What to do next?
Printed From: OHbaby!
Category: Support
Forum Name: Reflux and Allergy Support
Forum Description: Struggling with a refluxy baby? Looking for tips to deal with allergies? Share your experiences here.
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=38304
Printed Date: 27 November 2024 at 8:49am
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Topic: What to do next?
Posted By: snugglebug
Subject: What to do next?
Date Posted: 07 March 2011 at 5:41pm
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My boy has had reflux since 3 weeks old. He's on 10 mg of losec in the morning and 10 mg at night, given with a small amount of pear half an hour before feeds. The last week I've also been giving him gaviscon to help with the spilling, as he does massive spills a lot of the time.
Most of the time, he's a really happy smiley baby but from time to time we get these bad reflux flare ups. Like today, he has been refusing to eat much and is arching stiff as a board, screaming when the bottle comes anywhere near him, won't lie down or sit in his rocker, has to be held. I have seen the doctor lots of times about it because he seems to have a lot of tummy trouble- constipation, lots of farting, and draws his legs up a lot. His pain always seems to come from his tummy. She never really has any answers. I saw a paediatrician too but they said he was fine, didn't listen to me much as he was smiley and the picture of health that particular day. I have wondered if he has a milk intolerance or something like that. He is formula fed, and currently on Novalac constipation formula which had been keeping him really regular and agrees with him well, but since Ive been using the gaviscon he has become constipated again. I haven't put him on a thickened formula as I suspect it will make his constipation worse? And doesn't gaviscon do the same thing, or am I wrong about that? I guess I just don't know what the next step is. Do I see another paediatrician? I have been reccomended one who knows a lot about reflux. Was thinking about trying the hypoallergenic formula you can get from Karicare to see if that would make a difference. But I'm scared to change his formula as when I did it in the past it was not pretty. Or should I be trying lactose free or something like that? Just want to know what I should do next to help my baby, as visits to the GP really do no good at all ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow"> 
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Replies:
Posted By: kebakat
Date Posted: 07 March 2011 at 6:09pm
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What standard formulas have you tried?? Daniel had a constipation issue with some formulas so I was given that novalac stuff to try, didn't really work. But S26 standard (not gold) was fine with him, its fine with Alex too. Both my boys have/had silent reflux.
Alex is a bloody awful feeder. I'm not sure if thats just him or its reflux. It can take anywhere between 30-90mins to feed him. For his tummy, put infacol in every bottle, that will help with wind. Try rhuger as well, that also helps with wind as well as reflux. That may ease some of his tummy pain. Infant gaviscon is constipating so I wouldn't use that unless you have to or have something to counter that side effect like lactulose which helps them go. |
Posted By: snugglebug
Date Posted: 07 March 2011 at 6:20pm
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He's had Karicare gold, then normal Karicare which really didn't agree with him, I tried him on S26 for a few days but things didn't improve so I took him off it but I might have been a bit hasty. Once he went onto Novalac he was good but the problems have never really gone away.
I have got colloxyl drops for constipation but the doctor said not to use them all the time, and with gaviscon Ill need to use them all the time. It's hard because his spilling is massive without it. I've got infacol but never really used it so I'll give that a go, thanks ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: kebakat
Date Posted: 07 March 2011 at 8:47pm
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Karicare made Daniel really really windy. But plain old S26 has worked well with both my boys.
If you give a few mls of cooled boiled water throughout the day does that help with the constipation?? Infacol is great. It helps them bring up wind really well. You really need to use it consistantly though because he will have wind in his system and you need to get it all out and then keep it out. |
Posted By: T_Rex
Date Posted: 08 March 2011 at 8:26pm
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Next step - get your DH to take a collection of videos of him having a bad day. Then take those along to the doctor/paed and show him/her. I had endless problems too, with DD being the picture of health in front of the doctor but a nightmare at home. Our breakthrough was when she spilled massively all over me just as the doctor called us in, so she saw how much came up, and also that I hardly flinched, just mopped it up and continued, which I think showed how often I was dealing with it. Especially as she then asked how long since DD had been fed and I said over an hour.
