Dairy Free Baby and Me: Living with Cow's Milk Allergy - how I try to keep the 'Dairy Free Baby' milk free!

Until fairly recently, I was pretty blase about 'Baby' starting school. I've taught in school for years. I've come across the odd one or two children with food allergies and nothing untoward happened on my watch.

Last September, I was more worried about 'Baby' making friends than her milk allergy. 'Baby's' prospective school appeared to be so sewn up. They had a number of children with allergies and seemed to have all the right procedures in place. Unhappily, recent experience suggests otherwise! It seems to me that they understood the importance of an immediate reaction i.e. anaphylaxis, but not a delayed or Non-Ige mediated reaction. In fact, too few people are aware of the effects of cow's milk on Non-Ige sufferers, or of the importance of preventing exposure. I kind of blogged about it a short while ago. The link for that post is here.

I now feel that I should have taken nothing for granted, with school, but should have spelled out things right from the beginning. Better safe than sorry, and all that! You'd think, having been a teacher, that I would have known what to say/do, however, on our first encounters with the teacher, suddenly on 'the other side of the fence' as a parent, I was massively under prepared! So, I clammed up and couldn't think what it was that I needed to convey in detail. Doh!

Hindsight, based on sorry experience is a wonderful thing! It definitely sharpens your focus!!

Here's some of the things that I would have said... if I only I'd had the benefit of hindsight:

Some Background:

A lot of people seem to assume that food allergy is all about anaphylaxis - an immediate matter of life and death. That's the one, that if people are going to take food allergy seriously (and not get all dismissive) they take note. However, food allergy is not all about anaphylaxis. My daughter has a milk allergy, but is not anaphylactic. She has a Non-Ige mediated milk allergy - meaning that it won't cause a reaction that could kill her. Instead she will suffer a delayed reaction if she ingests milk, or any products made with milk.

Unfortunately, when most people grasp the fact that my daughter is not anaphylactic, they switch off and go, 'PHEW!' They might confuse it with lactose intolerance, or think to themselves, 'Oh well, that's alright then. I'm sure a little bit can't hurt!' They don't say it to my face of course, otherwise I'd put them right with a thing or two!! But it does come across in their attitude - the way they deal with it!

However, although my little girl's reactions won't kill her, they are not pleasant, and it's not nice seeing her suffer. Therefore we try to do our level best to avoid them!

Non-Ige reactions vary from person to person. In my daughter, a delayed reaction may include the following:

severe tummy cramps (they make her cry out in pain)
diarrhea
continued exposure to milk (including traces) will damage her gut, which will then struggle to absorb nutrients from her food. This could cause her to become malnourished. Nothing much can be done about the gut damage - you just have to let it run its course and wait for it to heal. It can take the gut quite a long time to heal following an exposure to milk - when she was little, we were told to leave three or four months between planned exposures to milk (otherwise known as 'milk challenges') which were meant to help assess her progress
once the gut has been damaged by milk it will take a while to heal, whilst sore, it may be irritated by foods with which it would normally be okay (this might depend on how much damage was caused), thereby causing similar symptoms to her milk allergy

Please be aware that allergic reactions can be worse if you're under the weather or following exercise (or, if you're an adult, alcohol and fluctuating hormones can also cause reactions to be more severe).

The threshold amount of milk that is required to cause a reaction will vary from person to person. My daughter has been sensitive to the minutest traces of milk, including milk that has been broken down by processing or baking. At one point, I couldn't even sit in a cafe to drink my coffee, without her reacting with a tummy ache later (that's even when I kept her strapped in her pushchair so she couldn't touch a thing, because I initially thought she must have been picking up traces of milk by touching unclean tables etc.)! It appeared that she could be reacting to milk aerosolised whilst it was being steamed for cappuccinos etc. If I went in and collected a take away coffee, she was fine, but if I stayed inside and lingered over my coffee, she wasn't. She also appeared to react to cheese being melted in a sandwich toaster at home. I believe that this kind of reaction is thought to be quite rare.

It is hoped that at some stage my daughter will begin to outgrow her milk allergy. During the process of outgrowing her allergy, her threshold amount will change, until the point where (we hope) she can tolerate milk fully. We are unsure what her current threshold might be, as we have not had the opportunity to reassess this in over a year - due to our comings and going over our flat move and periods of illness, which disrupted our planned milk challenges.

