BabyWhispererForums.com
EAT => Food Allergies => Topic started by: babybarr on October 13, 2013, 19:14:37 pm
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I'm thinking the little boys are milk intolerant. Ds1 was well still can't drink much pure milk and I think these two maybe going the same way. What were your los symptoms and when did you make the switch and were you right?
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Hi Laura,
Sorry to hear you think your LOs might be MPI :-[
Sure you have seen these links before but here they are again
MSPI - lots of info here - please read!
Does my LO have food intolerances?
Have a look esp at the 2nd link to see if any of those symptoms are present
x
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Hmmm with M & S it was ezcema, mucous in poo, some foul spit up, and general fussy/windy stuff. With E I got smart and was down to almost no dairy before she was born. For her it was wind/foul smelling spit up/fussy. No ezcema or mucous poos so far.
Just tried some super processed dairy last night and she is paying for it today. I really miss cheese, but I am fairly certain dairy and soy are a no go (had been using soy milk in my coffee and while symptoms were better dairy free they werent gone entirely until I took that out, but not gone so far as hidden soy and things were great).
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Big red flag for me was the mucus...but also maxed out on reflux meds but still fluxing, colic behaviour - but all the time or all night long (more like tummy cramping, gas, wind, squirming, grunting) touch of eczema between the eyes. Refusing to feed
Hugs lovely. Have you noticed a few things? X
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Excema, loads of spit up, stomach cramping, general fussiness and constipation. After we switched he was much better.
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Silent reflux, very gassy, loose nappies and over eating as he was sucking to get rid of pain. we hardly slept for the first 5 months. paed put him on neocate and never looked back. Bit harder now as he's nearly 13 months and still has allergy.
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Horrible exploding up the back poos, reflux, feeding difficulties, crying with pain, eczema, hives & projectile vomiting when given regular formula milk, and FTT :'(
Wasn't fully sorted out until 6mo when he switched to Pepti 1 formula as I had no milk left even though I'd gone dairy free.
We should have sorted it out sooner but I had no idea what it was and the pead was useless :(
Get a trial of hydrolysed formula asap, you've already had a child with mpi so that is good enough reason for it ti be very likely in subsequent children!
Good luck :-*
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Have you noticed a few things? X
well we've already changed formula from a "heavy" one to something lighter which helped for a while. Then H was still really uncomfortable, squirming and periodically screaming so put him on an "anti colic" one which helped but he's still not right. He's also really constipated. Then J is just also squriming and screaming. Now I know they cry but they're not content. They grunt and groan and squeal yk? Plus both of them are now more frequently being sick and J reluctant to finih his feed...
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Hugs Hun, not what you need is it :-*
I think HH idea is a good one. Can you get some hydrolysed formula to trial?
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I think HH idea is a good one. Can you get some hydrolysed formula to trial?
I agree. So far we are 3 for 3 with mpi so must be a genetic component.
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Can you get some hydrolysed formula to trial?
Saw a gp today (about my blood pressure) and said I thought they were mpi like O (O still cannot have too much dairy and can't drink "neat" cows milk on a regular basis) and she said well they're still so little and stick with the anti colic formula and see how you go ::) I'm thinking about getting an appt with my usual GP who also knows everything to do with O... Feel really fed up about it tonight which is my gut nagging me I think :-\
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I think you should push for a second opinion - I know that people have been fairly sceptical about my diagnosis of mpi for ds, but he screamed all the time if I had dairy and didn't if I didn't so it seemed to be a bit of a no-brainer. We tried giving him a dairy dessert over the summer and he woke up every hour overnight, so I am still convinced that he is mpi even though I haven't ever really noticed the textbook symptoms.
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Thanks Clare, you'd think I'd listen to my mummy gut a bit more by now what with everything wouldn't you ::)
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Hugs Laura! You are listening to your mama instinct :-* it's always so much harder to work out what's going on when your in the thick of it.
I agree wth Clare - go for another opinion xx
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You've got some great advice here hun but wanted to drop off some support and hugs.
I agree about getting the second opinion. And your own gut. If you think 'something' is up then you're probably right. The behaviour seems to indicate discomfort. Hydrolized formula may make a big difference.