But you can't rely on the baby to perform on cue, so take the videos, then you've got the evidence to say THIS is what you want help with. Good luck! ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: KH25
Date Posted: 08 March 2011 at 8:53pm
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Good idea about videoing him. How long has the latest flare up been? Zac has been arching and crying during feeds for about a week and I kept thinking that he was going to get sick (DD was sick with a cold) and he finally came down with it yesterday so I'm thinking it was because of that and he might have had a sore throat or something. And I know Noah has a cold too so maybe that is related? You could try and ride it out until he is well again and see if he gets any better. I'm actually kinda glad that he did get the cold as I'm blaming that for his reluxy symptoms, otherwise I have no idea what I would do as he's on the max dose of losec with gaviscon in his bottles lol. ------------- Kelly, mum to DD, 19Jun06 (26wks 1lb15oz) DS1, 24Oct10 (32wks 4lb11oz) and DS2, 31Dec11 (32wks, 4lb11) http://lilypie.com"> 
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Posted By: MinaNZ
Date Posted: 08 March 2011 at 10:16pm
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KH25 i feel your pain, Callen was the same for the first 4mths of his life. The only difference being that he would swollow the chuck and never threw up and was always unhappy. We too try all sorts of formula but nothing really helped, I did find that renitdine helped a bit but not 100%. My MIL rang the hospital and spoke to all the dietitians until one of them agreed to meet with us. We found he has trouble with lactose or milk proteins. She tried him on pepti junior which didn't work at all, and then tried him on Neocate and after a week we had a totally different son. He's now been on it for over a month and apart from the teething he's such a happy wee boy. He no longer crys all time, doesn't draw his legs up or arches his back and the reflux went away. He doesn't have problems going toliet anymore and is happy as on solids and formula. You have to keep pushing as hard as it is, and i too found noone listens to you especially if your a first time mom.
We also tried the losec and gaviscon, which did nothing just constipated him. If you need any other info just pm me i'm happy to help or if you just need to vent. Good luck! ------------- http://lilypie.com" rel="nofollow"> 
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Posted By: snugglebug
Date Posted: 09 March 2011 at 6:23pm
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Mina, I have long suspected he has lactose intolerance/milk intolerance, it's clear he has reflux but he seems to have something more than reflux going on as well. I am going to take him to a different paediatrician than I did last time and get my doctor to write a referral, so hopefully he will listen to me and let us try neocate.
With neocate, I know it's really expensive if you don't get it funded. Can anyone buy it if they are willing to pay the price, or do you still have to have a prescription? T_Rex good idea about the videoing, I will definitely do that as he is such a chatty, smiley baby when it's not bothering him, you wouldn't believe his other side if you never saw it. My Mum looked after him for an hour today and he screamed the whole time and she could do nothing to help 
KH, yeah you could be right, his reflux has been playing up a bit lately but nothing like it has this week when Ive noticed he's been sick as well. He only started extreme arching and refusing feeds altogether this week, usually I could coax him into it before. I hope it is that he has had a sore throat, he seems in so much pain :( He's 4 months old on the 20th and already showing interest in food so I think he will have to start solids before 6 months, so Id like to get this under control before I do that. I heard somewhere giving them a bit of baby rice cereal can be helpful, is there any truth in that? Thanks for all your advice, this really is hard as I thought we were on top of it ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: MinaNZ
Date Posted: 09 March 2011 at 6:37pm
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I know there is a chemist here in Palmy that sells it full price. Not sure if this is the norm or not, you could try to ring Neocates. ------------- http://lilypie.com" rel="nofollow">
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Posted By: KH25
Date Posted: 09 March 2011 at 9:12pm
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I've heard Dr Liang is meant to be THE man to see about reflux/allergies in Auckland. Contact details http://auckland.2cu.co.nz/listings/21166-dr-allen-liang - here
Hope he gets better quickly!! ------------- Kelly, mum to DD, 19Jun06 (26wks 1lb15oz) DS1, 24Oct10 (32wks 4lb11oz) and DS2, 31Dec11 (32wks, 4lb11) http://lilypie.com">
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Posted By: snugglebug
Date Posted: 09 March 2011 at 9:46pm
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Excellent KH25 as that's who my doctor reccomended so I'll call him tomorrow, thanks for the details.
