#2310121 - 07/12/11 12:15 PM
Baby with oral aversion
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Beginner
Registered: 07/12/11
Posts: 12
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My baby is 8 months old. At about 6 weeks she slowly reduced her length of nursing, often pulling off and being fussy. By 11 weeks she stopped. I started expressing and bottled fed her expressed milk. However I struggled for hours to get the milk into her.
I visited my GP 5 times who believed my baby was just a fussy eater! On the first visit my GP had been away and the registrar prescribed omeprazole suspension. After my GP didn't refer we went to specialist privately who put baby onto granules we are now up to 15mg. Has been once daily but after a bad week going to give twice daily. We have also been on Neocate for well over a month. The first month I only gave Neocate and no solids.
My baby hates solids only enjoys fruits particularly pears. I dread feed times. My baby has put on average weight throughout (Thanks to my endless day of hour long feeds!) I get the impression even the specialist doesn't think there is a problem since my baby appears happy in the exam room. I even took video evidence to last consult.
Do things ever improve? I just want my baby to learn to eat and drink without pain. Has anyone had similar experience of the meds not working. What do you do?
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#2310765 - 08/12/11 03:34 PM
Re: Baby with oral aversion
[Re: Mum of 1]
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Enthusiast
Registered: 18/03/09
Posts: 320
Loc: Manawatu
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My twin DDs were both bottle averse with reflux and tube fed as a result between 3months and 9 months of age. In the end we followed Dolphin's advice and dream fed which was a lifesaver for us.
Yes it does get better. At about a year, my girls got a very bad case of the flu, and we couldn't get them to eat or drink anything except yoghurt. Until one night DD1 woke up thirsty, for some reason I tried a bottle and she drank. DD2 took a bit longer. They were very slow with solids and lump adverse until about 18months, so still eating puree. But now they are "normal" toddlers who are picky, but generally eat well - they just love sausages!
Everyone's story is different, and some solutions are quicker to find then others. But you do get through it. I hope you find your answer soon.
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#2310787 - 08/12/11 04:15 PM
Re: Baby with oral aversion
[Re: Armadillo]
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Beginner
Registered: 07/12/11
Posts: 12
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My baby is still on stage 1 foods and it is such a performance to feed. I still give the bottle first even though the Plunket guidelines say to give solids first at 8months of age and then milk. But if I do that baby is not hungry enough to drink. So I battle the milk first. Stop start. Stop start. Crying, arching back etc. Then after all that baby is not hungry enough to want the solids. So I force it. This is a nightmare! It goes everywhere. Baby is stressed and crying. It goes against everything they say about making meal times fun and relaxed. I told the paed I just wanted to give my baby milk since solids is so horrible but they persuaded me saying baby needs to learn to eat. I never knew it would be like this. During pregnancy I tried to think of sleep deprivation or sore breastfeeding but I never thought my baby would refuse to eat. What is worse is all the professionals who are meant to help make out that it is no big deal. My baby in pain - refusing to eat is a big deal! Why does it take so long before any of the professionals actually act? And still to this day none of them have actually asked to see my little one feed. You would think that would be the first thing they would want to see. Only the paed saw the video that I choose to take along so that someone would actually acknowledge there is a problem. So much for believing a mothers instinct. It is really hard to get help for your baby. It shouldn't be like that. They should believe you regardless of how many babies you have had one or six!
