and looks interested and excited for a minute (probably bc she is so used to taking so much meds) but is not very good at it yet, and then gets fussy with that too. Any suggestions? hope this info helps
Mar 24, 2010
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Oh, my. Dream feeding and feeding strikes are the theme for this month. We have two other kids who have almost stopped dream feeding this week. I contacted two pediatric gastros and asked them to weigh in on the discussion. I hope they will. Advice from other moms is priceless but I also like to hear opinions of doctor when kids are getting into the trouble zone.

I just read a new book by Irene Chatoor MD who is a gastro at Children's in DC. She has done a lot of articles and studies about feeding issues. The message that keeps appearing is that nothing will be very successful with these kids until they are out of pain. You can buy the book through Zero to Three web site.

Prevacid with Zantac at night works great for most babies. But your baby might prefer something else. My child liked Tagamet better than Pepcid and Zantac didn't work at all for her. This is the complete opposite of the statistics at the time. Is the dose high enough? Is this the best brand? You do know there is milk in some of the meds, right? Are you giving it at the best time of day? Are you giving the meds at the same time or separate from each other? A chat with your pharmacist might be a good starting point.

{{hugs}} I know how hard this can be. My kid stopped eating at 5 months. I've never heard of a baby going on a feeding strike at five weeks. You must have a very smart baby! They say that babies don't understand cause and effect until 6 months. I think a lot of kids with reflux prove that they do.

Mar 24, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
The feeding center at CHOP is supposed to be really good. If you can swing it though, I'd try to get seen a KKI In Baltimore, Maryland. They are THE best. I have heard nothing but good things about them. Also, there is a feeding clinic in Hershey Penn, close by, they are supposed to be fantastic as well.

By 9 weeks old Jedd was not taking anything by mouth and needed a feeding tube. He had a DX of a heart defect that contributed to that. By age 16 weeks he was cognizant enough to swing bat and kick the bottle out of our hands to get it away from him all while screaming and flailing his head arms and legs around.

I will tell you that every single clinic you go to will tell you this as their #1 suggestion, a child in pain from reflux/GERD will not eat successfully. You have to treat the medical issue first BEFORE trying to eat orally. In the mean time, many of the clinics will suggest a feeding tube to get the child the nutrition they need to survive. Not all children will need this, only those who are really FTT and are not able to keep themselves hydrate. That's probably why they want you to watch for wet diapers.

So, my advice right now, would be to work closer with the GI to get that pain under control, until then, it will be very difficult to get a child to eat properly.

I know, it sounds like awful advice, but there is no set way to get a child to eat when they are in pain. We tried and only made the aversion worse with Jedd by trying to get him to drink with a tube in his nose and when his GERD was out of control. In hind sight, we should have stopped trying to do oral feeds sooner than we did. I actually ended up taking an entire summer off of doing therapies on my own and just tubed everything. Made the stress much less.

Mar 29, 2010
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
The great news is that the babies often start eating much better the day their pain is under control. The other mom who was tearing her hair out this week has seen this first hand. Her baby was down to less than 10 ounces per day with a dropper and is now up to 24 ounces. with no fuss The medicine dose was raised and a week later the pain subsided.
May 04, 2010
izzysmum
Having read your post and being new to this site I find it reassuring that I am not the only one going through this aversion to eating. I'm just wondering if you have made an progress since your post in March? My 3.5 month is bottle fed but is the exact same way. If I try to feed her when she's awake, she pushes the bottle out with her tongue and turns her head from side to side. I have to wait until she's in a deep sleep and hope that she doesn't wake up in the middle of the feed because if she does, that's it, she's done. Please let me know if your issues have resolved itself and if so how? I need some hope that it won't be like this forever or get any worse. :-( Hope all is going well for the mums and babes.
Check with your
doctor first!