Fight for your right to party!

SO, HERE we are surrounded by the debris of a summer get-together. But unlike the old days it’s not cig butts and wine bottles; this time I’m talking grapes, free from biscuits, and two empty pots of tea, because today we hosted the allergy parent support group for the very first time.

You only realise how keyed up you are about mass gatherings with a food allergic child when you are finally able to hold or go to one without any worries. No-one this afternoon was going to turn up with a peanut butter sandwich in a lunchbox – and I didn’t have to warn anyone of the dos and don’ts in advance. Continue reading “Fight for your right to party!”

A doctor calls…

Well, no, not him – but am v happy to reveal that Dr Tammy Rothenberg, a consultant paediatrician with a specialist interest in allergies will be the resident expert at the food allergy parent support group in Stoke Newington on Saturday 30 June. Dr R – formerly of St Mary’s Hospital, Paddington and now the Homerton, Hackney – will be there to to answer all your burning questions about childhood food allergy. Plus there will be some great allergy friendly recipes to take home, as well as a chance just to catch up and chat with parents in the same boat.

Please follow this link for details and info on how to come along… Would love to see as many food allergy parents from the area as we can squeeze in!

Don’t discontinue the chocolate!

So, I’ve just come back from my second day at the Allergy and Free From Show at Olympia. The last time I was there was 15 years ago for Erotica ’97 – my boyfriend at the time worked for a porn mag, I’m afraid. How things change, eh?

I’m gearing up for a bit of a blog rant about the show, so I’ll save that for now. But this afternoon I came across the Kinnerton confectionery stall and, for the first time, their Luxury Belgian Milk Chocolate bars.

Unfortunately, just as I find them it seems they’re being taken away. The egg, nut and gluten free choc tastes delicious – but it’s now been discontinued. Apparently stockists (i.e. the big supermarkets) weren’t displaying them where people could find them. As a result, nobody knew they existed, sales were low and they’ve been forced to ditch the line. Which is such a shame as these are perfect for the very many kids and adults with nut, egg and gluten allergies out there.

I bulk bought as many as I could reasonably see us eating by the ‘best before’ in Feb 2013 – but I hereby attempt to mount a campaign to Bring the Chocolate Back. They tell me if enough people lobby them for the bars’ return they will consider reviving them. There are so few allergy friendly chocolates out there – particularly nut allergy friendly – that I’d be overjoyed to have it them production. So I’m starting a petition – will you join me by signing it here?

A quick thought

A QUICK thought on the Free From Food Awards that occurred to me as I was scribbling up the winners’ list.

Not only is there an absence of properly nut free stuff amongst them but there are very few foods that are safe for those with multiple allergies. Heaps of gluten free (and dairy free) out there, which is obviously laudable, but I’m worried that gluten free is becoming the fall back for anyone who wants to claim a ‘free from’ or ‘allergy friendly’ tag.

The supermarkets are among the worst culprits – they’re showering us with their ‘free from’ ranges but precious few of the products are safe for nut or egg allergy sufferers. Unless all the main allergens are covered it’s a bit of a box-ticking exercise, no?

That’s why Bessant and Drury’s win for their (*deep breath*) egg free, soya free, nut free, gluten free, dairy free, vegan ice cream caught my eye. (I think they’re probably wheat free, too, but need to check on that.) They’ve created a product that is not just aimed at the food allergy market but that can still declare itself to be allergy safe for many. I’d like to think this is the future for free from foods: not a specialist niche but an attempt to create properly luxury products that exclude the main allergens, but where taste is all.

I think the Free From Food Awards are a wonderful, important thing, but next year I would like to see a few more nut frees, sesame frees, soya frees and egg frees alongside the no gluten and no dairy winners. That’s not just a challenge to the awards, it’s a rallying cry to the industry. Please?

* UPDATE 25/4/12 Would you believe it, I’ve since found out that Bessant and Drury’s ice-cream isn’t ‘nut free’ after all. It’s made in a factory where nuts are present. Unfortunately their website states ‘nut free’ here, which I’m sure is just an oversight and a result of the fact that labelling laws are so confusing. Still, only serves to prove my point, I guess! They remain egg, soya, gluten and dairy free…

Parents need support, too… so here it is

When your child is diagnosed with a string of severe food allergies, it comes as a proper thwack in the guts.

