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Posted 20 May 2009 - 03:53 PM
can people please give me the names and the company info for prescription formula?
I am currently doing some allergy recipes and need to get some of these products as samples so I can trial these recipes and convert them to work under all conditions
Posted 20 May 2009 - 09:38 PM
Sorry, but what's this for? If it's for something official, you really should have been given all the details already. Many of the prescription formulas have different rules about whether you can heat them and to what temperatures etc. If it's not for something official, please don't mess around with this sort of thing, as the consequences if something goes wrong could be fatal, as not all "allergy-safe" recipes are actually safe for all allergy kids, but not all parents realise this.
I don't mean to sound b**chy, but this is not something you can mess with.
Edited by ~Karla~, 20 May 2009 - 09:39 PM.
Posted 21 May 2009 - 07:41 AM
Maybe I should have give some more information about myself. I have 2 child, 1 has sever food intolerance plus allergy to nuts. my other one is allergic to colour and latex.
I am very active in the allergy commuity providing support and knowledge for parents. This knowledge goes beyond that for parents just with children with allergies but to the commity in general.
I know that every recipe I write will not suit all parents or children. But the main idea is to provide the support and ideas for these parents. I get asked quite often what else can I do.
Before I say things I like to get all the information. I know that these formulas are the only option for many parents and would like to provide the right information, Can this recipe be do with X formula.
Posted 21 May 2009 - 10:08 AM
OK, well the two big ones are Neocate and Elecare. Both come with weaning guides with recipes you can try and contact details of where to source more information.
From someone who has 2 severely allergic children, I appreicate what you're trying to do, but I would think this is best left to the the parents to discuss with their dietitians and allergists, along with the help from the weaning guides etc for their particular formula.
I hope I don't sound too harsh (been up all night with a vomiting 17mo as he got a scrap from DS1's dinner last night, so tact probably isn't one of my strong points today), but I don't think anyone other than an allergist or specialised dietitian should be giving advice on recipes using prescription formulas. If you want a copy of the weaning guides, simply ask your paed/allergist/dietitian next time you're there for some copies or contact the companies directly yourself.
Posted 21 May 2009 - 12:05 PM
I agree with Karla, I don't mean to be harsh either....but a child that has an allergy/intolerance should be under the care of a paed/dietitian/allergist.
You can contact Elecare and Neocate and ask for their recipe books but I would be very careful in telling people that these recipes are only for Neocate/Elecare etc.
I have 2 children that have been/are allergic to CMP and we have received all the advice we needed through our paed and our dietitian.
I am extra weary though as I have been given dodgy advice my our MCHN - "just add more scoops of the neocate that will help fatten her up" - meanwhile our paed has already told me under NO circumstances to add extra scoops. Also everyone keeps telling me she is fine "she's so happy and alert" Ummmm, that doesn't mean she is all ok on the inside (sorry about that.....rant over )
I think something that would be very helpful is to be able to tell people where to get help....ie recommend names of specialists (Paeds/paediatric dietitian/ paediatric allergist) as that is one of the hardest things I have found. ie, if you want to go public go here....or if you want to private here is a list of specialists...hope that makes sense.
Posted 21 May 2009 - 12:16 PM
I think the idea of writing allergy friendly recipes is fantastic - but I wouldn't be going down the path of using prescription formulas in the recipes. Those parents that have to use them as a MAJOR food source generally don't have many cooking/preparing options for their children - and have good ideas what they can use already.
Doing recipes that use soy and or rice milk instead however would be useful and more accessable to people with other allergies that doesn't involve CMP or prescription formula. Besides, many children who are on prescription formulas can tollerate at least a little rice milk.
The other thing to consider (which PP has mentioned) is that some prescription formulas can NOT be boiled etc - so are not suitable for cooking with.
Posted 21 May 2009 - 12:50 PM
I am not writing recipes that are manly aimed at children on prescription formula. The main ideas was to let these parents know if the recipe could be altered to suit their needs provided that the rest of the ingredients could be tolerated. things like a white sauce that could be altered to fit a wider group.
I also provide advice on where to get ingredients from. We live in Tassie and Medical help is quite often limited. We have only one private allergy tester, and the only allergy dietitan will only see inpatients at the royal. So only a few get all the help that they need. I also know now that doctor do not what babies placed on Soy formula anymore so limting option when it comes to weaning. So understand the requirements of these formulas help me understand better what the parents are going though.
