Archive for January, 2006

Anaphylaxis and Food Allergy Forum

So you need some support by talking with others like you, it’s hard to find these groups by searching in the search engines.

So I’ve put this quick list together of other forums that I’ve found online that are available…

Personally I believe that a forum that discusses topics of this nature should not be PAID, but free information for all.

http://kidswithfoodallergies.org/groupee/forums
A huge forum with everything in it. Was free, now a paid forum.

http://forums.about.com/n/pfx/forum.aspx?nav=start&lgnF=y&webtag=ab-allergies
A lot of different information in here.

http://peanutallergy.com
Another huge forum that’s been around for ages.

http://allergysmart.net/forums
What the heck why not start our own forum that is dedicated to anaphylaxis and food allergies. It’s free and always will be.

If you know of others please comment and let me know.

Aaron

Children’s food allergies ‘can cause lasting trauma’

This article was so good I’ve included the whole lot. Those with anaphylaxis would fall into the overcontrolled group, simply because they have to.

I’ll be keeping tabs on this study, since we have always feared that long term physcological damage is a very real threat for children with food allergies, especially anaphylaxis.

We try so very hard to be inclusive for our kids, but you just can’t do it 100%, because it just puts the kids at to much risk for ending up in hospital emergency ward.

Children with food allergies can grow up feeling abnormal or be afraid of eating, research has found.

And their parents often feel isolated and frustrated that the condition is not properly understood by politicians, the public or even their GPs, according to the multi-million euro study at University College Cork.

The ground-breaking research, part of a pan-European investigation, has been examining how quality of life for the 20,000 children in Ireland with food allergies can be improved.

There has been an overwhelming response from families keen to discuss the previously-overlooked psychological and emotional implications of the potentially life-threatening condition.

Their experiences will be invaluable in helping others, researchers believe.

Research associate Audrey Dunn Galvin has found parents have a wide range of concerns and problems they have had to confront as a result of their childrens conditions.

For three-year-olds they tend to fall into two groups some tend to be over-controlled, more grown-up than they should be.

Others try to resist and will try to push the boundaries, for example try and eat that bit of chocolate, she said.

She said children who previously had reactions tended to be very controlled, going out of their way to avoid their problem foods, while those who have rarely or never suffered from anaphylaxis extreme allergic reaction did not appreciate the seriousness of the condition.

Its a very fine line between terrifying the poor child and normalising life for the child as much as possible, she said.

She said she had met parents who were doing everything right, but did not realise their child did not feel normal.

As children get older, the parents become much more worried about the risks, for example, eating out or at birthday parties, while it becomes harder for the sufferers, who are often faced with boring or restricted diets.

They tend to be smaller, and face food with fear, and sometimes its hard to get them to the table.

The psychological consequences havent been looked at all, she said.

The quality of life issues were not restricted to the children, but affected parents, who might suffer from extremely high stress levels as a result of the concerns they had and the lack of support.

There is the frustration parents feel with other people not appreciating the seriousness of this.

They feel government doesnt understand and, to be perfectly honest, they feel that GPs dont understand.

A very important thing is to raise awareness among ordinary people in the street and also among politicians on how important labelling and manufacturing and the traceability of food are, she said.

A series of focus groups were originally designed for parents with allergic children up to the age of eight, but such was the interest in the programme that it was extended to 12 years old, with separate discussions with the children planned after Christmas.

Ms Dunn Galvin is attempting to draw up a questionnaire, based on the focus groups, which will then be used to identify and address quality of life issues.

The research, which is lead by Professor John OHourihane at the universitys Department of Paediatrics, is part of a four-year, 15m European study being undertaken to assess the impact of allergies on peoples lives.

Food Labelling can be deceiving

For those that haven’t seen this yet there are many scientific names for common food allergens.

I have to carry a list with me in my wallet so that I can remember them when I check labels for my kids that have anaphylaxis.

Don’t get caught out, and make sure you check for these ingredients regardless of if your country has labelling laws in place.

WHAT’S IN A NAME?

Before the new law, food labels could read like a chemistry book. Check out a few names that indicate the presence of milk, eggs, soy, wheat or peanuts in a product.

Milk

Lactoferrin; Lactalbumin; Lactalbumin phosphate; Nisin; Rennet casein; Whey; Ghee

May indicate the presence of milk protein

Luncheon meat, hot dogs, sausages; Non-dairy products; Caramel candies; High protein flour; Lactose; Flavorings (including natural and artificial)

Eggs

Albumin (also spelled albumen); Lysozyme; Meringue

May indicate the presence of egg protein

Lecithin; Marzipan; Marshmallows; Nougat; Surimi; Flavorings (including natural and artificial)

Wheat

Kamut (relative of wheat); Durum; Farina; Spelt; Vital gluten; Seitan; Bulgur; Semolina

May indicate the presence of wheat protein

Hydrolyzed protein; Starch (gelatinized starch, vegetable starch, modified starch); Surimi; Soy sauce; Flavorings (including natural and artificial)

Soy

Edamame; Miso; Natto; Shoyu sauce; Tamari; Tempeh

May indicate the presence of soy protein

Vegetable broth; Vegetable starch; Vegetable gum; Flavorings (including natural and artificial)

Peanuts

May indicate the presence of peanut protein

Chili; Egg rolls; Enchilada sauce; Marzipan; Nougat; Flavorings (including natural and artificial)

SOURCE: The Food Allergy & Anaphylaxis Network

Aaron