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EAT => Food Allergies => Topic started by: ZacsMumme on December 17, 2012, 03:19:38 am
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I may have to trial T on it...
So it has milk protiens in it but broken down? If he is good on it does it pretty much mean my milk is bad :(
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Bb I have no idea where this goes so feel free to move ;)
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Neocate is an elemental formula and is 100% free of milk protein. It is also manufactured in a factory that is 100% free of milk protein according to the website. There are formulas out there that still contain milk protein which is broken down like you describe. We tried one called nutramigen and my son reacted terribly to this still.
If your lo does well on neocate and he is breastfed at he moment it might not necessarily be dairy that is causing issues it could be something else in your diet. If your lo is formula fed at the moment and he does well on neocate then I would assume that he has issues with dairy.
Kelly x
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My Lo had severe reflux (which you helped me get through so tnx). He was put on neocate as they thought allergys were causing the reflux. It turns out he had both reflux and allergies. He was first put on nutramagin which he did horrible on. We then went to Neocate and things got much better. He still had bad gas issues so we switched him to Elecare another elemental formula and its been a lige saver. It's not that my milk was bad, it was that no amount of diet elimination was going to work. He was too sensative to my milk and as much as it killed me he did 10 times better and was happier and that's what was most important to me. I would have lived to continue BF and mourn that I couldn't but I rather enjoy my much happier healthy baby. If you can pump and freeze to keep up your supply and do the neocate for a couple weks it might be worth it. just my 2 cents.
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Hey hon,
as you know I've also BTDT. We first tried Alimentum but M did horrible on it. Then we tried Nutramigen AA (another elemental formula) and poof everything was much much better. He's still on it today and I'm terrified of even trialling regular milk.
As Kelly explained, 'regular' hypo allergenic formula is milk-based, but the proteins have been hydrolyzed to become really small so that the body will not recognize them as milk proteins. Elemental formula is made up from scratch with no milk ingredients. It is also free of other potential allergens. Here is an explanation (for the Nutramigen AA, but the principle is the same with Neocate or any other elemental formula).
http://www.enfamil.ca/en/products/Pages/faq-56-What-is-the-difference-between-Nutramigen-AA-and-Nutramigen-A+.aspx
He was too sensative to my milk and as much as it killed me he did 10 times better and was happier and that's what was most important to me.
same here... it broke my heart to not be able to BF. I cried a lot and it took me some time to get over it. but bottom line, i had a much happier boy and that is what counts in the end.
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Sara I was just thinking about this - have you tried hypo allergenic formula already? It may be a good first step before trying elemental formula. Mostly because of the insane cost of elemental formula (unless you can get it covered by insurance?). Here we have it covered but I understand that it's not that way everywhere. Nutramigen AA that we use costs 3 x as much as Nutramigen A+.
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Oh Sara are you still having problems :-(
Neocate LCP and Nutramigen AA are 100% amino-acid based formulas. Very hard to explain but it contains no whole proteins. It is for babies with severe allergies. It's available on the NHS but very expensive for NHS (around £30 for a tin that will last 3 days) and it usually only prescribed by a paediatric dietitian or consultant paediatrician although I understand that this varies from area to area. Most will make you trial the other milks first - usually Aptamil Pepti or Nutramigen LIPIL. Nutramigen LIPIL is the most vile tasting of them all.
I have 6 sealed tins of Neocate I'm happy to post if you want them?
We trialled Alex on Neocate for 6 weeks and I did see an improvement in his reflux but TBH he absolutely hated the taste of it and screamed at every bottle and because he already has feeding and swallowing issues it just wasn't worth it for us. We found that flavouring it with golden syrup or brown sugar helped.
I know you are already on an elimination diet, can you remind me what you have excluded from your diet? Elimination diets are SO difficult and frustrating. Usually the first foods recommended for elimination are dairy, eggs, nuts, wheat and corn. This means that the diet can be quite restricted but to rice, potatoes, organic meat and veg.
EDIT - Sorry, I thought you were in the UK so I'm not sure about the difference between milks here and NZ x
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Ahh ok I didn't realise neocate was free of milk proteins not just broken down. So I have two options. (Sorry you can tell I'm clueless about formula - Kelly I'm BF and dairy free ATM)
Neocate is subsidised here $51 a can i think? Still expensive I know! I can only be given via drs etc.