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If you were nearer i'd gladly let you have a tin of neocate to try hun. Think postage costs would be huge.
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Pinklady - is that what they prescribed you in the first instance or did you have to try nutramigen first?
The health visitor is called me this afternoon (hopefully) so fingers crossed she's of some help... if not I'll be going to my gp later in the week. My mum said she doesn't think there's an issue with dairy ::) despite nearly all of her ( eight ) children being dairy intolerant!
ETA - they seem to want to drink a lot of milk would that go against my theory??
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My girls werenall little piggies when it came to eating (both bf and formula). I wonder if the mpi is causing a bit of reflux does the drinking sooth it?
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They gave us lactose free for a start but didnt help so neocate was what they gave us next and hey presto it worked.
Our lo was also a guzzler. I think it helps with the reflux.
Also once we were on neocate the reflux went too. I think our paed is very understanding compared to some.
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Do you difference between neocate and nurtramigen?
Heidi I do wonder if reflux may have a part to play at some point.
Spoke to hv she agreed we should try hypo formula but said it has to be done via gp so going to bk an appt tomorrow. She did say though that because they're on a slightly broken down formula already that they will likely drink more as it digests quicker. So I'm going to try slightly bigger btls cos they haven't been sleeping long between feeds at night esp Harry.
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As far as i know nutrimigen still contains milk protein but its broken down to the point that the body doesnt recognise it and neocate is man made. I think neocate is more expensive too.
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So got a gp appt with my usual gp (who knows all of O's issues etc) and so hoping she'll be more understanding. I have concerns over nutramigen... mainly cos O had awful diarrhoea on it and so we stuck with soya in the end and also I understand because it's easier to digest then they may want to feed more frequently - this will be really tough going with 2. They already feed 3hourly and when there's 2 there's not a lot of time in between. Will it also aggrevate refulx as it's quite watery? Just trying to make sure we don't make matters worse! (really hoping there's no signifcant reflux this time)
Pinklady (sorry I don't know your "real" name!) do you find your lo gets more hungry on neocate?
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Neonate is absorbed into the body quite high up in the digestive system so often LOs need less of it to be full.
Here's a paragraph on what it is from the site. http://global.neocate.com/neocate-option/what-is-neocate1/what-is-neocate.
In nz it is only available via prescription through peads...unless you want to remortgage your house ;)
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Saw my gp who had absolutely no issue with trying a different formula. She has prescribed them aptamil pepti 1 which I know nothing about. She did say she wasn't the best person to know about all the different formulas (and there certainly was a long list all with slightly different things missing or included!) and so thought that would be a good one to try especially as the boys have already been on aptamil. She was happy for them just to go to soya if I wanted to as O was on that...
Thoughts? Any of you tried the aptamil or know of someone who has?
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Sorry no experience with Aptamil, we had the older girls on soy. Glad this dr was more receptive!
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Us!
Pepti 1 sorted DS out very quickly and it actually tastes good :)
Give it a try and see how they go, everything crossed it helps :-*
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Brilliant thanks HH just what I needed to hear :) (you don't need to post on my other thread I've just started to get some more opinions! :P ;) )
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No experience with pepti sorry. I didnt notice that lo was more hungry. He had 4 7oz bottles a day but i think for his age it was pretty normal. He's 13 months now and still has 4 6oz bottles which hv has said us fine.
So glad you got to see a more understanding gp. I know several people on here have had more of a struggle.
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Hope it helps Hun :-*
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Yay for the helpful doctor. Hope it helps.
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Joe was MPI and had pepti first then went onto neutramigen......... Had no issues apart from gas during change over.
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I think the formula helped but I don't think it's completely workin. I'm not sure what to do. It's been a week now but the way they were on Sun and today I think something is still amiss. I'm just not sure about anything anymore!
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It can take 2-3 weeks for the effects of milk proteins to heal.
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Hugs, yes it can take a few weeks Laura
What's bothering you sweetie? Any reflux symptoms? Are they a bit colocky? Wind/gas?