I will call Neocate Mina, thanks ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: T_Rex
Date Posted: 10 March 2011 at 8:51pm
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Solids were the magic solution for us. We did BLW, starting at just under 5.5 months. I quickly figured out that a rice-milk pikelet after each big milk feed seemed to soak up just enough of the liquid to keep food mostly down. I would keep a batch in the freezer and just microwave one as I needed it. She cheered up within a few days of starting solids and thank goodness she did, cos at 6 months she got an ear infection that didn't clear until she got grommets at 12 months, and without that 10-day window into what she should have been like, I probably would have believed the useless doctors that there was nothing wrong and that she was just a boohoo baby.
Good luck with the new paed  ------------- http://lilypie.com"> http://lilypie.com">
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Posted By: snugglebug
Date Posted: 15 March 2011 at 9:57pm
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We went to see Allen Liang today and it was pretty good.
He has put him on some medicine called prepulsid 3 times a day which is apparently quite strong, only paediatricians can prescribe it. Anyone used it? He also suggested that I start solids and use simple carbohydrates eg kumara, carrot, pumpkin etc so that it will thicken the feed in his stomach. He is also having a blood test and allergy test tomorrow to see if he has any allergies. He didn't seem to think he did as he doesn't have any rash etc. He said I could try soy formula, but Im a bit reluctant to use that, would there be any harm in trying lactose free? I guess that we might be allowed neocate if he comes back with any allergies but maybe not otherwise, which I'm a bit disappointed about but ah well. Follow up appointment next week to see what the results of the bloods are ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: MinaNZ
Date Posted: 16 March 2011 at 8:46am
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Glad your getting some where but frustrating you didn't get the formula. I'd be interested to know more about the blood tests, we were told at palmy hospital that they couldn't test till Callen is 2yrs old. Also that if we were offered any tests to say no as they aren't accurate and could be a waste of cash. Why can't they all tell you the same info???!!! ------------- http://lilypie.com" rel="nofollow">
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Posted By: KH25
Date Posted: 16 March 2011 at 9:05am
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Bummer you didn't get the neocate. Surely if he just has a cows milk intolarence or something then he wouldn't get a rash, it would just upset his tummy? Maybe you could ask if you could just give it a go and if it doesn't help then at least you can say you tried. Have you tried a goats milk formula?
I haven't heard of that med, is it instead of losec or on top of? I guess its good you have different things to try and they didn't send you away with sorry we can't help lol! Good luck with starting solids ------------- Kelly, mum to DD, 19Jun06 (26wks 1lb15oz) DS1, 24Oct10 (32wks 4lb11oz) and DS2, 31Dec11 (32wks, 4lb11) http://lilypie.com">
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Posted By: werty
Date Posted: 16 March 2011 at 1:32pm
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Shame you couldn't try Neocate.
I'm off to see a paed tomorrow, and I'm hoping that he'll at least let us try it. I don't think Lachie has an allergy, but he is Lactose intolerant, so it wouldn't surprise me if he's dairy intolerant also. We're having a nightmare day today, we're trialling the Dr reddy's stuff (as opposed to Losec), it's day three and it's like he's got colic. Lots of back arching and crying.
I've started solids and have seen a good improvement - except today! ------------- 
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Posted By: AandCsmum
Date Posted: 16 March 2011 at 2:10pm
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99% of babies will do well with neocate if you can get them past the foul taste. They like to trial & rule out other things first.
Erinmc hang in there, it takes a few more days to work, and then the healing will have to begin. LittleN have you tried goats formula? That is what I was hoping to have Cooper on but unfortunately he reacted to that as well. Your local GP can request skin prick & RAST tests if you are worried about allergies & want the tests done. Didn't cost me anything for either myself or Cooper. ------------- Kel http://lilypie.com"> 
A = 01.02.04 & C = 16.01.09 & G = 30.03.12 |
Posted By: werty
Date Posted: 16 March 2011 at 2:24pm
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Yeah, we've been on Losec and saw a pretty good improvement, the GP just wanted to trial the other stuff since it's free. But, we'll be going back to losec quick-smart!! -------------
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Posted By: newmama
Date Posted: 16 March 2011 at 5:44pm
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littlen - My boy is the a bit younger than yours and has wicked reflux and i have him on s26 just the normal stuff and it really seems to work with him maybe give it another shot ? ------------- http://lilypie.com" rel="nofollow">  http://lilypie.com" rel="nofollow"> 
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Posted By: snugglebug
Date Posted: 16 March 2011 at 6:38pm
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Yeah I am disappointed about the neocate but he did say we could look at the possibility of allergies/intolerance next time depending on the outcome of the test so I will ask again next week.
