neocate
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=15916
Printed Date: 19 April 2025 at 10:04am
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: neocate
Posted By: ElfsMum
Subject: neocate
Date Posted: 02 April 2008 at 9:41am
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i cant get into doc till 15th april..and i didnt realise it takes a week to get the script (special number) before then) ..what do i do.. biolab can give it to me 75$ a tin:( but its already 260 for the appointment:( do i find a paed and spend another 150-250 before then.. ?Marisa already gave me two tins..and dont want to scab anymore off her(unless the doc would let me get extra tins to replace the ones i used of other peoples)..and i know someone else who has offered us a tin too..what did you guys do? i assume most people dont have to wait its just bad luck that he is away on holiday (and the doc wants me to see him)
someone suggested going to the hospital and crying saying i need a signature from a paed..? and he had totally black poo last night and powerchucked(but i think that was from his first dream feed not the neocate..and all back to normal) which is lucky as noone answering the stupid helpline...*grrrr* ------------- Mum to two amazing boys! |
Replies:
Posted By: cuppatea
Date Posted: 02 April 2008 at 9:47am
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I have 6+ spare tins in the cupboard. Next months supply arrived last week and I haven't even opened them yet and I totally over ordered again. I ordered 4 tins a week and he is probably only on 2.5 tins (if that) as he only has 3-4 feeds now. So just let me know if you want to borrow some more. Just estimate how many tins Ethan is drinking per week and then tell the paed he is having one or two more a week than he is actually having. Its better to have a few extra tins sitting in the cupboard anyway.
We kept him on the normal formula and was using ezcema creams for his skin and lactulose for his constipation but then his reaction was no where near as severe so we could cope with managing it this way. I would not recommend giving normal formula to Ethan as his reaction seems a lot stronger. The other option would be to ring your gp and see what he recommends. ------------- 
 
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Posted By: Kellz
Date Posted: 02 April 2008 at 9:51am
| Ring karicare- they were able to supply us with enough to tide us over while we were waiting for the special authority number. |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 9:52am
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we went to the gp..he just said 'carry on what you are doing..i said you mean neocate..and he nodded...so that means he thinks i will be spending 75$ a tin i guess..i would rather keep him on neocate and be wrong (eg they might change him to pepti or whatever..than risk a reaction again...doc appears to agree.. well that would be great then we will borrow some off you and then replace.. even if he doesnt give us more maybe we can give you back a few at a time?
that tin you gave us(the first one) is about to be finished..so thats been since sunday 1pm.. so a tin every three days:( ------------- Mum to two amazing boys! |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 9:54am
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kellz..i tried....no reply so far. :( but i left a msg...i even rang biolab:(! ------------- Mum to two amazing boys! |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 9:57am
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oh and i asked plunket for advice... the healthline gave me the wrong advice(not really their fault though) but the plunket lady yesterday(after telling her hes allergic to cows milk protein) suggested goats milk then soy...and said oh lots of kids are allergic but we dont have any info..(even though id just seen a mag about allergies on the counter and theres not even anything in their book) and then i asked why i hadnt been informed about the second and further classes of pepe..and she said oh thats not in our control either...freaking useless...must get round to transferring somewhere else!
she also said ;its nowhere near as bad as peanut allergy'....I'm like if you dont know what you are talking about dont say anything.. :( all i wanted was some information!i went to see old mw (was going to anyway) and she had a better response 'oh sh^t' ...hehe:) ------------- Mum to two amazing boys! |
Posted By: cuppatea
Date Posted: 02 April 2008 at 9:59am
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Well the paed will probably over estimate as well then cos he put Spencer on 5 tins a week which was suppose to last 3 months and it has lasted 5 months. The paed should ask how much Ethan is having. Ours said "what is he having about 2 tins a week?" (meaning normal big tins of formula) and I said yes knowing damn well that he only got through a tin and a quarter but better to have too much than not enough.