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Squealing in pain, not settling to anything frequent waking and then settles to start hard crying 5mins later the evening fussing which had gone off a bit is back. Basically this formula from what I can gather is about 60% broken down which would explain why we've seen some improvement but I'm thinking it's not broken down enough yk? It's like something was a bit better but now it's flared back
Up. I feel like the new milk took the edge off but isn't enough yk? I don't think reflux but am keeping a close eye.
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Babybarr keep a diary. that is exactly what happened with us. he was on lf milk and it calmed him down a bit but was still not right. keep fighting for the milk protein free milk even if you ask for a trial first.
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Oh yes, I forgot your on pepti not neocate. ((Hugs)) yes it could well be they need the amnio-acid milk xx
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he was on lf milk and it calmed him down a bit but was still not right
What is IF milk? (assuming similar to what we're currently on)
What options are there for milk protein free milk? I know neocate is very expensive isn't is so thinking they won't want to prescribe that?? I'm assuming the next one they'll offer is nutramigen but again that's just very broken down isn't it?
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This is just from wiki .. I know very scientific :P
But if you scroll down to prep and content - variations en.wikipedia.org/wiki/Infant_formula it does give you basic info on the different options...
I'm probably little help as I'm not sure of how your health system works, or options available :-*
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Sorry! Lf is lactose free. Think other hypoallergenic formulas are nutrimigen lipil 1 upto 6months or lipil2 if older than 6 months. Think theres one called elecare too.
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I'm assuming the next one they'll offer is nutramigen but again that's just very broken down isn't it?
We got offered this from our GP. Think they might start on that and then go down to Neocate YK.
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Did you find nutramigen worked?
Pinklady what formula do you use
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I know neocate is very expensive isn't is so thinking they won't want to prescribe that?? I'm assuming the next one they'll offer is nutramigen but again that's just very broken down isn't it?
I think money is one factor but also taste :-\. I think that neocate is even more grim than nutramigen :-\
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Elecare is like neocate.
And yes I can say from tasting it that neocate tastes revolting, like metal smells! :o no wonder they don't want to drink it, you can sweeten it up though ;) x
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Our lo guzzles neocate lol. I think its cos he knew it stopped his tummy hurting. I dont know what the paed will tell us to put him on next though. He's 13 months but his allergy is still there :'(. We're going to try him with soy but i'm not hopeful.
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Hey PLA there is One for 12 mths + . We were given a tin for t to trial. http://www.neocate.co.nz/neocate-option/neocate-family-of-products/neocate-advance-vanilla-with-prebioctics
(Sorry Laura a bit OT)
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Not sure about flavoured stuff though. too much like milkshake lol
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(Sorry Laura a bit OT)
No worries :-*
So went to gp and now they are on nutramigen. I also spoke with O's pediatrician as he does allergy as well as immunology and he was saying it was the right thing to move them and he said that the next step would be neocate (as did the gp) so fingers crossed this is the answer as H had started to not drink his milk and he's normally the guzzler...
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Fingers crossed for you. :)
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Good luck, sounds like you have a good GP. So many ladies have to fight for HAF. X
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:D happy to hear you have a plan
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Need help! So they had two feeds xyesterday and seemed quite happy. Slept for nearly 5hrs straight which is a first and I got all excited then after their next feed - night time one and then also the second night feed- they have both been unhappy and periodically
Vomiting. So going to sleep fine and waking an hr later having been sick. Do you think it's just the transition
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Hugs lovely. Could It be a late GS? Did they have the 3 wk one yet? If not it could well be that. It was the first time I noticed Ts reflux starting.
On neocate T vomited a lot at first - I think he overfed ::) plus it's really watery compared to other formulas. Not sure about nutr.. We were on neocate
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It takes a couple of weeks hun for it to work its magic. See how it goes. Keep a diary on feeds and vomiting see if a pattern emerges.
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Glad you've got a supportive GP :)
ITA that it's the transition causing the vomiting. Also if they haven't fed much before then their little tummies need to expand if they are now taking more ;)
Vibes that things improve as it sounds like you are on the right track :-* :-*
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Rang the dr as they can't settle today cos they keep being sick... she has suggested using gaviscon in their bottles - so trying that now too. ::)
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At this age you don't need to worry about flavour - simply about what is the right milk for their tummies :-*.