I have not meant to upset people or replace medical advice. Just to provide recipe options to parents that may have not thought about it or have the cooking skill to make up recipes on their own.
Posted 21 May 2009 - 08:35 PM
tesan - i think it sounds like a great idea! My DD was on Neocate and the advice I got from her paed, dietitian and allergist was to try and incorporate the formula into as much cooking as I could. Initially all i was told was to "be creative". It wasn't until 6 months later someone on EB mentioned a weaning guide and I managed to wrangle one out of one of DD's specialists. But even then, i was given the book and told to make the rest up myself!!
Despite living in a capital city (Brisbane) there have been times when I've been desperate for help or advice... just someone to make some suggestions about how I could use it to feed my daughter... That's basically why I love this section of EB - because I can look through the recipe posts and advice given by other parents and get some ideas. Even the recipes that aren't 100% suitable for MY DD's allergies have often been helpful because they've sparked my enthusiasm to try something new again (albeit with any necessary modifications). And as Tarshy77 said, recipes using rice milk are great too. Some of the allergy cookbooks just say to use a "milk alternative - rice milk, soy milk, prescription formula, etc".
Provided you're not saying that your recipes will suit all people with allergies (and it sounds like you're not) I don't see it as being any different to sharing my own recipes on EB. I'm not a dietitian, paed or allergist. I'm just a Mum who hopes I might be able to help someone else out with the difficulty of thinking of something to cook for their kids...
p.s. there are recipes available on the Australian neocate website. Click on the 'parents' tab and the 'cooking with neocate' link. Perhaps you can direct parents directly to this website for some advice and suggestions about how to use the formula in cooking (oh, and there is a white sauce recipe there from memory).
p.p.s. Karla & OneMore? - which formula shouldn't be boiled? DD's dietitian told me to use her Neocate in cooking like I would normal cows milk. Some of the recipes the dietitian actually praised me on were ones that involved boiling the formula (e.g., tuna mornay) and some of the recipes in the weaning guide (like the fritters) say to fry until bubbles appear. I throw Neocate powder in everything because that's the advice I've been given. What harm does boiling the formula do? Just interested to know now.
Edited by simple, 21 May 2009 - 08:49 PM.
Posted 21 May 2009 - 11:06 PM
simple - the dietician I just saw worked for neocate when it was brought into oz and is still heavily involved in it. I can PM her contact details if you like and you could call her over the phone or via email. She said NEVER cook with neocate. Do not boil or cook it like cows milk. Always add the scoops at the end when the food is ready to serve and just mix it in with a spoon. She said cooking with it destroys the nurtients? and also alters the taste of it. She could explain in better than I could. If you would like her contact details PM me
OP - I am with the others I think it's very thoughtful of you to do that but the children who are on these formulas can call the companies or look on the web of neocate etc and get the recipes and print them off. the neocate booklet has a white sauce in it I wouldn't mess with the prescription formulas. I agree with tarshy - it would be good for you to do it with say rice milk - otherwise you could leave yourself open to litigation giving out wrong advice if a child was the have an adverse reaction and more importantly the fact a child might react thank you for thinking of those with allergies though
Posted 22 May 2009 - 07:38 AM
Thank you every one help. I have decide the major of you do not want help and now will spend my time helping other people who want my help. I know I will be cutting out a group in the community, Leaving these children open to the risk of be isolated from society as I now not explain this to parents of children and school teachers who do not have these problems what can be offer instead.
BTW I had full indentation of working with the manufactures of these products to ensure that all recipes met the requirements for the formula.
Edited by tesan, 22 May 2009 - 08:14 AM.
Posted 22 May 2009 - 07:50 AM
Tesan, it is a nice idea, but I am curious to know what qualifications you have to be giving this advice? I know that "been there, done that" experience is gold, but shouldnt it be guided by a pead/allergist/dietician??
Posted 22 May 2009 - 08:16 AM
tesan - No-one said they didn't want your help. In fact, we all praised what a wonderful thoughtful idea it was. But the fact remains that with severely allergic children, only people qualified should give out advice. I will come back on later and give you the manufacturer's details for both Neocate and Elecare (have to dig out my weaning guides). Neither formula should be boiled or "cooked with" as such. Neocate can be added to food after it has been cooked/boiled, Elecare should only be added just before serving. There are many extra rules when using prescription formula in food (cannot reheat/save for later, must be thrown out within 1 hour etc). If you contact the manufacturers, they may send you out some Weaning guides for you to read and photocopy and that way you can hand out "official recipes" only. You cannot use many of the Neocate recipes with Elecare instead, so you'll have to make sure you only give the right handouts to people on that particular formula.