So hyper allergenic formula has broken down milk proteins - I wonder if they are available via the supermarkets or prescription only? - ill have to do some research if/when T ever naps ::) :(
Stardust I'm only dairy free. TBH I just don't think I can do the whole shebang. I'm so anxious already and I just worry ill end up in a black hole all depressed and frustrated at myself when/if I get it wrong. I feel so terrible about it, but it's reality :'(
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I'm so confused, but maybe it is fully subsidised here? http://www.nutriciaclinical.co.nz/admin/documentlibrary/fundingchanges.pdf
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Here we can get hypo allergenic formula (mostly Alimentum and / or Nutramigen A+) anywhere, it doesn't require a prescription. Elemental formula does however need a prescription to get it.
TBH I just don't think I can do the whole shebang. I'm so anxious already and I just worry ill end up in a black hole all depressed and frustrated at myself when/if I get it wrong. I feel so terrible about it, but it's reality
hon I know how you feel but please don't be so hard on yourself. I felt awful too but now that I'm looking back, I KNOW I did the BEST thing for M. It may not be the 'conventional' best thing, i.e. breast milk is better for most, but for M, it was not. There was nothing I could do about that, it was not MY fault. I, like you, would not have been able to go on a strict ED. You have to think about yourself too and if you don't have energy to care for T and Z, it's not best for anyone.
Hang in there xx
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From the link you posted itdoe look like the neocate is fully subsidised now. If that is the case it might be worth going straight to neocate.
Kelly x
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Sara, I think it depends on the DHB. When E was little I had to pay $6/ can but by the time J was on it it was free. I don't know about your DHB though (but I still have this one can that I can send you if you like. IT don't know anyone else who needs it and it would be a shame to waste it when it is just so so expensive)
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:-* Jenny if your sure that would be wonderful. Ill pm you and pay for postage etc x
We get a trial from the drug company today assume its 1 tin :-\ but then I think I need the dr/ped to go through the process of 'prescribing' it...is that right Jenny?
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As far as I know here you need a prescription. Insurance in the US doesn't have to cover it as it's considered food which is ridiculous. We're fighting with our insurance company at the moment.
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Yip that's right, you need a paed to prescribe it.
If you ask here: http://www2.everybody.co.nz/forum/ubbthreads.php/forums/2/1/Allergies there will be people that can tell you about the subsidy in your DHB and probably recommend a paed too. The reflux board is also really helpful.
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Thanks :) we have a pead h Patel I think
How long would it take to see improvement on it?
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I saw improvement almost immediately when I put M on Nutramigen AA. At the time I was exclusively pumping, and I continued pumping for a week just in case, but we were able to see a difference within 2-3 days I think.
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Ok...got it :-\ I heard it tastes rank...so if T doesn't like it any tips on what I can do to make him drink it..
I just read a few places (google) suggest maple syrup, golden syrup, vanilla, icing sugar ??? Or working up the dilution (or mixing with EBM)
Jenny I have just registered on that site thanks x
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yeah I've read that too about adding sugar but tbh I was never really comfortable with it.
M liked the nutramigen AA so I didn't have to dilute it but before that with the alimentum (which he didn't tolerate well and tasted even yuckier than nutramigen aa if that's possible) I diluted it with my ebm, adding more and more every day.
good luck hon, let us know how it goes :-*
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Thanks, I'm just hoping he likes it ;) if not ill try mixing with my milk first, though wont that potentially delay improvement if my milk IS the problem?
Sigh....into wnt make him worse will it?! I don't think I can handle worse
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though wont that potentially delay improvement if my milk IS the problem?
yeah it could delay improvement. if you're pressed for time you certainly could add sugar and see if it helps. don't stress too much until he's tried it - he may like it :)
into wnt make him worse will it?!
it should not but tbh I've seen so many things go different from what 'should be' in the last year that I can't assure you it won't - but you won't know until you try it.
lots of (((hugs))) and fx he likes it and does well on it.
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Ok so he took it but only with a tiny squeeze of 100% maple syrup added...prior was refused :o Im going to try to remove it tomorrow for his first feed of the day.
Plus he took it in 2 lots ::) 1hr apart..but better than refusal.
thanks hun :-*
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I wouldn't mix EBM with it. If he doesn't drink it (which is highly likely!!) you'll have wasted your EBM!
