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?

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.

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!

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

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.

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.

Hi Mum of 1

Did a doctor approve inceasing the Omeprazole to twice daily?

It is important to progress through the ages and stages of feeding but of course this is difficult when you struggle to just get milk in. We also had normal weight gains with Gem although feeding could be really difficult due to pain. I don't believe she had a true oral aversion - it was often just too sore to feed. We just kept on plodding along but we did have a paediatrician who believed us. It does sound like your baby is still sore. Have you asked to see a speech-language therapist? It may well be worthwhile.

Re the formula feeding - what formula is she on?

Fruits are acidic although pear is the least acidic and is the lowest in salicylates so a good choice is far as fruits go.

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.

Hang in there.
Hugs.

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.

Big hugs.

Will PM you.

Gosh, you are having a terrible time!
It sounds exactly like my second daughter was.
Where in NZ are you?
You could go and see a private paed, but it really depends on where in the country you are.

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.

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

Mother Craft could be a good option - your GP could refer you, you don't have to live int he Waikato. They can then observe and they have a paediatrician they use also which would be helpful.

I would say at that age and given how miserable bubs is that the dose needs reviewing. Also, I[d make sure you are using losec granules and not the generic dr reddy's ones.

I can see that solids would be a nightmare also given that baby doesn't really even want to eat. I suspect you need to sort out the pain first (unless it has all become behavioural now which I doubt).

Both my girls were stressy feeders. I found feeding whilst standing and rocking to help, also feeding in front of a running shower too.

Other than that, I'm not sure what to suggest. As mcuh as possible you need to work towards feeding being less stressful which is a hard one when bubs doens't want to feed. Maybe see if you can introduce some dream feeds (which hopeuflly would work) to then take the pressure off getting milk in during the day.

DD1 moved to finger food quite quickly, she hated to be spoon fed. Maybe try stuff in a muslin thing or finger food?

DD2 was very choky so she stayed on puree for ages, basically until she stopped gagging on finger food which was around 9-10 months. Prior to that she would gag if food wasn't thin enough or small lump and then vomit up everything. Used to gag on bottles sometimes too. Both mine had silent reflux and colic.

Also, I thought pH probes were fairly inaccurate at this age?

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.

my sis used mothercraft - went up from Gisborne and stayed maybe 4 days (not sure of length of time). she found it useful, they still struggled with reflux probs for a while after but it certainly helped.

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

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!

whats GPS? Ive just sent you a PM :-) I totally understand how you feel, we are going through exactly the same process, and because my daughter isnt fail to thrive they dont want to know, or think shes fine! it really is wrong, big hugs xxx

Hi Mum of 1

Where in NZ are you? So many things you say sounds like our situation.

With my first son we also saw a number of GP's at a medical centre and saw 3 private Paeds before we got the appropriate treatment for him. By that stage he had developed oral aversion and had 'chronic oesophagitis'.

With my second he was seen by 2 different private Paeds (one who said he was a normal healthy baby and advised to just keep breast feeding) before he ended up admitted to hospital with dehydration and had an NG tube inserted at 14 weeks old and things eventually got sorted for him.

SO don't give up - YOU know best if things are not right and you'll have to do your best to find someone who will listen. It sux but our current (fantastic) Paed who has an interest in feeding problems says GP's would very rarely see babies with these kinds of feeding difficulties, if at all in their entire career.

If you want to p/m me I could send you a couple of names of people in Akld who could help?

Good luck

I had baby's 9 month check today. Baby still refusing to drink/eat so asked if they would watch baby drink. They said they didn't have time today. But after I had confided that this is all taking its toll they had time to suggest going an getting some antidepressants! I am so mad! It took longer to discuss this than it would have to watch my baby drink -since baby doesn't drink!!! Plus I filled in another PEDs form listing my concerns. What the point? Nothing is done. Baby has put on good weight again and healthy. So apparently it is my problem??

So frustrating for you.

Re Dr Reddy's Omeprazole vs Losec, the funded Omeprazole is now Omezol. This may be better tolerated than Dr Reddy's Omeprazole was.

My Plunket nurse told me she has a theory about there being a lot of reflux in the suburb i live and she thinks it could be due to a cell phone pylon - I am not kidding, she actually said that! I am therefore not doing Plunket with my second son....