And yup, neocate costs a bomb, but if they need it then they need it and it will be prescribed.
(((hugs)))
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Liz would the neocate help reflux?
So here we are... started nutramigen noticed a difference quite quickly BUT now they are vomiting loads since starting it. Gaviscon hasn't helped a massive amount and they are constipated :( 10 days in and now they are unsettled and unhappy again. I don't know whether it's formula or reflux. The weird thing is we weren't having vomits like this before the nutramigen - but maybe it's to do with age ???
Am going back to gp but want to have some idea of the best thing to ask for... meds or neocate??
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If it is MPI causing them to reflux then on neocate they should be vomiting less because the reason for their bodies refluxing has gone. However many babies have a degree of reflux due to immaturity of their digestive systems so they could still be vomiting the thin milk back up anyway IYSWIM. Have you though about using a thickener like carobel (providing it's milk free, I *think* it is) instead of gaviscon?
Gaviscon doesn't do anything for the acid, it literally is just a thickener so it may be that they need to move to the neocate to remove all trace of milk proteins and/ or trial some meds. Ranitidine is usually the first choice.
Laura
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Laura could it be a GS? Or, if Nut is as thin in consistency as neocate it will come up easily.
Neocate as far as I'm aware (liz may know more) is given more for the LOs inability to tolerate normal formula or Breastmilk. This isn't just for allergies, but things like eosophigus encephalitis. It is prescribed here for reflux but usually when it's identified reflux isn't the cause, but a symptom of something else and can not be controlled with medication or alternatives.
How is their weight gain?
I know it's not as easy as this but I would ask for a specialist opinion if you can be refered ASAP and see what they suggest. Meds such as PPIs and h2blockers dont stop vomiting remember they just reduce stomach acid. I'm wondering if a thickener could help - or if it would make things so much worse :-\
Posted with Laura
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DS1 ended up on omeprazole after rantidine and soya milk (we never tried hypo formula properly) this was at 7mths :(
Two crying babies at once and unsettledness is NOT fun and I need help, something has to give I just don't know what.
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Deep breaths sweetie. One hour at a time ok :-* I know it's so so tough! and two must be just impossible some days. You will get through this though. You will.
What does your gut tell you? Pain? Or just spilly? IMO if after the spit ups they are unsettled, ad they are showing reflux symptoms lie, hiccups, poking out their tongues and their spit up smells like acid. I think you want to go for PPI trial if your dr will give you one. With t I knew at 3 weeks something was wrong. I could smell the acid.
If you don't think reflux is the issue (acid reflux anyway) then maybe you want to push for the neocate first incase it's allergy related. OR see if you can get a thickener to keep the milk down. From your post it sounds like they are unsettled too though, it's not just spit up right?
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Just a wee hijack...poking out there tongues is a sign of reflux??? Oh dear.
And back to you Laura...lots of hugs, as you can tell from my first comment I am out of my element with reflux that is not caused by mpi.
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Heidi, only when accompanied by other symptoms. But yes when very little constant tongue poking or almost like lip licking is a sign. So is a dry cough...full list here though I noticed tounge poking isnt on it - both my boys did it a lot and my dr and pead commented though :-*
Reflux checklist for parents and Drs
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Thanks Sara!
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Our lo was on omeprazole and neocate with gaviscon. After 3 months on neocate we stopped the reflux meds and then couple months after that we stopped the gaviscon. How old are your baboes again? I think solids helped a bit with the reflux too but if they're still too young thats not really an option.
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I am out of my element with reflux that is not caused by mpi.
You see this is what I am wondering... whether the reflux is "just" caused by the mpi iyswim? So if we were to switch to something with NO milk protein whether the reflux would go - is this even a possibility ???
They def are refluxing and it's causing them discomfort - witnessed that first hand at nappy changing last night but again what is the cause or is it actually reflux. J will often aspirate too esp when feeding, and H's breathing monitor will go off so I wonder if that's to do with it coming back up during his sleep.