I put a tiny drip of golden syrup on the teat. I wasn't happy doing it either, but in the grand scheme of things it wasn't many feeds.
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Thanks Jenny, this is what I did (well I had maple syrup as well so used that) hoping he takes a good feed before bed and sleeps ok ;)
I also didn't want to use my milk because I want to know ASAP if its an issues with my milk YK?
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Sorry silly question coming up ...
T had his BT feed but only drank about 2/3 of the bottle ~80/85 mls of the 120ml bottle. He Did a huge burp but still didn't want more. He was content though after the burp. Should he need more? Or is this normal for a 10wk old.... :-\ this is the earliest I've ever given a bottle age wise so no idea!
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I did not give bottles at this age either so dont't really know to be honest. If T sems content though I would not try to get him to take more for now. I hope you see improvements soon.
Kelly x
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Seems a bit on the low side but it's so hard to tell at that age. I agree with Kelly, if he was content afterwards I'd assume he's ok.
I think at that age anyway the concern is more about overall intake, rather than individual feed.
hope today goes well xx
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Omg he settled well at BT and STTN 11 hrs. Woke smilng and cooing...having morning bottle now. I hope this is a sign of things to come!
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Omg sara that's amazing! Fx for you! Xx
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I really hope it continues to go well!
Kelly x
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Thanks ladies... Quick q..
Bf to formula...what should I expect digestion and poop wise? Should he go in 24 hrs?
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I remember the ped telling me that anytime I changed something in his diet, his digestive system would slow down at first. I seem to remember going 24h without poop everytime we made a change, and then it would resume to normal after.
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but what is normal for FF ??? BF babies normal is anything from 10 times a day to once every 10 days :o but i know this isnt the case for FF
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Hmm I think normal is at least once a day. M had max 4-5 poos a day, sometimes one, it really depends.
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Just read your update - wow that is amazing!! Hope it continues (and hope it happens for us soon too!!!)
Neocate poo is completely different to normal poo!
Neocate has very little "waste" because it is amino-acid based and it is partly absorbed rather than digested. Nappies will likely be very dark green to black and pretty smelly and expect less often than when BF. Also, if there is an allergy mucous can appear in the nappy for the first 2 weeks as the body "clears out". Macy and Alex were both constipated on Neocate and needed a little Lactulose morning and night to keep them going regularly.
Also, Neocate is a very thin and watery milk. Both my babies have had projectile vomitting when on it although it didn't cause them any pain or issues with their weight - apparently the calories and nutrients in Neocate are absorbed so quickly it doesn't matter if they vomit shortly afterwards xx
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Thanks for the info Hun :-*
I've worked out he doesn't do well on avent bottles ::) takes in wind and fusses a bit. my neighbour gave me some tommy tippee closer to nature ones and he is great on them! :)
We had mucus in the poop yesterday and it looked like it was 'changing' but this am we had a runnier darker one with NO mucus! (And no discomfort before passing) silly question but how do you know if he's constipated? - poop firm OR just not pooping much?
I did notice more spills ::) though breast milk is thin too so used to spilling.
Dr visit went well....we have a 3 mth supply. We weighed him too and he has lost :'( my poor boy was probably not even absorbing my crap milk. Just dumb dumb dumb.
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Your milk is not crap.. stop punishing yourself for something completely out of your control. **hugs**
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Your milk is not crap.. stop punishing yourself for something completely out of your control. **hugs**
^^^^
be gentle on yourself hon. you're doing the best you can for him :-*
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There is nothing wrong with your milk. It is just that your sweet little boy is either intollerant/allergic to things in it. It is not your fault that this has happened. You are an amazing Mum doing the very best for her children.
Kelly x
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If he's constipated it'll be firm and formed (TMI sorry) and he'll do lots of straining, grunting and moaning and seem unsettled for a night or so before passing it. Thought you might notice more spills, doesn't matter as long as it's painless! Shame on the washing basket though!
Your milk is definitely not crap! If that's the case then my boobs are crap as I didn't manage to feed Alex at all. Our babies have special feeding needs and we are doing what's best for them. Is T getting a probitioc? I would start giving him a probiotic now that he isn't getting BM. xx
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Hi hon
Just seeing this and I have about 6 sealed tins if you're struggling with getting hold of it? I'm in the UK so no idea how long it'll take to get there or how to post? Recorded delivery? Pm of you're interested hon xx
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Thanks stardust, he's not constipated :) (yet) but I've noticed a tiny bit of mucus still and possibly a tiny bot of red (blood?) hrs less settled today but I tried for a nap in the bassinet. I think it was too flat and he was refluxing.