If we don't get it, then I'll give goats milk a go. The paediatrician suggested soy but Im not sure about that haven't heard great things. The allergy test was a blood test, the paediatrician ordered it. It was terrible, they couldn't find a vein in his arm, so they pricked his heel and he had refused to drink his bottle this morning so he was dehydrated and not much came out, so then I had to get some fluid in to him then they did it again on the other foot, it was so so so so awful it took forever as they squeezed little drops out one by one and he screamed until he was hysterical :( Erin how did you find out your bub was lactose intolerant? I really do think mine is. KH, the medicine is as well as losec so I really hope it works. Im worried about him because he's only drinking about half of what he should at the moment, he's never done this before. Is there anything I can do to make sure he stays hydrated? He will drink water out of a little cup ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: snugglebug
Date Posted: 16 March 2011 at 6:42pm
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Newmama, yeah Im thinking about trying it again, as he's on a constipation formula but he's not so constipated anymore and it's very expensive.
Should he be on a thickened formula? ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: newmama
Date Posted: 16 March 2011 at 8:04pm
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nope Blakes isnt - in saying that though dare i say it on here i put a teaspoon of farex in his bottle last thing at night it keeps his milk down cause he is fairly spilly less vomitt means more food in his tummy and = longer sleep as no sore tummy - that was recomended to me from paed - heaps of people preach about its a choking hazard but to be honest he has never choked and a teaspoon is nothing - REFLUX SUX ha ------------- http://lilypie.com" rel="nofollow"> http://lilypie.com" rel="nofollow">
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Posted By: werty
Date Posted: 17 March 2011 at 5:01pm
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Lactose intolerance symptoms were: Rumbling/gurgling tummy as soon as milk hit it, colic like crying, Millions of watery, frothy poos per day, severe nappy rash. True lactose intolerance is very, very rare in babies, we had to do a poo sample to check it out. I've heard that some reflux and colic babies do better on lactose free formula without actually being lactose intolerant.
Lately, I've been giving Lachie his bottle, and letting him drink what he wants, then making up the rest of the milk with farex and spoon feeding him with a wee bit of pear or pumpkin. I do this once or twice a day after his fussiest bottles, which seems to be in the morning mostly He loves it! -------------
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Posted By: snugglebug
Date Posted: 17 March 2011 at 9:03pm
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Yeah I was reading that on the back of the S26 lactose free formula can that it might help babies with colic. So I may give it a try if the neocate is no go.
Basically aside from reflux he seems to have a lot of tummy pain, can hear the liquid gurgling/sloshing around in his tummy a lot, gets constipated, constantly gassy from one end or the other.. if not lactose intolerance, any other ideas? Or is this all reflux related? He seems a bit better after some solids and the new meds, he's finishing most bottles again but still screaming for a while but eventually taking them, which is an improvement. ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: werty
Date Posted: 20 March 2011 at 1:31pm
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Sounds very like a dairy intolerance to me. Intolerances are generally tummy/ digestion related as opposed to a full on allergy which is an immune response. But, I'm no expert. Our paed thought Lachie has mild dairy intolerance too but said as he's so 'well' in all other ways- it may not be a necessity to change to neocate as he should grow out of it in the next couple months. But, we've got a trial tin of neocate so I may see what happens in the next couple weeks. I don't really want to change it as apparently the neocate tastes pretty gross- it sure smells foul!!