Oh, and you should never recommend recipes that have prescription formulas to anyone not using that formula. They are not something to be used unless there is a medical need. Oh, and children not on the formula should not be given it, just so the one recipe can suit many kids.
Simple - Neocate should not be boiled, and Elecare should not even be heated (can be warmed slightly, but not heated IYGWIM?)
I have two 17mo's who still cannot eat ANY solids and react to traces of food (eg, they get sick if you don't wash your hands with soap and water after eating), so I'm very precious about this sort of thing, and the wrong "advice" could end with serious complications.
Posted 22 May 2009 - 08:20 AM
I do not replace the pead/allergist/dietician. I help with cooking I have 30 years of cooking knowledge plus the understand how the systems of playgroup and childcare work. I do a lot of education of people who would like to understand more but do not have a child inflected themselves.
I am currently working closely with one centre and providing information on how to make the centre more allergy friendly.
Posted 22 May 2009 - 09:03 AM
OK, you cannot give food containing prescription formula to any child that it has not been prescribed for. So if you were thinking you could provide recipes for the daycare centre to use, you can't.
In terms of allergy-friendly recipes for a childcare centre, you need to source them elsewhere, as you cannot use a recipe involving a prescription formula and not include the formula (does that make sense what I'm saying?). I'm not sure where to look for recipes like this, as my twins are not tolerating ANY food at all.
Posted 22 May 2009 - 09:35 AM
I was never going to give out prescription formula and the information for recipes was only going to be given to parents who ask for it. so only to parents already using that product. as it is easier for my to add this information to the database at the time of writing the recipe and printing it out for those parents only.
one centre wanted to go nut free, in the end it was not possibly for them after speaking to me they developed the understand that no nut product could be brought of to the premises not just the child care room and all products in the child care room would have to be checked to nut content this included all craft supplies.
I have also worked in the confectionery industry for 5 years and understand how manufactures works and how to get answers to questions they do not answer to the general public.
I am currently writing recipes that are nut, dairy, gluten, salaticye, amines, egg, soy free and also low protein.
Posted 22 May 2009 - 10:07 AM
OK, I'm a bit confused. Are you wanting the recipes for daycare centres or for parents who have children already on prescription formula? If it's just for the parents, simply tell them to contact the manufactures or see their specialist, who should have copies of the weaning guides.
As for being nut free, and I do not understand why you say that is impossible. There are plenty of nut free centres.
TBH, I think you're better at sticking with just writing the low-allergen recipes, and leave the prescription formula stuff to the experts. But it was a great idea!
Posted 22 May 2009 - 12:54 PM
First off, thanks everyone for all of the info. And yes, I'll be PMing you for more!!
Okay, slightly off the original topic now, but I'm seriously confused. DDs allergist, dietitian and paed have all told me to COOK with neocate. So if you shouldn't cook with it (and from what I've just read in this thread, I shouldn't be) then even the specialists don't know what they are talking about. May not be surprising, actually.
However, can someone explain why the Neocate recipes (from the official neocate website) involve cooking Neocate if it shouldn't be done??? There are heaps of examples there: the fritter and pancake recipes involve frying a batter made from neocate (until the mixture bubbles), biscuits are baked in a moderate oven for 20mins and the self-saucing Neocate choc pudding is baked at 180 degrees for 60 minutes! I assure you, the sauce comes out boiling.
I've just searched around the neocate website and it mentions that exposing Neocate to extreme heat can alter it's taste and reduce vitamins but it doesn't sound like it turns it bad (i.e., makes it toxic or anything). I agree that our kids need to get enough vitamins and minerals to remain healthy so it's important to follow product recommendations. But after checking out the website surely it must be okay to cook with Neocate (even at high temps). you just have to be aware that you child may not be getting ALL the essential nutrients they need if they only eat food prepared this way. Obviously they still need to DRINK neocate and eat foods prepared at lower temps too.
2 years into this and I still don't know what I'm doing. I just wish the info about managing my daughter's allergies could be a little less contradictory at times. I take my hat off to all the parents who have been doing this for much longer, and managing many different allergies at the same time. It must drive you all a little bonkers sometimes.