Yeah just borrow them and pay them back as you can, not a problem. -------------
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Posted By: ElfsMum
Date Posted: 02 April 2008 at 10:07am
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sweet thankyou:) you are a lifesaver.. we would probably need another 5?i will see what the helpline says if they ever ring back (nutricia) but otherwise will come out and borrow some..do i need to wait till the paed appointment to get the disability thing signed?(like confirmation..or can regular doc do it? ------------- Mum to two amazing boys! |
Posted By: Kellz
Date Posted: 02 April 2008 at 10:10am
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I have had very unhelpful comments from professional too Kaww. It makes u scared for other people who are gonna go through this later on. Fancy saying peanut allergy is worse. A life threathening allerguy is just that- life threatening,...grrrr. Only is you youself are allergy to several things could u say which one u find harder to manage.
Im a nurse(adults tho),..it would be like saying to a person just diagnosed with Breast Cancer, 'Oh dont worry lung cancer is way worse',..WTF! |
Posted By: cuppatea
Date Posted: 02 April 2008 at 10:11am
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Nope normal gp can do it for you. -------------
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Posted By: ElfsMum
Date Posted: 02 April 2008 at 10:15am
kellz - yeah she had no freaking idea...in which case i prefer what the mw said:)i said do i need to avoid milk before i kiss him etc..or isnt it as bad as that.. she said ' oh its nowhere near as bad as a peanut allergy be thankful he doesnt have that you dont need to avoid kissing him when you have had dairy and laughed'....i didnt find it amusing.. sure it might not be that bad... but isnt it better to ask and be told that than be laughed at 
cuppatea-thanks will do that on friday when mum is here in the afternoon so i can run around and get what i need and go to winz ... can i get those tins before next thursday cause we will run out before then.. ------------- Mum to two amazing boys! |
Posted By: cuppatea
Date Posted: 02 April 2008 at 10:20am
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Yep sure thing, I need to come in to town over the weekend I could drop them of sometime for you. -------------
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Posted By: Kellz
Date Posted: 02 April 2008 at 10:34am
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It can be that bad tho. Aimeejoys Hannah has milk allergy that bad. She has got severe hives etc from Aimme touching her hours after she has handled cheese and washed her hands with soap.
Sooo grrr at that MW. Especially for making you feel stupid for asking a goos question. She just didnt have the right answers at all. I never kissed Isla after having anything containing dairy. Used sepeate boards etc for preparing her food. Good news is tho, it is very likely he will out grow it. Isla is now 17 months old and had out grown her allergy. |
Posted By: aimeejoy
Date Posted: 02 April 2008 at 10:53am
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Yep Hannahs is that bad. Still is unfortunately. Boo to your plunket nurse - tell her that you know of a child who is like that so it was a reasonable question.
We are having the same prob KA. Waiting to hear whether we need to see the paed or ifthe GP can just get it signed off. Am trying really hard to conserve the formula, but its so hard. Should ring today and see whats going on. Good luck to us both!! ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: Kellz
Date Posted: 02 April 2008 at 10:59am
| Hopefully you wont need a Paed Aimee, but cos its a standard form, and the people that sign it off dont know each case, I excect they will require the Paed signature too. |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 11:01am
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yes i am aware he may grow out of it..though he had such a reaction at 8 weeks and so quick(in 2 mins) he may not as well:( just rang Nutricia..Again...no reply..again:( aimee- yes good luck to us....so did it help not having dairy in pregnancy..i just wonder for next time for me?