Until such time as we can assess her progress once more, we must assume that my daughter continues to remain sensitive to the tiniest amount of milk. Because she has been so sensitive, you may think I'm overdoing it and maybe OCD, but these are the things we do to try and keep her safe at home:

(Please note: Not everyone with a milk allergy will need to go to these lengths in order to keep safe. These are the rules that I have developed for ourselves, over time, in the light of our personal experience of our daughter's milk allergy. As a result, it is rare for her to experience a problem at home. Out and about and catered for by others... well that is when it can and sometimes does go wrong - even when we think we've been careful to communicate with them regarding her needs!)

1. Golden Rule:

My daughter is never knowingly brought into contact with any products made with any mammals milk (cow, goat, sheep etc.). This includes products which state that they may contain milk, are made in the same factory as products made with milk or are not suitable for milk allergies. These products do not have to be food products they could (for example) be craft, cosmetic or cleaning fluids.

We do not accept products with 'may contain' type statements because they're too woolly and we've no idea, in practice, what that might mean. The only exceptions to this rule are 'may contain' products that we have discovered are safe (by happy accident), or any planned milk challenges (by which she is carefully exposed to milk, to see if she's outgrown her milk allergy).

Common milk products include:

milk
cheese
butter
yogurt
cream
ice cream
buttermilk
sour cream
fromage frais
lactose
whey
casein
milk powder
quark

Products containing milk could include the following:

margarine
chocolate
cake
biscuits
sauces
pre-prepared sandwiches

In fact I could go on! It's in many processed foods - you'll even find it in some sausages, ready made Spaghetti Bolognese, chicken gravy, wine, and yes, even jam!!

2. Keeping clean:

Milk can get everywhere! My daughter may not react to milk on her skin, (although she has had rashes on her face from kisses, in the past) but if she touches something containing milk and then forgets to wash her hands before eating, or absently puts her fingers in her mouth, she may ingest enough milk to cause a reaction.

This actually happened at one stay and play venue, where children were given sticky cakes and were then allowed to go back to playing with the toys with sticky fingers. My daughter kept getting tummy aches an hour or so after each visit. It went on for a number of weeks, before I noticed the pattern. Once I cottoned onto this, and cleaned her fingers before she ate any food herself and after we got home from these visits, the tummy aches stopped.

Milk proteins cannot be killed with disinfectant (like bacteria), and are sticky so need to be washed off thoroughly. If not cleared up properly milk proteins remain on surfaces, even if they are too small to be seen. This is a particular problem if the surface is absorbent (e.g. carpet).

So to avoid any chance of accidentally ingesting small traces of milk, I now treat milk protein as a bio-hazard. I try to keep milk trace free by:

washing hands after handling milk - e.g. pouring milk from a milk carton, wiping up a spill, handling food made with milk, such as a cake/sandwich etc.
using hand wipes, to thoroughly clean hands, if we are out and about, and where water and soap is not available. Alcohol gels are useless, as alcohol cannot kill milk proteins.
washing both our hands when we get home after being out and about.
washing my hands if I have had any contact with milk (e.g. in food or drink) prior to holding my daughter's hand or touching anything else she might pick up/touch.
cleaning up all milk spillages immediately and thoroughly. Mug rings from tea or coffee that has been made with milk on tables and other surfaces are a particular bug bear of mine, as people are inclined to forget that they contain milk.
cleaning up spills by first blotting the spillage with a dry kitchen roll (the less milk being wiped around the better). I then clean the area of the spillage, using disposable materials, such as kitchen roll with hot soapy water. I think disposable is best, as milk proteins might remain 'caught' in the fibres of dishcloths.
cleaning tables (and chairs if necessary) in cafes/restaurants/trains/planes etc. with my own wipes, as soon as we sit down and before my daughter can touch the table. I clean the edges of tables too (little children often grab the edges of tables) and keep cleaning until my wipes come up clean (I once got through an entire pack of hand wipes when cleaning a table in Starbucks)!
taking my own crayons/comics/entertainment for my daughter in cafes/restaurants, as it can't be guaranteed that other children who have handled the ones in the cafe/restaurant had clean (completely milk free) hands when they did so!
using a dishwasher to clean crockery/utensils etc. as it is an excellent way of making sure items are cleaned thoroughly. I just have to make sure that no residues of food remain at the end of the cycle. Anything not properly clean is returned to the dishwasher for another cycle, until it comes up clean. Anything that looks troublesome is soaked well first, and then wiped with a disposable cloth.
carefully washing up all utensils for food that are intended to be kept dairy free first, I then wash up anything else, or use a fresh bowl of water and use a separate brush/sponge just for dairy free utensils.

They say, 'Don't cry over spilled milk'... I may beg to differ!

