Allergy Awareness Week and #livinginfear - top tips for teachers

This week is Allergy Awareness Week and this year Allergy UK are focussing on the fear most people with severe allergies live in every single day of their lives.

Did you know?

BRITAIN is in the grip of a major allergy crisis, with millions of sufferers at risk of dying because of a terrifying lack of life-saving awareness among the public? And those not at risk from life threatening allergic reactions are living compromised lives in fear of chronic pain and illness?

Allergy UK are raising awareness of the fears of allergy sufferers this week and are asking people to get involved on Twitter. You can join the awareness campaign on Twitter using the hashtag #livinginfear and tweeting a picture of yourself with your biggest fear. My allergies are hugely restricting though and have had a massive impact on my life- and continue to do so. But as a mum, my biggest fears are for my children, who are more profoundly affected by allergy. 

So here's my photo:-

Children with food allergies can feel isolated in school as well as elsewhere. So much of their lives, of our society revolves around sharing food. And as with children who suffer from disabilities or chronic illness children with food allergies often lack independence. Food is a basic human need, but for kids with food allergies this basic daily task is fraught with anxiety and the need for constant vigilance. It’s also a fundamental step in growing up to gradually sever the feeding bond with your mum, but imagine if your mum was the only person you could trust to feed you? It’s pretty restricting. My nine year old twins rely on me totally for their food, school cannot cater for them and neither it seems can anywhere else. They are most definitely very “attached” to me still, and I now understand why. (You can read more about food allergy and independence here.)

Isolation in school is a particular concern for me, my children are mostly well accommodated in school but cannot participate in cooking sessions, many trips, school lunches etc and constantly feel "different". Other parents are anxious about inviting them home to play as food is such an integral part of entertaining, and consequently they feel even more isolated in school.

So here are my "Top Tips" for teachers (I was one once too!) to help reduce isolation in school:-

1. Plan ahead. Most mums of kids with allergies will bend over backwards to help their child and will be only too happy to provide ingredients, advice and reassurance. (Just don’t contact them late the night before you are baking to request a list of ingredients!)


2. Listen. Mums really do know their children best and are usually just following instructions from health professionals. Whilst there are undoubtedly a few who are over anxious and possibly ill-informed the vast majority will have genuine concern and want to keep their child safe - whilst not wanting to restrict the enjoyment of any other child in the class.


3. Keep food treats in school to a minimum, or (as our children’s teachers did) plan ahead and ask for a safe treat for the allergic child.


4. Ensure safety doesn’t stop fun. It’s vital all children are safe in school, but that doesn’t mean children cannot have fun. Safety must also be age appropriate too. So at age nine my twins can cope with baking something they know they must not eat, but are supervised when they do. A Reception age child could never cope with this! Similarly, making the child who carries an Epipen for a dairy allergy your class milk monitor isn’t a very wise idea!! (It happened to us though!)


5. Avoid making the child who IS different feel different. Pretty obvious, but subtlety is key. Substituting safe chocolate in the class advent calendar and making a note of the date for the allergic child to take it is far, far better than leaving them to come to you to swap their treat in front of others.


6. Food still needs to be fun though, and even children with allergies need positive experiences with and around food. You can substitute many ingredients easily, there are recipes for children on exclusion diets on The Recipe Resource ( http://thereciperesource.blogspot.co.uk) and lots of other sites too!


7. Tackle the “Healthy Eating” message tactfully. With recent research to demonstrate that fats are not always the bad guys, the message is becoming slightly blurred anyway, but children with food allergies are missing important proteins from their diet, and often important fats too. Our twins were wisely told by a senior dietician that they need plenty of fatty foods like chips, and oils like olive and hemp oil in their diet as they are dairy free (amongst other things) and miss the natural fats present in dairy food.


8. Don’t judge. I was once asked why there were concerns about my daughter’s growth when she was clearly very chubby, and that she looked really healthy. Children are all different, but children with food allergies, especially the non IgE ones are prone to poor growth. Poor absorption leads to poor growth - and the body needs to gain mass before it is able to grow upwards. My kids were short and chubby for a long time, sadly it wasn’t a sign of health at all. It’s stressful enough as a parent to navigate life with a child with food allergies, judgement from others is hard to take.


9. Expect to see more of the parents of kids’ with food allergies. They are not overly fussy, and need reassurance as much as their children. They are your best allies for a smooth year with an allergic child in your class, and dislike being the “bad penny” often feeling embarrassed ad in the way. Any reassurance is much appreciated!


10. Educate. Obviously - you’re a teacher :) But a tiny bit of knowledge for the allergic child’s peers goes a long way to helping them feel one of the class. There is a simple explanation aimed at Key Stage 1 children here.