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#2311087 - 09/12/11 11:51 AM
Re: Baby with oral aversion
[Re: Mum of 1]
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Enthusiast
Registered: 18/03/09
Posts: 320
Loc: Manawatu
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Do what feels right to you. Plunket were useless with us, and it was more the moral support of ladies on this forum that got us through. Plunket guidelines are for "normal, healthy, full-term babies". We would be told stupid things because people just didn't understand the reality of it. We had a great peadiatrician, but the dietician and speech language therapist were of no use to us. We force fed for a while on advice from professionals and it was horrible - and I have to say it didn't actually achieve anything except making us all unhappy and risking a full on food aversion. I couldn't understand why my children wouldn't drink, it didn't make sense and no one understood how difficult it was except me and my husband who were living with it on a daily basis. I can honestly say I did not bond with my children until they were over a year old, up until that point I was just their nurse (and not a particularly good one at that). I'm sure you have tried heaps of stuff, but some advice we had was to make solids very milky, so they were getting lots of their milk that way, but it was also a way to slowly introduce new tastes and textures. Once you can try the baby custards, yoghurts or baby muesli (we lived on the little red Watties tin until almost 18months, mixing it down with milk and yoghurt). If she likes pears and apples then you could mix that in with the baby custard or yoghurt. Also mixing milk with some of the savouries is good. I used to make my own pumpkim, kumera mash and as they got older I added other things to it including courgettes, peas, and other veges (all pureed until they were 18 months). We used Karicare AR formula as my girls couldn't tolerate Neocate. They were on losec and I do think this had some impact on their appetite (although this is only my belief not a medical view). Once their medications were reduced their appetites seemed to improve. Our feeds used to take an hour per baby, and would end in tears all around. We didn't have good weight gains and are still in the bottom 3% but then they were under 3 pounds each when born. My husband also rigged up a system where a dummy was attached to a tube and a bottle, because they would take a dummy, but we had little success with that. Dream feeding was our answer as it took the stress out of feeding, DD1 would be fed in bed with the bed elevated and just as she was falling asleep we would put the bottle in and she would drink, getting her up to burp and wind etc. DD2 would be fed in our laps, we would rock her until she was just asleep and then put the bottle in and she would drink. This just removed the stress around bottle feeding for us and allowed us to remove the NG tubes. The medical professionals did not like the feeding in bed option because of choking risks and we couldn't start daycare until they fed properly. But like I say everyone's way to cope and survive is different and you do what you need to. Big hugs 
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#2311141 - 09/12/11 01:59 PM
Re: Baby with oral aversion
[Re: Armadillo]
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Enthusiast
Registered: 13/10/05
Posts: 221
Loc: Waikato
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Hi there - my 4.5 month old is on losec for silent reflux. Feed times are generally a battle, but she is very happy and placid in between feeds.
So I am TRYING not to stress toooooo much about all this, and my way of coping is to feed as she is going to sleep. So I give her a small feed (one side, a couple of mins max, normally pulls on and off crying) - when she first wakes up. Then the other side, basically her main feed, is as she is going to sleep. So I feed to sleep at all nap times and the second she stirs during the night I feed her. She is a good sleeper (by my standards ;)) and I dont need to feed her to get her to sleep, but I do need her to be sleepy and relaxed to do a decent feed.
Also, re the solids, if your baby likes fruit/pears - could you just stick with that for a while? To remove the stress for you both. My older kids (all non-refluxers) were more keen on fruit for sure for a long time, so didn't get many veges/meat. Also, (and I am certainly no expert in this, and this is my first reflux baby and we haven't got to solids yet), but the 2 lactation consultants I saw both warned against trying to force feed as it could make the aversion worse (in terms of breastfeeding though).
Follow your gut and goodluck, its so hard. You're doing a great job.
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#2311294 - 09/12/11 10:00 PM
Re: Baby with oral aversion
[Re: firsttimer]
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Beginner
Registered: 07/12/11
Posts: 12
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The approaches to get milk into my little one have changed over the last 6 months or so. When she first started being fussy I did have more success on the breast when she was sleepy at night. But since she was drinking so little during the day I started expressing to keep up my supply and in the end I just purely expressed and then the bottle battles began. Sometimes if I keep her up during the day long enough she will do sleepy feeds but at other times she is still too alert and this doesn't work. I just have an overtired baby who then won't drink or sleep. I have done the whole snacking every 2 hours and I have done the make her wait as long as 5 hours so she is really hungry - both just as frustrating when she doesn't drink much - grizzly and irritable in between. The sad thing was she was such a happy baby early on I used to call her my happy starver. I wonder whether the change in formula has made it slightly worse. They say the breastmilk has a natural antacid. But I couldn't keep up the expressing. Initially it would take 20 minutes to get enough milk for the next feed. That was enough when it could take well over an hour to get the milk into her. But then I couldn't get enough after 20 minutes and it was taking up to an hour to get the same amount as before. I think the stress must have taken its toll on my supply. Plus I was on a dairyfree diet to try and rule out dairy problems after she had vomited up normal formula previously when I was unable to feed baby during one weekend and my husband took over. So... after some convincing that I was exhausted and that mentally I would cope better I stopped expressing when baby was almost 7 months. I'm glad I lasted as long as I did. When I was pregnant my goal was to at least breastfeed until a year. That was before this all happened so I guess I did all that I could. I hope I have better success with our next. I do have more energy now to battle the feeds since I'm not producing it. It also takes the guess work out of the fact that it is something that I'm eating. It was hard to stop though since I knew that breastmilk would be better for her reflux and normal health. Oh well you do what you can.