Our lo was on omeprazole and neocate with gaviscon
I'm fairly sure we'll have to see a paed rather than GP for omeprazole - yes? That's what DS1 was on - pita to get into them though ::) I think the gp would only prescribe ranitidine which we never found to be very good
They're just shy of 6weeks so solids def not an option!
Been up again since 4.30am, I don't understand why that feed causes *so* many problems. :( They both fell back to sleep when on me, just I had to do one at a time. DH already gets up twice with feeding and he has to work so he can't really help with that too.
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Big hugs babybarr. you're doing great. Have you been referred to a paediatrician yet? If not ask to be. We had to wait 2 months for an appt. Not sure what .gps can or cant prescribe so cant help there sorry. Omeprazole definitely helped with silent reflux. Just didnt take tummy cramps away.
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If it is caused by mpi, then yes, getting rid of all traces of dairy should clear it up. E has done much better since I cut dairy (and beef) but now she is all drooly, sticking her tongus out, sicking up nasty smelling spit up (yet she has sweet breath go figure), having awfuldays....but sleeps at night completely flat no complaints. These kids sure dont make it easy to figure out the issues!
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O used to sleep thru even though his reflux was bad. It's from exhaustion I think. It's just now he doesn't sleep!
Wwyd try the other formula without milk protein or go straight to reflux meds?
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If your gp can get the neocate quicker than a referral to a paed for meds I would sure be tempted to try it. How long have they been on their current stuff?
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O used to sleep thru even though his reflux was bad. It's from exhaustion I think. It's just now he doesn't sleep!
^^ this was Zac too! Exhaustion .. He would STTN 10 hrs at 8-14 weeks and wake starving ::)
If your gp can get the neocate quicker than a referral to a paed for meds I would sure be tempted to try it. How long have they been on their current stuff?
Yup I agree...go the road with the shortest journey. And get onto a waiting list for a pead. So if you can get neocate just try it. It can only help, or do nothing YK?
How are their poos? Zs poos were always fine - he just had reflux
Ts poos were not. He has Mspi
Re omeprazole it's not to bad to administer. t was on it from 6 wks mad I'm it's poured the granules into his mouth and washed down with a syringe of water. Lots of people have success with a bit of pear purée though ;)
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They are both constipated. Not sure if that's Gaviscon though? H has pretty much always been constipated j not so much. The reason I'm cautious about changing formula again as this would be the 6th time. They've been on the nutramigen 10days now. They can't sleep during the day now. Last wkend after changing on the thurs I had 2 fairly easy babies. Now I'm tearing my hair out although the screaming is less they can't sleep. My gp could prescribe ranitidine as they did with o. His omeprazole we gave in a syringe never thought to put granules straight in the mouth!
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Go with your gut, given so many changes I think I would stick with the nut then, give it a good month and maybe trial reflux meds ...
Yeah...I just poured the open capsule into Ts mouth because he couldn't tolerate pear ::) into side of his cheek or onto his tounge then syringed cooled boiled water slowly till they went down. Pita BUT much more effective than suspension.
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They just won't sleep in the day. Do you think that's all related? Last wkend after changing to nutramigen they'd fall asleep easily in the swing and j even randomly fell asleep on the floor! Now it's a constant battle. Apop doesn't work plus I can't spend an hr in every 3 (after nearly an hr feeding) tryin to get them to sleep. I don't know what to do?
Sara I think my gut is saying to change the formula but I feel uneasy because there's been so many. I feel like with both the pepti andnnow this we saw quite a big change quite quickly and then everything regresses. The difficulty now is them being sick which they weren't before.
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The increased sick could be in part them growing and it becoming more of advisable problem as they want more.. A bit like how often reflux doesn't show straight away too YK?
Because they aren't even 6 weeks old Hun I would put this to the specialist. Just say 'hey I know something isn't right, I'm just not sure if it's allergy related, reflux, both or something else. What is my best first step forward? - see of they can give you a plan too ie do this, wait x weeks, then do this and if that doesn't work do that. Make someone proactively be on your side to figure this all out :-*
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The only person I can see soon is a gp. I can asked to be referred to a paed but it'll be a good prob 8wk wait. I'll see what the gp says. I'm really resenting my new life.
