Soy milk/Neocate/Neocate advanced - help!
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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.
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Topic: Soy milk/Neocate/Neocate advanced - help!
Posted By: soph
Subject: Soy milk/Neocate/Neocate advanced - help!
Date Posted: 13 October 2008 at 5:43pm
Sorry long story..I been suspect my DS2 may have problem with soy for a long time and his paed specialist doesn't believe it and refusing to prescribe Neocate because he is allergic to milk but still breastfeeding. 
However two weeks ago on my requested, I asked for allergy test on soy and show up negative. So I gave in and gave DS2 soy milk for breakfast cereal as well as start to introduce afternoon drink while still breastfeeding at night and morning. Since then he has been very poor sleeper  eczema flare up very bad soon after had soy milk in the morning and afternoon and his poo is light mustard colour in paste-type and it is very stinky smell.  some nights I end up need to give him phenergan to get him to stop scratching legs as well as get him to sleep!!. As I mentioned in previous post that environmental allergens have been rule out, I was baffled till today, the pin drop today that I realise it maybe soy milk causing the problem. I have contacted his specialist to get him onto neocate or similar for 2 weeks to see if there any change without soy but just in case i end up with another "no" from her......what I can do? what is other options I can do? what other milk I can give him? can I able to buy neocate to prove her that DS2 got problem with soy? etc
Thank you 
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Replies:
Posted By: cuppatea
Date Posted: 13 October 2008 at 6:51pm
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Yes you can buy neocate but it is really expensive, I think $85 a tin and the tins are half the size of standard formula tins.
The other thing you could try is giving rice milk instead of soy, I'm not sure how old your DS is but our paed wanted Spencer to be on neocate until at least 18 months (he's not breastfed though) because the soy and rice milks aren't great subsitutes for milk for infants/toddlers. Could you see a different paed? ------------- 
 
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Posted By: 2girlsandaboy
Date Posted: 13 October 2008 at 7:05pm
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Hi Soph,
I am due to get another script of Neocate within the next few weeks. I can give you a couple of tins if you want to try it. I will e-mail you when I get it. 
Did you ever hear back from the hospital?? ------------- Tania http://www.kiwikidswithallergies.co.nz - Kiwi Kids With Allergies |
Posted By: soph
Date Posted: 13 October 2008 at 7:44pm
Yes, we are see dietician called michelle? on this friday. Will she able to prescribe me neocate instead of pead dr? I hope so.... For OP's question, my DS2 is 13months old, so look like rice milk is out of question. |
2girlsandaboy wrote:Posted By: Andie
Date Posted: 13 October 2008 at 7:52pm
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No sorry, a dietitian can't write the script, but depending on how the hospital works they may be able to advise the Paed that Neocate be prescribed, and it's the Doc who needs to apply to the MOH for a special authority number to allow you to buy Neocate at the subsidised price. And that can take time. They should be able to get it done in a day or 2 if the Doc marks it as 'urgent', but ours was and it still took weeks because someone lost the paperwork on their desk!!
I've asked a couple of chemists if we could buy any at the full price without a script (desperate situation where Ella suddenly self-weaned from breastmilk while we were on holiday, and I'd only bought enough Neocate to mix with her solids!), and they both said no, that you need a script to even order it in. ------------- Andie |
Posted By: Kellz
Date Posted: 13 October 2008 at 7:59pm
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We were licky here that one local chemist had several kids on it, and always had tins at the chemist that they would give us if the script ran out etc, then we just took the new one in when we got it. This was Pepti Jr tho, not Neocate- but still on special authority.
Hopefully u have some luck with the dietician. |
Posted By: 2girlsandaboy
Date Posted: 13 October 2008 at 8:35pm
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Im assuming that Michelle works in the same area as the dietician that we see. She organised the doc to do the script as well as the special authority. ------------- Tania http://www.kiwikidswithallergies.co.nz - Kiwi Kids With Allergies |
Posted By: soph
Date Posted: 14 October 2008 at 8:25am
Sorry had very bad migraine after my last post  That how much interrupted nights taken tolls on me dealing with him in last two week as well as last night. Hope pead dr is supportive today when she is due to reply back to my email 
Tania, I just reread his note it is Melaine, not michelle (blame migraine  )
Thanks mamas for all of your helps, I know now got ideas, may have long battle ahead...(I will remember your offer Tania if fail )
Also I have took photos of his hands and legs this morning while it is at "all calm before storm" he just had brekfast of porridge with soy milk and I can see reddish start to showing but not too bothering him yet....it was afternoon drink will put him over the edge. I will take photo this afternoon. |
Posted By: soph
Date Posted: 14 October 2008 at 10:20pm
It was bad mistake to give him soy milk for breaskfast this morning...I did end up taking him to dr because he was such in state, very distressed, won't stop scratching his legs and hands and eczema was in angry red state. I rang nurse for an advice and was told to bring him in. Dr saw his eczema and listen to me about soy and pead dr then ask lots of questions about history etc. He had prescribe stronger steriod cream as DS need it to bring it under control temporary and Dr have wrote letter to pead dr urgently to sort DS's hypoallergenic milk out asap...I feel so afterward that I broke down  at dr! 