3. Food Preparation:

When preparing food, there is quite a lot of potential for accidental contamination of dairy free food, with traces of milk or milk products, therefore I:

wash hands thoroughly before preparing dairy free food.
wash hands after handling milk (e.g. pouring milk from a milk bottle, wiping up a spill) or after handling food made with milk, such as a cake/sandwich etc.
ensure the surface area is clean prior to food preparation - to ensure no traces of dairy remain.
use clean separate utensils when preparing dairy free food.
use clean separate wooden spoons/spatulas for dairy free food, when cooking.
use clean separate baking trays when baking or line them carefully with foil - to ensure no residues of dairy free fats could transfer onto dairy free food (unfortunately, I've found washing does not always remove all traces of dairy fats/grease - we've reacted to food cooked in other peoples' cake tins).
prepare dairy free food first, or be aware that saucepans cooking on the same hob may need covering with lids to prevent food containing dairy spluttering and transferring to any dairy free food in the vicinity (thanks to What Allergy for this tip).
don't prepare dairy free food using electrical appliances such as sandwich makers/waffle machines that have been previously used for food containing dairy, as they cannot be immersed in water and cleaned thoroughly (this has been learned through experience)

4. Food Storage/handling:

Some people will keep 'safe' food in separate cupboards or on separate shelves of the fridge. I don't, because I'm particular in the way I handle milk - washing my hands and surfaces frequently, and I'm usually the one who handles the food in our home. In kitchens used by others, this further precaution may be advisable. When handling or storing food, I:

wash my hands thoroughly before handling food.
keep milk products in sealed containers.
cover all dairy free food with cling film or store in clean sealed labelled containers.
use separate utensils for serving food eg. cake tongs, serving spoons etc.
only put clean knives/spoons into jam/pickle jars etc. better still, use a jam spoon - especially when others unused to dealing with milk allergy are around
don't put dairy free food (such as cakes/biscuits etc.) on the same plate/tray as food containing dairy.
avoid passing food containing dairy over dairy free food, to avoid contamination via accidental spillage.
avoid serving food made with dairy right next to dairy free food, especially if it is likely to splash around e.g. cheese sauce/chocolate sauce/custard/yogurt).
am careful to make sure that when I'm pouring milk from a bottle it doesn't splash over surrounding surfaces/food. If it does, I clean it up as soon as possible.
wear a clean apron to protect clothing, or remove clothing that has been splashed with milk or sauces containing milk - in case my daughter moves in for cuddles.

Sloppy stuff like yogurt served next to this fruit compote made the compote a 'no no' in case splashes of yogurt had accidentally made their way in to the compote.

5. Other potential sources of milk:

Milk doesn't just appear in food! Where milk appears in other products, it does not have to be highlighted in the same way that it is in food. This means that you really have to keep your eyes open! So, I also check labels on the following:

some washing up/cleaning products which may be made with milk (yes, really).
some hand soaps.
chalks, playdough and other craft materials also need to be checked carefully in case they're made with milk.

This particular Ecover washing-up liquid is milk free - the Chamomile & Marigold (also by Ecover) isn't - it contains whey, one of the proteins found in milk!

Furthermore:

My daughter is quite articulate for her age but is still quite young. Although she knows that she is dairy free and that she requires dairy free food, it's not entirely clear how well she understands what this might mean in practice.

Therefore, it cannot be assumed:

that she really knows what she can/can't eat - she may say food is okay that she is not supposed to have, either because she doesn't realise or because she likes the look of that food, or perhaps because it appears more appealing. If any adult dealing with her is not entirely sure whether she can have something, I would rather she were not given the benefit of the doubt. I would rather she was told that Mummy will be asked first, and then she can have whatever it in question, later (after it has been approved by Mummy), or on the next occasion it becomes available.
she knows/understands the need to keep her hands clean (although I keep trying to drum this one in at home). She may not realise that she has touched something that contains milk and that therefore some might remain on her hands and needs to be washed off. She may need to have this explained to her and be instructed to wash her hands. Being a bit of a feisty minx, and not keen on washing her hands, she may be reluctant to do so!!

Platinum Rule, (to top my previous 'Golden Rule'):

If in doubt, leave it out!

Addendum:
The above list has ruled our lives for a while now. Having written it down, it's suddenly hit me how many rules we've felt forced to follow. Living with it, I take it all for granted and it's become second nature. However, changes are afoot, which could bring an end to some of this, so maybe I won't show it to the teachers just yet. More to follow soon...

However, I will definitely point them in the direction of Allergy Adventures new online workshops, which have been created especially for school. They are completely free and are accompanied by short punchy videos. Check them out here!