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Hang in there babybarr. I know how you feel hun. It will get better. Tbh i would still ask to be referred even if it means the wait. You can always cancel if things get sorted.
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(((Hugs))) Laura. If your gut is telling you to switch formula I would really consider it. Wait times for referrals are long over here as well, just sucks.
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It was saying formula until I've sat watching them reflux and cry and not be able to sleep. They also stick out their tongues and really
Dribble. They've also been arching their backs and not drinking much. I don't know what to think.
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Laura I am right with you...E has been doing the tongue thing, drooling, and many more symptoms and I am thinking food intolerance is not the only issue either.
Reflux can be worse during gs right? Perhaps just bad timing with a gs and formula change...just thinking out loud really.
((((Hugs))))
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Laura at the end of the day a switch to neocate will only help...or do nothing right? It can't make them worse. So, I would honestly ask your GP for neocate and a decent dose of omeprazole and see if it nips this in the bud. If in two weeks things are much better then you know either both or one of these worked. You can then attempt to drop the omeprazole maybe after a month or swap the milk back to nutr at 6 mths.
If it's that bad we just need to pull out all the stops sometimes YK. - q is will your GP prescribe?
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They've been screaming after their feed now so more swaying towards reflux. I prob can get neocate and ranitidine via gp and I will ask about domperidone just to see what she says. Omeprazole would be via a paed I would think but again I can ask.
Just pray I can firstly get an appt with her and second she will help without too much persuasion. The hardest thing is they want to sleep on me and it's virtually impossible to comfort them both. Daddy won't en either which again indicates pain as far as I'm concerned. I should be able to organise a blood test to rule out o's other issues. Thanks for your help.
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A high dose of ranitidine could certainly help at least for now.
I'm not trying to put you off, but be aware domperidone is prescribed reluctantly to infants (here anyway) particularly young ones so your dr may suggest you try the ranitidine first, then omeprazole before giving domperidone.
If your going to do a blood test see if you can add iron count. Just to check for microscopic bleeding - you can even ask for specialised bloods which rule out EE but I can't remember them :-\
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Off to appt now. Send vibes.
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Tons of vibes - keep fighting :-*
And definitely cry if it will help :-*
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Lots of vibes xx
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Lots of vibes!
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So... dr listened and then weighed them. According to her scales (and I say that as she had them on a slightly cushioned surface so not sure how accurate) H has lost 3oz in the last 2wks and J has only put on 1.5oz. This means that she wanted to speak with paed at the hospital to sort out dosage for ranitidine. However because of the weight the paed has put them straight on omeprazole - which I'm pleased about, saves all the faffing with ranitidine and weight and then it not working as effectively. However it means I have to have them weighed twice this week before seeing the gp next Tues and if they aren't gaining we'll been seen at the hospital - and fairly quickly. We've kept the milk and gaviscon the same which I'm ok with, after all if next week there's no improvement we can perhaps consider changing the milk again. Typically though today they've not been too bad!! I don't *think* yesterday was just the 6wk gs ::) (and certainly the vomiting can't be put down to that!)
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Oh so glad things were done so quickly for you Laura! Silly babies, aren't kids always that way when you take them to the dr...mine are!
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Sorry weight gain is becoming a problem. Got to. Say though, it was only when T started to loose weight that I was listened too ::)
Fx the omeprazole starts to help in the next few days :)
Lots of hugs
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I'm pretty sure the weight isn't a prob it's just cos she put the scales on the couch which is soft and absorbs sum of the weight. I've tried weighing them myself at home and no way have they not put anything on however I'm just glad it's meant they've got the omeprazole over ranitidine. It's the suspension but can't have it till tomorrow as our chemist didn't have it in. We'll see. I've got to have them weighed wed and Fri!
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Ahh I see. Sorry missed that.
The suspension I s pretty nasty, to get it into Z I had to give a chaser of gripe water and squirt it fast into the side of his cheek!
Were they given 5mg to start with a day?
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They have the 5mg liquid but are on 2.5mls a day. They don't weigh very much still though - according to the dr H is 7lb 9oz and J 7lbs 2oz. I would say H is nearer 9lb and J probably just over 8lbs.