Thanks again for the info,
Posted 22 May 2009 - 01:35 PM
simple - the Neocate weaning guide I have says
"If necessary, Neocate formula may be heated gently, but DO NOT boil or microwave at high temperatures."
but you're right - the pancake recipe does say to add the Neocate and then cook the pancakes.
I think it's to do with the changes in taste and that heating it does destroy some of the nutrients. Maybe because they assume the child is going to be getting the majority of their Neocate requirements through other means (drinking it or through other foods not so cooked etc), so then it's OK to give them some cooked formula sometimes? (Did that even make sense?) Also, maybe because your child is a bit older, it's OK?
I know Elecare has much stricter rules on heat. Sadly, we haven't reached the "anything other than formula" stage yet, so I haven't asked about all the finer details like this. The Elecare weaning guide says
"Q. Can I cook with Elecare?
A. No, you should not cook with Elecare as the heat may destroy some of the nutrients, cause changes to the product that may affect your child's tolerance to the formula, and affect taste.........."
The bit about affecting the child's tolerance worries me, and Elecare and Neocate aren't that dissimilar. Maybe contact Nutricia about it either through their website or ring the customer number on the tin and see what they say directly....
tesan - Nutricia make Neocate and Abbot make Elecare. I think the best thing for you to do is to contact them directly, explain what you want and I'm sure they'll give you all the information they can.
Edited by ~Karla~, 22 May 2009 - 01:36 PM.
Posted 22 May 2009 - 02:16 PM
Thankyou Karla!! My weaning guide doesn't say that. Must be an old version or something.
I'm beginning to think the DO NOT BOIL bit refers to when you mix up the powder with water in order to offer formula feeds. It must mean do not boil made up formula or add the powder to boiling water when offering your child Neocate from a bottle/cup. BEcause doing so can alter the taste and destroy nutrients, which you definitely don't want when it comes to your child's main source of nourishment. Makes sense to me. I'd never do that anyway.
And I have tried calling the nutricia care line for clarification but couldn't get through. Left a message. Will let you know what I find out.
Good grief. Elecare sounds even more complicated if you can't cook with it AT ALL.
Posted 22 May 2009 - 02:28 PM
simple - Just to clarify, that quote from the Neocate weaning guide is in the bit about "Adding Neocate to food: Older Infants". But mine is an old weaning guide (with pics of the old tins), so maybe yours is newer? And if so, probably more relevant? Good luck! Let us know what Nutricia say when they get back to you....
Posted 22 May 2009 - 05:54 PM
Nutricia called me back. Spoke to a lovely person on the phone. I was told that exposing neocate to high temps is an issue primarily when your little one is receiving the formula as their primary source of food. So no boiling made-up formula before giving it in a bottle and no adding Neocate powder to just boiled water (it should be cooled first). When it comes to cooking I was told that heating does change the taste a little so they recommend adding it at the end of the early weaning recipes so your baby still stays used to the taste. Heating also destroys some nutrients, but that's to be expected and the formula has actually been adjusted slightly to take this into account (she said that Vitamin C is particularly vulnerable to heat so there is more in the powder than needed to account for some loss through heating). She said all the official neocate recipes have been tested and deemed perfectly fine, so using these as a guide is a great idea. This includes baking the formula for long periods, frying, etc. I gave her some examples of what I've been doing and her response was "excellent". So, according to the rep I just spoke to, it's perfectly okay to cook with neocate. Just make sure your child is still getting enough formula or nutrients from other food sources.
Edited by simple, 22 May 2009 - 05:55 PM.
Posted 22 May 2009 - 07:41 PM
Thanks for that simple! I don't use Neocate (my boys are actually allergic to it!), but I'm sure others will find that useful. I did wonder if the warnings are there because it destroyed some nutrients, but as long as your child was still drinking some (or at least having some through other foods that is not exposed to high temps), there would be enough nutrients overall in their daily intake.
Posted 22 May 2009 - 08:40 PM
thanks for clarifying that simple. Its so confusing. I will email the dietician I used about it too.
Posted 23 May 2009 - 12:19 PM
No worries. If anyone else wants to speak to the manufacturer, I just went to the 'contacts' page on the Neocate website, phoned Nutricia Australia and was put through to the Customer Care line (or was it Clinical Care line)? Something that started with 'C'!! I'll blame baby brain for the memory lapse
Best of luck with it all,
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