Feeding difficulties are so stressful and often misunderstood even by health professionals, and can be perceived as being a problem with the mother. It sucks you are not getting the support you need.

Is there a family centre near you where you could make a time to have someone watch you try and feed?

I went back to GP today. As feeds becoming even more difficult. They are finally going to refer to paed! 7 months later! We went private before. After I left there I walked to a family centre. My baby had only had 25mls since 7pm the night before. So I explained our history all over again to another nurse and she rang the area manager who came and said our case is an urgent referral for speech therapist. I felt listened to for the first time and finally felt like someone got it. I just hope new paed and speech therapist can finally make a difference. Hope is a powerful thing and it was really hard when we had not many other options. I am so glad that this forum exists as I would have thought that we were nuts and that no other parents have ever experienced this when your GP and other professionals just say your baby is fussy.

That is so great finally you getting the help you need and once you are in the system things happen fast specially with little ones as we have totally found out, i hope they can help your bub drink more, our hope crashed after a whole week in mother craft not even one suck on the bottle so now her NG Tube will be taken out and replaced with a Mic Key Button into her stomach But the nurses at mother craft were amazing trying to help us for that week so do mention Waikato Mother Craft to your Pead. Good luck and keep us updated

Mumto5 - I think there are others here who gastrostomy feed - not sure but I certainly do and have done for nearly 3 years now with my then nearly 4 yr old.

So don't hesitate to PM if you want to bounce anything around, vent about the nights you feed the bed instead of the child etc - BTDT here

Have you asked about a nissen too?
I've been told that a gastrostomy changes the shape of the stomach slightly and so can increase reflux (potentially anyway)and so they often do both ops at the same time. Thomas had both at the same time. He had his tube re-sited in April so I know a bit about recovery times with and without the nissen - although T's re-site was apparently tricky and took way longer in theatre than anyone had expected.

Mum to 5: I just checked out Mother Craft unit on the net. It looks like a great service for Mums. I don't live in the areas that can get referred there. But thanks for suggesting it. I wonder if there is something like that in other parts of the country? Nothing like that has ever been suggested by anybody I have spoken to. It is amazing that the Mum has to do all the searching for info and you don't even know that these things are out there when health professionals know that services like this and speech therapy etc exist.

Mum of 1, Is a awesome place, I saw babies change so much in the week I was there, it was amazing. This is the only one in the country so thats a bit rough. You are very correct that you have to do the searching, Im not sure why we cant get this info easily maybe its just cause the health system so busy or they just dont care enough, who knows but good luck. I have PM you (well new to this so I hope i did lol)

Mum of 1, good that you ahve been referred to someone. It might be worthwhile seeing if you can spend some days at the Family Centre you went to. That way they can see how a day goes (rather than just one feed etc) and build up a history which may be useful when you are referred to someone else etc. Good luck and hugs.

Just an update.

Our paed is going to refer for a scope to be done. Has anyone had this done with their baby? Is this the best approach?

We are now on 20mg of losec. It has made a slight difference in that baby is now drinking 50mls and sometimes up to as much as 100mls stopping and starting before I need to use Youtube/video to distract. In the month prior it was so hard that baby was always refusing the bottle and even with distractions it was such a battle. I am still unable to get any solids into them without any Youtube/video apart from one or two bites on a rice cracker on a little suck at a banana or another similar finger food before they are thrown away.

I am hoping the scope is the best approach to see what is going on. Quite invasive. Will it be helpful or a waste of time and extra scary procedure for my baby. But don't know what else to do since already on a very high dose of losec and still hates eating. We have the speech therapists input now too which I am hoping will be helpful.

In other parts of the country there are units such as the Mothers and BAbies unit in Christchurch, but this is mostly for mothers who have severe post natal depression - common enough for mums coping with reflux. Family centres are another good place to get support.

My daughter first had a gastroscopy at four years of age. It does give a good amount of information.

Hopefully with the increase/addition of Losec you will see more of a change. It can take up to three weeks to see the full effect.

Hang in there. Glad you are getting help.

Been a long road for you, keep updating here as I always check to see how you and your bub are doing. Good luck with the scope hope it helps. Glad the losec increase is helping out a little bit, maybe the paed will increase it again since there has been a change but not a huge one. Hope they get you guys thru fast so you not waitin for a long time for the appoinment. Good luck Just remember you are doing an amazing job