How long does it take to work and how should I be giving it - before milk? empty stomach? We had no proper leaflet with it... ::)
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Posted on youro other thread Hun
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I'm lost again :( these boys been on omeprazole now which I do believe is the right thing - however I'm just not convinced things are "ok" I feel like I wish I'd trusted my gut to change to neocate if they'd offer it. I do think the nutramigen is making them sick - afterall they weren't sick on the other milk :-\ I'm just confused - am I just overreacting, some babies are fussy and can't sleep right regardless??
ETA that I noticed they are congested (well you can hear a wet sound when they breathe) and the other thing is they seem to have swollen eyelids - could these be symptoms of allergy?
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Our lo sounded asthmatic when he slept. Also you could here him constantly swallowing too. :'(
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Give the meds a bit longer to work love. But yes...t had those symptoms and they were food related. :-\
If your gut says to neocate give the dr a call and ask. Maybe they will do what my surgery did and give you a can or two to trial..
The losec dose is still low... :-\ I wonder if it's too low...
Hugs Hun. Thigs got worse for both my boys between 6-16 weeks
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Sara what is the standard sort of dose? That dose I'm guessing is based on weight which uIe Dr weighed them in at 7lbs 9 and 7lbs 2 and obviously they're only a bit over 6wks old. Not reassuring to know about your boys!!! I'm seeing the health visitor in the morning so I'm going to say how I feel and what I want and take it from there. She may have more influence. Otherwise I have an appt bkd with the gp on Tuesday for a review.
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Tom was 6 weeks when put on losec 5mg a day, this is a low dose. He was approx 4 kg maybe. Ppis are not weight sensitive like h2 blockers so the range is great. There is a low, med, high and v.high for all weights but the difference between them minimal. Once both my boys were on their that dose of losec I never had to increase again. So by 9 weeks maybe T was on 20 mg the max dose for his weight which by then was maybe 6 kg. The average dose is 10mg I think. Some babies respond really well to a low dose, which is why they start low often here.
This is from the cryingoverspiltmilk.co.nz site
" Dosage and administration: Information shows that babies/children may respond to as little as 0.7mg per kilogram per day, or need as much as 3.3mg per kilogram per day. One dose does not fit all of the same weight with the same severity of reflux, and it appears to be very individual as to what dose suits each person. The important fact here is to use the best dose to suit the child. High and very high doses should be managed with the oversight of a paediatrician.
Low dose range is 0.7 – 1.5mg per kilogram per day.
High dose range is 1.5 – 3.0mg per kilogram per day.
Very high dose range is up to 3.0 – 3.3mg per kilogram per day.
The complete dosage may be taken as a single morning dose, or divided into two separate doses to be administered morning and night. It is most effective if given half an hour before a meal (1). "
So if your boys are say 3 kg (sorry not good with lbs.) then 2.5mg is still very low.
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And sorry I didn't mean to freak you out re 6-16 weeks, but I don't want you to feel disappointed if things don't get better right away - I found disappointment almost killed me :-*
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So I bkd a gp appt on Fri. The hv came Fri morn and said she couldn't believe how unsettled they were and that they seemed worse than the previous time 2wks prior. She agreed they should try neocate and called the gp ahead of my appt. So we started neocate on sat morn. Some improvement with things like both boys actually settled and slept for a couple of naps and j actually slept after the 2nd night feed although h was still sick and unsettled. However they screamed for ages after their 4pm feed today and I'm not sure why.
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Was thinkng of you yesterday..but E distracted me before I could remember to post! (Must give you a high five for managing to post with two babes!).
Hmmmm confusing how it started well and then went to pot at 4 pm! Hoping it works out and things settle down for you.