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#2311579 - 10/12/11 09:31 PM
Re: Baby with oral aversion
[Re: Roz]
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Beginner
Registered: 07/12/11
Posts: 12
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Initially when granules were prescribed we gave 1/2 capsule twice daily. Prior to that we gave the suspension twice daily. But we hadn't seen any difference to total dose once daily. Then Paed said we could up to 3/4 capsule twice daily. But it was such a hassle to separate out granules so I told paed I would do total dose of 15 mg once daily. But I figured maybe morning dose wears off and maybe that why baby not getting better. So going back to separating out 3/4 capsule twice daily so still only 15 mg total for the day. (I probably didn't word it right first time.)
My baby is on Neocate to rule out milk allergy causing inflammation as well as reflux. But hasn't made a difference. At least baby doesn't vomit it up like with standard formula.
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#2312360 - 12/12/11 04:02 PM
Re: Baby with oral aversion
[Re: Mum of 1]
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Legend
Registered: 16/08/01
Posts: 4584
Loc: Prebbleton, Christchurch, New ...
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#2318324 - 24/12/11 12:21 PM
Re: Baby with oral aversion
[Re: Roz]
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Beginner
Registered: 07/12/11
Posts: 12
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We got the results of our PH Probe. Apparently my baby's reflux is normal for age and that baby is not refluxing when crying. So I don't know what to do now. We have no more appointments with paed. We are currently on Neocate because she vomited up normal formula and totally refused Pepti Junior. The prescription will soon run out for that.
When we took her off the meds for her PH probe baby got worse and worse taking only about 25 mls from bottle and then I used Youtube to distract to get some more into them and then I had to tip the rest into solids. Then baby refused that so back to using Youtube to distract in amongst the crying while eating. The med prescription will soon run out and my GP doesnt think there is anything wrong either. Youtube watching goes against everything I believe about letting babies watch over stimulating media and watching video clips while eating! But only thing that distracts enough to get food in.
What do I do now? There is no hope and my baby wont eat!!! The worst thing besides that my baby is forced to eat at every meal is that no one believes me. I am going crazy! I know this is not right and yet every professional seems to think there is nothing wrong. So is it normal for a baby to at every meal to refuse their bottle even after 5 hours or more and then to refuse their solids. If the solids are slightly lumpy they start crying. Only when really sleepy to they desire more from the bottle. Before that point you have to put up with a tired miserable baby and not knowing if they will actually drink or whether you will just have an overtired hungry baby. In 2011 you should be able to get help for a baby who won't eat or drink. Because I persevere and don't let my baby starve or get dehydrated baby puts on weight -catch 22 because then baby doesn't look like there is a problem but when I tell professionals and they do nothing I have to keep up that hard slog.
I need help but from who? We will pay for help. We just don't know how to access any! I am desperate.
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#2318335 - 24/12/11 01:07 PM
Re: Baby with oral aversion
[Re: Mum of 1]
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Legend
Registered: 16/08/01
Posts: 4584
Loc: Prebbleton, Christchurch, New ...
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#2318477 - 24/12/11 08:50 PM
Re: Baby with oral aversion
[Re: suomi]
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Grand pooh-bah
Registered: 29/08/04
Posts: 1907
Loc: North Island
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What an awful situation for you to be in, I understand how stressed you must be right now  I was in pretty much the same situation with my son, except he had GORD confirmed by pH probe and I had the medical team on our side, you obviously don't which must be a terrible place to be. Logan was tube fed from birth - 4months, then from 6 months onwards so we didn't have the battle with him to eat x amount of calories once his tube went it, but his oral aversion remained for a long time. The one thing that changed our lives was finding this website http://www.notube.at/about-us/philosophy It is for tube fed kids but the theory is exactly the same for non-tube dependant aversive children. After reading and emailing back and forth with the Professor we found out we had been doing the exact opposite of what was helpful for our son. Basically they believe that babies/children need to learn autonomy over their eating - to learn that they are in control of what they eat, when and how. With our kids with oral aversions we try to coerce, force, encourage, reward etc, they learn not to trust us because we make eating unpleasant. Imagine if someone decided how much you had to eat and when, then did everything they possibly could to make you consume what they have decided you should eat! As adults we will never win the battle, it is the only control a bub has is to refuse. So, what we did and what I would strongly advise for your situation, is to completely back right off (I know it is hard with a baby), to let her be around food in a non-threatening way - give her a pot of yoghurt and a spoon, let her tip it out, squish, throw it even. If some goes into her mouth, great, if now just leave her to have fun. Give her lots of different textured foods, let her help make a fruit salad - 'posting' the fruit into a bowl. Just try and have fun with food. I would see how long she goes without food, she will be fine going longer than 5hrs, would she drink juice from a straw? Those little boxes of juice can be fun for a bub. When she does eat or drink anything don't make a big deal of it - eating food is normal, something we are all born to do, it doesn't need an audience clapping and cheering! Also expose her to a lot of non-food textures as well, shaving foam, wet sand, playdough, slime etc. Kids with oral aversions will be texturally aversive with their hands/feet as well so it is good to challenge that. Do you have speech language input? I found ours next to useless, so it you aren't necessarily missing out on anything if you don't. I hope this might help you, happy to offer you any more suggestions if you want. Big hugs to you and your family.
