New to Group

[Greta Dunn]

Hi everyone,
I just joined this website because my 7 year old son is severly allergic to cows milk. I live in Washington State in the US. My husband is considering a job in London and I am wondering what sort of network is out there for parents with severe food alllergic kids? What are the labeling laws in the UK? How are schools with kids with life threatening food allergies? Can they carry thier epi pens to school. Oh I have so many questions. Am I in a good place for some help? I appreciate any help!! Thank you!!

Greta
Son 7 years (ana to milk)
Daughter 5 yrs (NKA)
Daughter 9 months old. (????)

[cnc]

Hi,
Just thought I'd welcome you to the site.
I don't know the answer to many of your questions. Labelling laws- all ingredients by law have to be included on the packaging. Obviously things go wrong, but its better than it was.

Someone will know the answers to the other questions, sorry I can't help more!!

Welcome and I hope you stick around (sorry for the jumbledness of this message)

[Greta Dunn]

Thank you for replying! I guess I am not sure exactly how to find my way around on this site. If there are other replies do I need to go somewhere in particular to find them? Thanks!
Greta

[Copper]

Welcome to the site. Any replies to your questions should arrive here on this thread. I don't know the answer to the epi pen question but children here are allowed to take asthma inhalers to school so I imagine the same could be said for epi pens. I think that a member of staff would or should be trained on how to use one too.

[matt]

welcome to the site.

any replies to a specific question will appear on this topic.
for loads of other stuff go to the search area on the top of the page and type in selected words to see what we've talked about in the past.

then anything that isn't clear just ask. between us all we ted to be able to answer most questions.

by law all allergens need to be listed on food products. and to be fair thay tend to be these days.
lots of supermarkets have a free from area for safe foods.
health food shops are great sources of foods that are free of allergens.

epi pens not sure but i would expect no problem plus they would want to train a couple of members of staff on it's use. schools tend to be good with that sort of thing.

best thing to do is sit back and relax. things will be hard if you move but only as hard as it would be for anyone going that far. the dairy free thing should not be too much hassle.

hope we can help and that you'll be back regularly to the site.:)

[cnc]

Having seen the replies about epi-pens, I'm not so sure that they will train teachers to use them anymore. Theres been a reduction in what teachers are allowed to do, due to fear of litigation, and I have a feeling that the ruling may be that they can have it in school, but they've got to be self-administring.

[Pam]

Hi Greta, welcome to the site. I have a milk intolerant 7 year old daughter but fortunately she doesn't have such severe reactions if we make a mistake.

This site is probably the best UK network of milk allergic people, it has the most active message board. I'm not aware of any allergy groups in existence but of course there may be something in London. Allergy UK can put you in touch with other sufferers and recommend medical professionals who specialise in allergies. Food Matters (Foods Matter?) magazine is available by subscription only and they also provide allergy information, doctor lists etc.

Schools vary in how seriously they take an allergic condition so I would certainly recommend that you speak to staff about it before you take up a place at any school - you need to feel that you can trust the staff to look after your son. There are quite often children with severe nut allergies in schools so the chances are that most schools will already have a child who carries an epipen.

Public awareness of milk allergy in the UK is not very good generally so you do have to take responsibility yourself for the food you buy but with new labelling laws and supermarket awareness things are improving. You will however find that when eating out restaurant staff sometimes don't have a clue about milk derivatives (eg. you may be offered cheese, or cream because it isn't actually called "milk"). I often take my own food with us when we are planning to go out somewhere.

Supermarkets, health food shops and the internet are stocking an increasing range of dairy free foods so things are improving. We are fairly civilized over here so you shouldn't have too many problems.

Keep visiting us, we'd love to hear more about what is available in the USA.

[tigerlily]

Hi there,

I'm from Boston, MASS. myself but we live in Wales.

From what I've heard from a friend, who is a district nurse, there is NO PROBLEM with Epipens in schools: the staff around the child is supposed to be trained as to how to use it. Then there is the individual child's CARE PLAN in place so the staff knows what to do and when. The worst I can think of is packed lunches!

Labeling is okay (...if in doubt, leave it out...) but there is a definite lack of variety or allergy-free products in general. But mail order can make up for it. I could recommend a couple, delivered to your doorstep in 2 days.

Have a nice day!
Vanessa.

[Greta Dunn]

Wow,
Thank you all so much for your replies! I guess this is definitely a world wide problem! If we find ourselves moving I will definitely be looking for some help finding allergists and where to shop.. that kind of thing. I really really appreciate you all taking the time to write back! If we move it will be to a town called Reading. Any of you from that area?
I would also be happy to answer any questions about what is happening here in the world of food allgergies. I was just at a meeting with the head of the Food Allergy Initiative who is curently funding research to find a cure. Do any of you have any thoughts on that?
Thanks again for all the replies. I will be visiting regardless of a move!
Greta

[Caroloujo]

Hi there and welcome to the board...:)

[pinkfairy]

Hi
Welcome to the site. I know in my childs school they wouldn't except a child with a nut allergy until all the staff were trained to use the epipen. This meant that if the child had an allergic reaction the nearest member of staff could use the pen instead of waiting to look for somebody who could use it. I thought it was a good idea even although the child had to wait another week to start school.
Hello everybody. I haven't had time lately to view the site. Lots of work and visiting hospital with my mum. I am waiting for my york tests to come back. Does anybody know how long it takes?