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I'm really glad your HV agreed with you that they need something more. I'm hopeful the neocate will help them Hun, it really is amazing stuff. (Though it's not perfect - huge improvement compared to beforehand here)
I found the only thing with the neocate was that it is thin so it does come back up. Though it didn't hurt t as much. Also because it stopped hurting T had more which took a while do r his body to just, hence more spilling and lots of wind ::)
Even on neocate t was Colicy. Ie 4-8 pm was just rubbish ::) xx
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Yes they've been takin more and wind seems to be a prob which I think was the issue at 4pm. Changed back to a slower teat hoping that'll help. Just can't get over this unsettledness after early morning feed both up this morning unhappy. I don't get it. Dh grumpy cos I'm now needing his help at this time too now and he has to work. Tearing my hair out. If they settled after this feed it'd make such a difference.
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Fwiw colic calm worked well for tommy during the Colicy period....
If you have have no luck with the slow teat the var flow worked well here. BUT I think that was because T was used to my fast flow bf first YK.
Hugs, I remember countless mornings BEGGING DH to stay home from work and crying after he left :'( it's so hard. Holding your hand Hun
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We tried a variflow teat before but it was way too fast. I guess cos they only btl fed they started with slow teats. Only changed up cos of changing formula which was thicker and Gaviscon kept blocking the teat. Sara how long before you noticed a difference on neocate?
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I noticed a difference in 36 hrs. But, I think t was hungry to on my breast milk because he was refusing to fed properly. So at least he wasn't hungry YK?
I think most people see improvement in 3-5 days and by 2 weeks you should see def improvement. Things weren't perfect, but t would eat, he would sleep longer than 30 mins (day and night), he had good periods of the day and stopped refluxing for the most part
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Well this morning I thought things were great. Pride comes before a fall! Both boys slept 4 a great nap j ova 2hrs and h 1hr 45 but they've pretty much spent the rest of the day crying. Plus we started early after that morning feed again. Plus the early start. It's hard enough with 1 with reflux etc let alone 2. Slowly losing the plot...
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Sending hugs hun. Hang in there. Take each day at a time.
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Thought I'd better post progress. Less vomiting - significantly so. That early morning feed has been better. Not perfect but not alternate vomiting which is good. We've had some good naps but today naps have been awful. And they just scream when tired but I guess that mayb reflux related as the bad naps? I def think that neocate has made a difference I just wish sleep would follow.
I'm wondering if the omeprazole is a high enough dose as we've had refluxing then screaming today. Also j has been refluxing then stopping breathing it's been scary. I have appt for our 6wk check on wed so these are things I'm going to bring up.
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(((Hugs))) Laura that is scary! Hopefully a dosage increase will be the final piece in the puzzle and you and those wee boys will get some good rest.
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Scary to hear about J. Do you think he is aspirating?
Glad the neocate is helping :-*
The PPI dose is low of hopefully an increase will make the world of difference.
Hugs hun
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Scary to hear about J. Do you think he is aspirating?
I think he must be, H did it today too :( It's bad, it's not just a bit of reflux which "gets caught" like when something goes the wrong way they really really struggle to breathe. Keep your fingers crossed that the GP is "allowed" to increase the dose and we don't have to wait for a referral to a paed.
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Fx Laura!
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Scary to hear about J. Do you think he is aspirating?
I think he must be, H did it today too :( It's bad, it's not just a bit of reflux which "gets caught" like when something goes the wrong way they really really struggle to breathe. Keep your fingers crossed that the GP is "allowed" to increase the dose and we don't have to wait for a referral to a paed.
I thought t was aspirating and so did our dr (who is quite up to play with reflux etc) but he wasn't, it was just rattling around the voice box and sounded like it. Fx this is the same for your boys :( keep an eye on symptoms of pneumonia just in case though x
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So the gp has doubled their dose to 5mls of omeprazole - does that sound about right Sara? They both weigh around 4.6kg. She initially seemed reluctant but after they'd been weighed and she looked it up she said that dose was well within the limits so was happy too. They've been referred to a paed and are likely to see oliver's consultant as he does allergy too. J has been really unsettledsso I'm so hoping the increase will help.
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It's very low :-\ but if it does the trick it may be all they need. All LOs are differential n how they respond.
http://www.cryingoverspiltmilk.co.nz/medicaltreatment/dosageschedule/
It may be to go higher you need a pead to monitor there.
Hugs sweetie. If J is struggling he may need a higher dose than H