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TTC as a gestational surrogate for a long 18 months...
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#2319159 - 28/12/11 11:21 AM
Re: Baby with oral aversion
[Re: Callog]
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Member
Registered: 17/11/11
Posts: 73
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Reading your story I feel so sorry for you, hope you are ok and you will get thru this. Where do you live? Cause in the Waikato at the Waikato Hospital there is a Mother Craft Unit there and they help any mum with any problem with their baby, from feeding to sleeping to just totally not coping mum if you dont live in the Waikato look into it around your area on the net or local phone book. My baby is tube fed and soon we are going in to see if they can help us get her onto the bottle as she was breast fed but has dairy allergy so on neocate and has severe reflux so when we tried her on bottle it went so pear shaped she dropped to 3lb 12oz(looked like baby rabbit) so in end feeding tube was put in now thriving but just have to get the bottle sorted now they hoping it being so long she would of forgotten all about it (fingers xd. keep us updated hope things work out very soon for you 
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7, happy Chucker 5, Very Nasty Reflux 3, Reflux & Dairy Allergy 2yrs, PREM, Reflux but Losec did trick 8mths, PREM, Lactose & Dairy Allergy, other food allergies, Severe Reflux, Oral aversion, sight problems, global development delay, Mic-Key button fed, Nissen Operation done.
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#2319562 - 29/12/11 10:08 AM
Re: Baby with oral aversion
[Re: wuz]
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Member
Registered: 17/11/11
Posts: 73
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Thanks WUZ - yes sorry you dont have to live in the waikato is just if you live a long way away it may be difficult for you to get here and stay thats why I said if there anything round you if you dont live here but def go to your GP and see what you can organise  good luck.
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7, happy Chucker 5, Very Nasty Reflux 3, Reflux & Dairy Allergy 2yrs, PREM, Reflux but Losec did trick 8mths, PREM, Lactose & Dairy Allergy, other food allergies, Severe Reflux, Oral aversion, sight problems, global development delay, Mic-Key button fed, Nissen Operation done.
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#2324583 - 10/01/12 09:21 PM
Re: Baby with oral aversion
[Re: wuz]
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Newbie
Registered: 06/03/07
Posts: 41
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hows things going? I really feel for you I know what its like, can you try and go to some private pead that will listen and help? Im still trying to find one that will help us! Im the same my baby is not failure to thrive because I spend every moment trying to get milk into her so she grows! and because of this most think there is nothing wrong, but they dont know what you go through to get milk or food into them
hugs hun hope things have improved
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#2324792 - 11/01/12 10:15 AM
Re: Baby with oral aversion
[Re: kmb06]
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Beginner
Registered: 07/12/11
Posts: 12
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Thanks. I just read another post that said they tried several GPS and Paeds before someone listened. Maybe we will try another private paed. But you feel so frustrated that no one will listen so what is the point. (Apart from the fact that I can't stand watching my baby suffer!) This has been going on for months and my poor baby hates every feed. I can't understand how no one thinks that it not right. Yet all the mothers around me that I talk to say you need to see someone and yet the professionals just think she is fussy and when she can feed herself she will be alright. But what am I suppose to do in the mean time - let her starve! It is so exhausting just feeding her let alone trying to explain the situation to a professional. I can't believe in 2012 in NZ this goes on where people don't listen to a mother about her baby - it is really wrong!
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