A friend of mine gave me the numbers of a natropath in beachlands that she used with her dd. So successful that she was able to wean off losec and just use the natural stuff. I also have the name of an excellent osteopath in clevedon. Let me know if you want their names/ numbers. -------------
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Posted By: lostAmber
Date Posted: 21 March 2011 at 9:34am
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Liv has those same symptoms but is not dairy/lactose intolerant. It is all just part of their underdeveloped digestive system, it does get better though. We have to use a thickened formula as everything else just comes straight back up, we still get spilling with this but it's not anywhere near as much. And now that she is on solids things are going remarkably better!! Hang in there love, it will improve *hugs* ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: snugglebug
Date Posted: 21 March 2011 at 10:41am
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I have tried him on thickened formula since last Wednesday and he seems to actually be spilling more which is weird, big power chucks.
He's been on the new medicine for nearly a week no improvement. Sigh. We have a follow up with the paed tomorrow hopefully he can give us something else to do. Erinmc, my boy looks really well too he's thriving in every other way, does things before you'd expect, has great skin, really smiley happy baby so it's hard to get doctors to believe what he's like at other times. Thanks for the support LA, it really is hard so Im glad Olivia is improving ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: werty
Date Posted: 21 March 2011 at 1:28pm
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LittleN, Remember that reflux peaks at 4months, and generally starts improving at six months. So, just think of yourself as being on the downward slide now!!!
It's a bloody long, hard road though, especially when there's no 'cure' - just managing it(Barely somedays!!) I too have noticed a big improvement on solids, he doesn't spill nearly as much and is a lot happier and dare I say it...Sleeping for longer stretches during the day. (Furiously touching all wood around me...) -------------
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Posted By: snugglebug
Date Posted: 22 March 2011 at 12:58pm
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YAY
Im excited. Had follow up at the paed today and he gave us a trial tin of Neocate, and baby has had 210 mls of it after not having more than 30mls of formula this morning at breakfast. He only spilled once and not very much and no screams, yay. I know it's early days but Im optimistic and at least he drank it. He has also upped his losec and other meds and was talking more invasive tests if it doesn't help
------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: werty
Date Posted: 22 March 2011 at 1:16pm
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Littlen- did you sweeten the neocate to get him to drink it? -------------
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Posted By: snugglebug
Date Posted: 22 March 2011 at 1:23pm
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I didn't need to he took it right away so I was very lucky! ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: AandCsmum
Date Posted: 22 March 2011 at 2:43pm
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Wicked, they seem to know when something is right for them. ------------- Kel http://lilypie.com">
A = 01.02.04 & C = 16.01.09 & G = 30.03.12 |
Posted By: snugglebug
Date Posted: 22 March 2011 at 3:49pm
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How long till I should see an effect?
He seems better and is drinking it but still spilling a reasonable amount this afternoon ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: werty
Date Posted: 25 March 2011 at 10:50am
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How are you going LittleN? Any improvement with the Neocate now?
I went to the health shop yesterday and got some probiotic powder, so we'll see how that goes. The lady said that with a dodgy digestive system like Lachlan's it should really help him a lot. Fingers crossed! Does anyone else notice that if they accidently miss one dose of Losec, it has a real negative effect pretty quickly? I forgot to give Lachlan his avo dose on Wednesday and yesterday was the worst day we've had in a loooong time. I'm amazed that it would have such a dramatic effect after only missing one dose. Have now made it Hubby's job to remember the avo/evening dose when he comes home from work. -------------
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Posted By: snugglebug
Date Posted: 25 March 2011 at 11:40am
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We seem to be going well thanks erinmc, he takes the neocate well and his spilling is much less, he still screams sometimes when I try to feed him but I think it's more out of habit than anything else as once I get him to take the bottle he's fine, like he realises it doesnt hurt.
Got a big shock when he pooed black and green yesterday LOL but apparently that happens on neocate. He's sleeping really well too I don't know if it's coincidence or what but it's good either way. Just trying to chase up to get some more tins of neocate which is proving difficult that stuff is like gold. ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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Posted By: snugglebug
Date Posted: 25 March 2011 at 11:41am
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Also when we miss losec we definitely notice very quickly! So I think yes one dose missed can definitely affect it ------------- Me 28, DH 29 DS born 20 Nov 2010 (4 years old) #2 due October 7 http://lilypie.com" rel="nofollow">
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