I HAVE started to notice more spilling now ;)
Thanks aishi, I've got a 3 mth prescription (though dr screwed up and only prescrived 2 tins so rining mon) and Jenny is sending me up a tin from down the South Island. Thank you so much for the offer though :-*
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You're welcome. I should have read the whole thread :) didn't realise doc gave prescription. Really hope it works for u guys.
And don't feel bad about ff. I wanted to bf lo1 and struggled with low supply despite trying everything for 3 weeks (dh stopped being supportive cos ds was getting poorly) so I gave up (didn't know about BW then). So with dd I just went straight to ff with no regrets and she's thriving :) it's what's best for your lo that counts :*)
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:-*
Sorry ladies, another question.
His poops were going 'neocate' poop colour but today he was less settled and then did a funny poop...little bit of mucus, back to more brown colour with fatty posits. ... He was happier after it was out, but could this just be the rubbish exiting the system?
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Hope you had a lovely Christmas and got a decent sleep. Christmas Eve Alex only woke twice which was amazing but last night he was back to hourly!! I have ordered the Ultra 30 wedge + harness and will let you know if it's worth it! Was going to go for the RESQ wedge but decided it was far too expensive!
How long has he been exclusively on Neocate now? Is he more or less unsettled? The only time I have ever heard of Neocate making a baby's allergies worse are with a corn syrup allergy, I think it's super rare though!
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it took my lo at least six weeks to have normal poops.
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Did any of you use thickeners too?
Tried a thickener and had the smelliest mucus poop ever ??? His tummy isn't 'sore' though YK?
Do thickeners do this? I have to give before feed because he can't get milk out otherwise ::)
Ingredients
Pregelatinised maize starch, maltodextrin, locust bean gum
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We had that too Sara :(
Horrible smelling mucous poo. We were using simply thick which is xanthan gum based so not even the same as you... Weird.
How is he overall?
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Won't account for the smelliness, but slime in = slime out so, it will change the consistency. It surprised me too but makes sense!
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Ahh ok, its gross!
Well he's ok....but not great ATM :-\ his tummy seems more upset again, but his reflux is better with the thickener. It's like pick the lesser evil and go with that ???
short naps are back no matter what I do and I have to ap to sleep and ap to extend ::)
DH out buying a cot today as he won't go in the bassinet and he's too big for the hammock so tonight will be interesting.
I'm going to try tummy sleeping again I think.
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How is it going?
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Hey Hun, thanks for checking in on us :-*
Thomas is looking so much healthier, he has a little tummy now :)
Ive stopped the Thickener as its giving him a sore tummy, but now he's spilly ::) I think I may use it sparingly.
We do have a bit of a problem with wind - he is hard to get it all out. We use infacol already, have gripe water and I am using a var flow teat. I guess he just has to outgrow it all. I don't see much more I can do :-\
The reflux is up and down. He is napping ok ATM, as in I can resettle. Naps all in his baby seat though ::) nights in the cot though :D
I was concerned that's wasn't drinking enough as he isn't a huge feeder, but will have a full bottle at night (great ::) ) I think he feeds better when drowsy.
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I am so glad that Thomas is looking healthier. It seems like you are heading in the right direction. My ds only accepted bottles when he was asleep when we first moved to formula. It took awhile for him to accept anymore than a few sips while he was awake. I do hope you carry on going in the right direction. It is brilliant that Thomas is sleeping in his cot at night.
Kelly x
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:-* Kelly for such a positive post. T sounds a bit like your ds in that he feeds so much better asleep. You have made my day x
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My LO was exactly the same. He ate two HUGE bottles at night but would only do a few oz at a time in the day. He out grew it after a while when his reflux got a bit better. :) all in time.
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My LO was exactly the same. He ate two HUGE bottles at night but would only do a few oz at a time in the day. He out grew it after a while when his reflux got a bit better. :) all in time.
This is us now. I think I have to let go of expecting him to feed like a non refluxer. My first had terrible reflux but fed so much during ten day (bf) that he STTN early and so I forget it an go the other way YK? With T any more than 120 mls at a time and he spills a lot, and gets quite colicky. ::)