Jane

[matt]

see what the study is about and if you think it'll help then take part. would be interesting to see how they intend to cure an allergy. would be dangerous to try and alter the bodies immune reaction, open the door to many illnesses...
reading ... used to know it PA another member will probably know it better than i can. it'll have all the regular health food shops so shouldn't be a problem.

[ellsie]

Hi there! I have friends who work in school and pre-school and they have all been trained in how to use an epi-pen. Some children here have them for nut allergy so the pen itself should not be a problem.

[Greta Dunn]

Hi everyone,
I clearly need to spend some time on this website to figure out how to use it! I am a bit slow in this department! :)
At any rate, as it turns out my family is moving to the UK very soon. We are very excited for the new adventure but also very busy! My son is severly allergic to milk. I know there are going to be many choices for him, but the transition is going to be a challenge. Do you have any sort of list of dairy free products that you use floating about anywhere? Has anyone ever heard of the brand WestSoy? Or vanilla flavored soy milk? What crackers do you find free of milk? Any pancake mixes? Any special treats? Any soy ice cream? Any milk free cheeses? Any soy yogarts? Any restaurants that you recommend? Any dairy free margarines that you recommend? Is there a way for me to research any of the past threads? Thank you so much for any help!
Also, I have a 10 month old who is avoiding all dairy, nuts and eggs. Do you have any suggestions on soy formula? Baby foods?
Do any of you have any recommendations for an allergist in the Surrey area? My husband will be working in Reading and we will be house hunting around the Ascot area in two weeks.
Thank you, thank you, thank you!!
Greta

[Copper]

You can use search to find things eg ice cream BUT you would probably get a huge number of threads or posts to read.

Most supermarkets here sell a dairy free ice cream - Swedish Glace but usually only the vanilla flavour. Other flavours can be found in a health food shop.

I use Vitalite dairy free margarine - others use Pure. These are usually in supermarkets.

Dairy free cheese is usually only in a health food shop. There are different makes and it is a case of trying them and see what you think. I like Scheese but not the cheddar version.

I am sure that others here will be able to help with your other questions.

[Greta Dunn]

Thank you! That is very helpful.

[Pam]

Tesco is probably the best supermarket to head for as they have the best range of "free from" foods, but most UK supermarkets now have limited stocks of dairy free products. Local health food shops are good for the more specialised products.

Anything made by Alpro is fine - they do milks, desserts, yoghurts (called Yofu) and are usually available in supermarkets. I think they do a vanilla flavoured soya milk and if they don't then look out for So Good who probably do one.

I haven't heard of Westsoy formula but we have Wysoy here and also Infasoy which are both soya based baby formula. Doctors are avoiding soya more and more as it can lead to intolerance to soya too, so they often use hypo-allergenic formula such as Nutramigen or Pepti which you might need to get from the chemist or even by prescription from a doctor.

Ice cream - look for Swedish Glace, Tofutti or First Glace/First Supreme.

This site http://www.goodnessdirect.co.uk/cgi-local/frameset/script/home.html will give you a good idea of what foods are suitable and you can either order online or just use the site for ideas of what to buy when you are out shopping.

When you move over here get yourself sorted out with good Broadband internet access, then you can visit here as often as you need to in order to ask questions.

Hope the move goes ok for you.

[Lou C]

Hi Greta,
Well here's a bit of a list:
Margarine: Pure spread: they have soya spread and sunflower spread both dairy free
Milks: Soya milks, Rice milks and Oat milks in most supermarkets, there is a vanilla flavoured soya milk called So Good which is in the refridgerator section of the supermarket.
Milk shakes: So Good do a chocolate one and there are also single serving cartons "Oy" soya shakes in chocolate, strawverry and banana flavours all are long life.
Formula: Wysoy (soya) or various "hypoallergenic" formulas, Nutramigen & Pepti seem to be the most common.
Ice Cream: Swedish Glace in various flavours, vanilla usually in supermarkets others usually in health food shops. They also do "cornetto" style cones and "magnum" style. Some supermarkets also do their own "free from" ice cream, Sainsburys do a caramel flavour one.
Cheeses: usually only available in health food shops but quitea few varieties.
Soya Yoghurts: Alpro, various flavours, they also do long life desserts in chocolate, caramel and vanilla flavours.
Baby Food: It's all clearly labelled, a reasonable selection.
Treats: I buy a lot from the Goodies Organix range, corn snacks, flavoured rice cakes, oat and fruit bars, biscuits (some are dairy free) Theres also a few brands of dairy free chocolate, and most supermarkets have a free from section with cake bars and biscuits.

The major supermarkets all have lists of their own brand stuff which is Milk Free they also have lists for other allergens. You will be able to find these on their websites or they will send you it by email or post.
Tescos are redoing their lists at the moment but here are the links for Sainsburys and Asda (at the moment the Asda list is "cows milk free" rather than being all animal milks) Obviously ingredients can change sometimes so the lists are justa guide, you will still need to check labels.
http://www.sainsburys.co.uk/food/specialdiets/allergiesandintolerance/allergies_and_intolerances_level3_v2.htm?WT.svl=2&WT.seg_1=nav_secondary (http://www.http://www.sainsburys.co.uk/food/specialdiets/allergiesandintolerance/allergies_and_intolerances_level3_v2.htm?WT.svl=2&WT.seg_1=nav_secondary)

http://www.asda-health.co.uk/freefrom/freefrom.html

I hope this helps, Louise x

[matt]

all bases have probably been covered by the others. no real need to worry or stress as in that area you should have no problems getting what you need from the supermarkets and health food shops.

happy travels