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Posted By: soph
Date Posted: 16 October 2008 at 2:20pm
| Update, after few calls between GP and pead dr as well as few emails from me including photos of before and after. Dr surgery just contacted me that milk will be sort out tomorrow via dietician's. I can't relax till I will get script for milk on my hand, but I wondering what milk will be? neocate? |
Posted By: cuppatea
Date Posted: 16 October 2008 at 2:35pm
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That's great news. If its not neocate it might be pepti junior, however neocate make a toddler formula so it might be that one that they give you. -------------
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Posted By: 2girlsandaboy
Date Posted: 16 October 2008 at 2:35pm
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Hey Soph,
How exciting, you finally seem to be getting somewhere!! I'm not sure what the script will be for, they tried us on Pepti Junior before the Neocate but he reacted to that so the switched him onto Neocate. ------------- Tania http://www.kiwikidswithallergies.co.nz - Kiwi Kids With Allergies |
Posted By: ElfsMum
Date Posted: 16 October 2008 at 8:23pm
yeah and we couldn't even find a chemist that stocked it or would get it in either:( they generally(but not always) try people on pepti junior first... ?hope it's getting sorted for you ------------- Mum to two amazing boys! |
Posted By: soph
Date Posted: 16 October 2008 at 8:23pm
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Just email back from pead dr, she gave to my DS' dietician a script to be collect for Pepti junior (AAARRRGGGGHHHHH)
I already told her that he reacted to Pepti junior but she is off tomorrow so can't get her to change milk. Do dietician have authority to change the milk? Where this emoticons that do head-banging onto wall?? I feel like this. |
Posted By: 2girlsandaboy
Date Posted: 16 October 2008 at 8:32pm
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Oh Soph - poor you - sounds like you are having a nightmare!!
I wouldnt think that dieticians have the authority to change milk but where did you see the pead dr?? Maybe another doctor working in the same place can help you get a new script tomorrow. I have not ordered my Neocate yet but even if I order it tomorrow it wont be delivered till Monday - which does not help you over the weekend - Sorry ------------- Tania http://www.kiwikidswithallergies.co.nz - Kiwi Kids With Allergies |
Posted By: soph
Date Posted: 16 October 2008 at 8:44pm
Same hospital where a dietician is good ideas, I will try ask melanie to ask other pead dr for me, fingers and toes crosses...
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Posted By: ElfsMum
Date Posted: 17 October 2008 at 9:06am
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they can do it urgently Maya said over 24 hours if necessary ..sorry didnt read anywhere in your post that he had reaction to Pepti? why would they try him on it if he is? the script number is the same so the paed can just change it and let biolab know.. ------------- Mum to two amazing boys! |
Posted By: soph
Date Posted: 17 October 2008 at 7:32pm
Saw dietician and gave me a tin of neocate  He will try a cup of neocate tonight. My children is already got well-balanced diet but eat lots than usual amount for their ages, so I got it right then
Thank you mamas for your helps 
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Posted By: 2girlsandaboy
Date Posted: 17 October 2008 at 8:23pm
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Yeah Soph hopefully that works for you. We were at the hospital today - they told me to try DS on Soy - Bad Idea!! We have a very sick, very red little boy. Back onto Neocate
Let me know how you get on ------------- Tania http://www.kiwikidswithallergies.co.nz - Kiwi Kids With Allergies |
Posted By: ElfsMum
Date Posted: 17 October 2008 at 9:23pm
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ugh 2girls and a boy..why do the docs not know what they are talking about ..annoys me:( i think it was 25% of dairy allergy allergic to soy..it's one of the 6 food groups we have to avoid atm!!:( ------------- Mum to two amazing boys! |
Posted By: soph
Date Posted: 17 October 2008 at 9:40pm
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Oh Tania, I thought doc would skin prick test first before decide to give him soy? (but then DS' show up negative despite he did had reactions to soy anyway!!)
Hope B is ok now
DS took his first sip of Neocate Advanced and look at me in disgusted Then I remember dietician told me to add little brown sugar in to sweeter it so it is similar to breastmilk and did work. He managed just 50ml tonight...for now
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Posted By: ElfsMum
Date Posted: 17 October 2008 at 10:07pm
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what is the difference between normal and advanced? ------------- Mum to two amazing boys! |
Posted By: soph
Date Posted: 18 October 2008 at 7:21am
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neocate is for under 12months old and neocate advanced is for children over 12 months old. My ds is 13months old.
hth |
Posted By: cuppatea
Date Posted: 18 October 2008 at 8:03am
Yeah the advanced is a toddler formula, Rodney said Spencer didn't need it though cos he was obviously eating enough food already
Glad it is all sorted out soph, if you still have trouble getting him to drink it you can mix it with breastmilk and you can also add a few drops of vanilla essesnce (so long as he is ok with vanilla). -------------
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Posted By: ElfsMum
Date Posted: 18 October 2008 at 1:41pm
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ah thanks..i never knew:) ! I think E will be staying on normal Neocate too:) hehe.. ------------- Mum to two amazing boys! |
Posted By: soph
Date Posted: 28 October 2008 at 12:52am
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Thought I do update:
DS2 took his Neocate very well after first cup contain little brown sugar then next cup he took it no problem without sugar, yay! That good boy for be a easy baby! Most surprise is due to my DD's recent diagnosed to have soy, fish and wheat allergy on top of peanuts, trees nuts and egg, I find it easy to prepare meal for both of them together because of soy, so DS2 is on wheat free diet and since then his eczema has further improved and start to put on weight well. Will mention this next time to Pead Dr. |