Allergies have a serious impact on sufferer's lives, and they are certainly life changing, but we can and should limit the fear they live in. Unfortunately the current situation is almost unbearable for some, and as the excellent article in The Guardian last week explains ignorance about allergy is not helping. This is why awareness is key.

About Me

Firstly, this post has NOTHING to do with me!

Honest!!

As our regular readers know, the main testers/tasters for the Recipe Resource have quite a few health issues as well as allergies and it can be a bit confusing for those caring for them - e.g. teachers in school.

Obviously like anyone else we have completed the medical sheets for school, and written a long page detailing diagnoses, medication etc but what staff *really* need is a quick, "go-to" sheet, preferably with a photo of the child concerned with a sentence to introduce them, then approximately ten points in the child's words to describe how their condition affects them.
This is especially valuable if there are new or supply teachers and avoids bombarding them with unnecessary medical information.

Free From Foods are NOT a Lifestyle Choice

I published this on my other Blog Musings of a 21st Century SAHM in response to an email received today.

In my inbox this morning was a request to complete a short and sweet questionnaire about "Free From" foods. Right I thought, I'm a bit of an expert on that one... should only take me a minute! So I duly clicked on the link... how long could it take?!

Well that depends on whether you find the questionnaire possible to complete in the first place, and whether it triggers a response like this or not :-

So why I am getting so hot under the collar about an innocuous set of questions? Well here they are:-

I'll tell you what my "attitude" towards them is; that they are an essential, vital form of sustenance for my children who would otherwise become very ill. Foods which are sold as if I should be grateful, which are often poor in nutritional content and high in price, which we cannot do without.

It wouldn't be so bad if the first option in question 2 was "Medical Necessity" - because after all, that is the main reason the "Free From" food industry exists, even if it has become something of a fad amongst many, and this growth in consumption of "dietary" foods has undoubtedly increased production, which benefits us all. However, if the main focus for it's existence is forgotten, short cuts will be taken and those with medical needs will be the first to miss out precisely because  - and hear we come to the crux of the argument - for us it's NOT a CHOICE! 

Eating "freefrom" food is not a lifestyle choice for the vast majority, it's a no-alternative, medically imposed way of life and to suggest otherwise is both ignorant and offensive.

So when faced with a questionnaire asking me to rate answers as to why I choose "free from" food in order of importance, seeing options such as "helps weight loss" and "they are lower calorie" makes me not a little cross!

Main Meals for Kids

I find my biggest challenge is providing a balanced week day menu for my children after school. Their school will not provide them with a hot lunch, so I make up a cold lunch daily for them both. Their older brother is "only" gluten free which is slightly easier, and his High School provide him with a nutritious hot meal every day which is a MASSIVE help to me.

Like many other children with food allergies, my twins have some swallowing issues. Reflux alone usually means "sticky" food is harder to swallow, and really dry food can stick at the back of the throat. This is because reflux often desensitises that area making the swallow reflex slightly delayed - usually not much of an issue but in persistent reflux it can become a problem.

Our daughter suffers particularly with this and has to sit upright, pace herself and is very good now (at age 8) in knowing what she can and cannot manage to eat without risking choking.

And, like almost ALL children, those with allergies will still have likes and dislikes, favourites and food they wouldn't touch with the proverbial bargepole. Lastly, children with food related disorders and health conditions almost always have an overly strong emotional relationship with food. It *really* matters to them, it is often a bigger focus than maybe it should be, and they care deeply about what they can and will eat. (And what they can't!) So catering for this group can be akin to stumbling blindly through a minefield!

It's therefore even less acceptable to fob them off with the same meal several days a week (unless there are other reasons for doing so, we did it when weaning our son from tube feeds so I would never condemn anyone!) and given their dietary restrictions, nutritional content is absolutely KEY. I recently wrote about the Free From Food industry and whilst it is fine to use ready meals occasionally, most are high in salt and sugar to add flavour. You simply cannot beat cooking from scratch -and it really isn't difficult.

So here is a sample week-day meal planner for primary aged children, which you can rotate as necessary. It relies on several staples which you can easily keep in your freezer and a couple of half days (or evenings) of batch cooking. I've tried to exclude recipes which have the main allergens in, and the majority are meals you can cook in advance and freeze if desired.

Alpro Soya "Nut-gate"

The Interwebs are currently buzzing with the news that Alpro Soya are now printing warnings of potential hazelnut and almond contamination in their soya products as they are altering sites for production of their dairy free alternative milks. Understandably, there is an outcry as many who avoid dairy products choose soya as their dairy substitute and are also allergic to nuts. Alpro responded to concerns on the Allergy UK website. Certainly their measures sound as stringent as anything any parent of an allergic child can achieve by any other means but there are always those who will be affected. This is a production choice Alpro have made and they may indeed lose customers because of it. However, I sincerely believe the bigger issue is being ignored here.