not much point in having a NZ helpline that isnt answered !!:( ------------- Mum to two amazing boys! |
Posted By: Kellz
Date Posted: 02 April 2008 at 11:06am
| Isla reacted with vomitting and excema and also had severe silent reflux cos of her dairy allergy, all while fully breast fed, so exposure was only through my breast milk, not direct ezposure-she was never given formlar or anything. Once on solids, she got hives all over her mouth/ neck and instant eczema flare from licking a crust of toast that had butter on (grr at MIL), yet we were lucky enough that Isla has fully outgrown it now. I cant rememeber the stats, but I know most do outgrow by 3 years. |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 11:34am
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finally they call back..2 free tins..then a 'loan' system after that.. and green poo normal..black poo bad(could have been green hard to tell at 4am in dark!:) ------------- Mum to two amazing boys! |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 11:36am
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kellz..emma said 95% so thats good..hopefully it will happen..no wonder i was having trouble feeding..everyone tells me to just start up again but its not that simple an was a crappy experience for both of us a lot of the time..which is probably why i didnt like it and found it hard..:(
i dont like butter.. and reacted badly to milk throughout the pregnancy but had a ot of cheese but once he was born had milk in cereal and cheese... so im guessing thats what he was reacting too before the big reaction on saturday ------------- Mum to two amazing boys! |
Posted By: aimeejoy
Date Posted: 02 April 2008 at 11:48am
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I cut back significantly on dairy in third trimester, but still had the odd bit of cheese or ice cream. But as soon as she was born, it was not a drop. She didnt really have any rashes/eczema while I was feeding like Hannah did, so I guess thats something and it is delaying her exposure to it. ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 11:54am
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so what made you put her on the neocate? he has had really bad spots...which got worse during imms..but doc said just hormone spots..until they went away on formula..and the came back after the karicare stuff(long story) on saturday and then again at afterhours.. :( ------------- Mum to two amazing boys! |
Posted By: Maya
Date Posted: 02 April 2008 at 1:32pm
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I was the same as Aimee when preg/bfeeding the gremlins and they still reacted.
Tara, the Neocate lady, is brilliant, but you usually do have to leave a message for her. She's the only one that handles Neocate for the whole country so she's pretty busy, but in my experience she usually calls back within 24 hours. -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Kellz
Date Posted: 02 April 2008 at 1:44pm
| Yep I had to leave a msg too, but yeah she was fab! Glad they are gonna sort u with tins! |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 2:26pm
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her name definitely Joanna..and yep she was very helpful but was weird that i had to go through several msgs first.. the lady when i ran gto complain bout karicare she said it would be Tara or Debbie...but this lady was Australian...still she was very helpful:) ------------- Mum to two amazing boys! |
Posted By: aimeejoy
Date Posted: 02 April 2008 at 3:45pm
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I tried her on neocate cos she was a sreaming, projectile spewing mess on my breastmilk!! I had been advised not to give Greer any normal formula as she had a good chance of having allergies too, and it is best to delay their exposure. One day during the screaming phase she was heaps worse on a day that I had lots of wheat products so I started cutting that out too, but OMG - very hard! So decided to try the neocate while going wheat free as well, and expressing just in case formula made no difference. Within 2 days she was a different baby - no screaming or spilling, and she started to smile finally.
So she is obviously reacting to something in my milk and now she is a happy baby. Still a bit unsettled and grumpy, but much improved (and its only been a bit over a week and I think she is grumpy sometimes as her system is getting used to digesting formula). I'm waiting to hear back from the GP with what is happening... ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: aimeejoy
Date Posted: 02 April 2008 at 3:49pm
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I just spoke to Joanna as well and she wasn't unhelpful, but she seemed a bit bored or something!! ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: ElfsMum
Date Posted: 02 April 2008 at 4:10pm
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oh i see:( yeah noone told me the bfing issues could be something i was eating.. mind you i do think part of it was his latching issues and only feeding properly off one breast plus everything else i feel guilty about not liking feeding...:( everyone else seems too..obviously if i knew bout his allergies and anything i could have done i would have...
we just switched him to formula and for whole week he was great...sleeping well and everything.. !now back to 4-5 hours and 2-3 during the day.. they just rang back they will send two tins to the doc(freaking miles away) for me.. but i can get him to sign the disability form while Im there anyway.. ------------- Mum to two amazing boys! |