In an increasingly allergic world there are as many combinations of allergies in individuals as there are allergic people. And any reliance on only one substitute can precipitate issues including new allergic responses. The reliance of the dairy free industry on soya is not a long term option, far too many people have IgE and non IgE responses to Soya - and it is one of the "Big Four" to avoid  according to many health professionals. Certainly Gt Ormond Street Hospital advise going "MEWS free" as an important first step when embarking on exclusion diets. (MEWS = Milk, egg, wheat and soy)

Undoubtedly Allergic Disease is almost epidemic at present with the UK topping the world table of incidence of allergic disease. More about that here, information learned when I attended the All Party Group for Allergy at Westminster this Autumn. We should not be complacent in our careful replacement of major allergens from our own or (especially not) from our children's diets. Fortification of alternatives (e.g. calcium and Vitamin D in milk alternatives) is essential, as is careful pricing of worthwhile products, support for new producers and accurate information for consumers. The fact that yet another producer appears to have caved to the litigation-prevention soft option is not good news. It seems a massive fob-off for those shopping for exclusion diets - avoiding the issue of careful checking and stringent manufacturing processes. Or does it?

My Guest Post on WhatAllergy?

Ruth at WhatAllergy? has kindly invited to me to write a guest post on her Blog.

What Allergy is one of the Top 5 Allergy Blogs and I am thrilled to have been asked to contribute. Packed with over 400 articles about living with multiple food allergies, intolerances, eating out, gluten free, coeliac disease, eczema and a whole lot more it really is a mine of information.

Gut Allergies - and why we NEED awareness and understanding

On the support forum I run and another I co run I am constantly writing the same replies to the same questions. Time and again the same questions come up - a child/baby with reflux who the doctors say they will "always" outgrow by 6 months fails to do so. Then 12 months comes, but weaning is problematic and the child appears to be reacting adversely to Cows Milk, Wheat and other foods. Tests are negative and parents are fobbed off and made to feel they are blowing symptoms out of proportion.

Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.
You would be horrified how often this happens, I hear about it all the time.

Some carry out endoscopies but stop above the stomach and the results are clear - so there must be "nothing really wrong". All too often the spotlight is then turned on the mother who "must" be neurotic, over-reporting symptoms, depressed perhaps? But lack of understanding or explanation is NEVER an excuse for being dismissive and accusatory. Ignorance does not excuse such actions - or have we not come so far from the Witch hunts of the seventeenth century? I have no explanation does not equal "someone is to blame". Even the most sympathetic doctors run out of ideas when tests come back clear.

I'm not sure what alarms me most - that there is still so little understanding amongst health professionals about gut allergies and their impact on the full length of the GI tract and elsewhere, or the stark truth that gut allergies in infants and children are occurring in epidemic proportions.

For us, we struggled for years with all of the above until we were referred to GOSH who FINALLY performed scopes below the stomach. Bingo. Serious bowel inflammation, duodenal ulcers and other damage. Everything above the stomach had looked near perfect, ph studies had been reasonably  acceptable... and skin prick tests negative for the most part. Dealing with an emergent disease like EGID, or symptoms which doctors have yet to put together and diagnose is a massively uphill slog, and unless you have the strength of Goliath, the stubbornness of Thatcher and the unwavering focus of Churchill you don't stand a chance.

But aside from all this the bigger question is being neglected - WHY are SO many children suffering severe gut allergies? Why does our youngest generation suffer food protein allergies on epidemic proportions? Because seriously, that's what we are looking at here. At the twins' school, six children have diagnoses of EGID now. SIX. And of those I have helped support on forums over the years, friends I have made, I know about 50 children with gut allergies impacting seriously on their lives. Our Consultant at GOSH asked my daughter and I to appear on TV for the 100th Anniversary of GOSH to spotlight the Gastro department and highlight the escalating number of children suffering from gut allergies. He used the word epidemic then, and it was no exaggeration.

But it seems no one is doing the Maths, taking the data and analysing it. No one is sending out the information and any new results to local hospitals, explaining how gut allergies work, sharing new knowledge. Our NHS is functioning in crisis mode and only dealing with the here and no, the in-my-face-and-un-ignorable crisis/case I have to address. But at some point, SOMEONE or some group is going to HAVE to address this massive issue and start looking at why our children cannot eat. At why their digestive systems are no longer happy in the twenty first century first-world environment we are bringing them up in.

Until then, I will continue to post the same answers, day after day, and share the information I have learned over the years, the information GOSH share through their APG Study Days for Parents and Professionals because until *everyone* understands what a gut allergy IS (and it is NOT an intolerance!!)  there is no hope of a consistent, helpful approach for parents in the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. And I, for one, cannot live without hope. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.