I remember leaving our first paediatric allergy appointment, where skin prick tests showed Sidney was allergic to a catalogue of stuff, including the dreaded peanut, and crying in the car on the way home – well, until my crying set Sid off and I pulled myself together sharpish.

Of course there are far worse things that can happen but knowing that, and appreciating it, doesn’t mitigate the shock. You’re sent reeling: all those half-dreamt notions of taking your toddler to buy an ice-cream in the park, cooking up your favourite childhood treats, skipping round some halcyon village green fete (because we have a lot of those in Hackney) and buying freshly iced fairycakes for an impromptu summer picnic.

Then you start panicking about the next reaction: will it be anaphylaxis? Will you be with him? Will the EpiPen be enough? And schools: how can he possibly ever go to school without you to wipe down all the surfaces and ramraid every other child’s lunchbox for illicit peanut butter? And parties. And days out to cafes. And holidays. And what about this new thing called allergy bullying I’ve just been reading about? And what the hell do you do when every label on everything in the supermarket seems to contain that damn trace of nuts?

...but they didn't warn us about the rednecks....

All of the above are reasons I decided to start this blog. When I looked, in desperation and panic, for something, somewhere, to tell me how to cope, what to buy, where to go, I found that, while the likes of Allergy UK and Anaphylaxis Campaign do very good and important jobs, a lot of the info is incredibly doom-laden. Pics of kids with horribly swollen faces; tales of horrendous reactions in farflung places, miles from the nearest hospital; posters warning of the dangers of travelling anywhere without your EpiPen.

But there seemed to me very few places parents could go to find and share info and advice on everything from allergy-friendly places to eat, the foods and products they buy, recipes they rely on and tactics they adopt for kids’ parties, schools and the like.

Plus, as they say, strength is in numbers. There’s a whole host of misinformation and misunderstanding about allergy swilling about, and an appalling lack of basic training on cross-contamination and allergy-friendly foods within the catering industry, not to mention the shockingly unhelpful labelling of prepacked goods. So a group of parents with the same agenda can perhaps help to persuade a local supermarket to stock a better ‘free from’ range, or a local cafe to improve its allergy-friendly provision, or a nursery to get its allergy policy together, far better than a lone mother or father on a mission might.

All of that is why support for (and between) parents of kids with food allergy is vital. And it’s why I’m so pleased that our hospital, St Mary’s in Paddington, is to become the first hospital allergy clinic in the country to set up a parent support group.

Backed by a £30,000 grant from the Imperial College Healthcare Charity, the first meeting will be held in Ealing on Saturday 21 April, with consultant paediatric allergist Dr Robert Boyle and Katherine Phillips from the allergy team to host and answer any questions. See here for full details.

Says Dr Boyle: “We’re delighted to be able to set up such a useful resource for parents of children with food allergy.

“Parents of food allergic children can have greater knowledge about some things – such as local places to eat or where to buy ‘free from’ food – than healthcare professionals and may be best placed to advise and inform other parents. We are pleased to be able to put them in touch with each other.”

The plan is to roll the scheme out across London, if all goes well – and I am very happy to say I will be helping to launch the second support group meeting, in the Stoke Newington area, this summer.

For more info check back here, follow me on @foodallergyuk or see the St Mary’s support group site at www.allergysupportgroup.org.uk. If you wish to attend one of the support groups or to host one near your home email info@allergysupportgroup.org.uk.

Allergy-Friendly Eatery: Don Fernando, Richmond

This one comes courtesy of the lovely Gemma Morris of Sky News fame… She’s allergic to tree nuts and recently stumbled across Richmond tapas joint Don Fernando, where the staff told her they never cook with nuts nor nut oils.

As she says: “It was great to have such peace of mind when eating my dinner.”

While I haven’t yet made it across the river to sample the fare, I gave them a quick call to see if they do indeed operate a nut-free zone. The answer? “Nope, we never use nuts or nut oils in our kitchen.”

Fair enough, they buy in some desserts and these may contain nuts or ‘traces’, while some breads are produced outside the premises in an environment where nuts may be present.

But every item on the menu, they tell me, is clearly marked with potential allergens – specifically nuts, dairy and gluten.

Why, when so many other places fail to do the same? “It’s just something we get asked quite a lot,” I’m told. “Certainly with nuts it’s potentially dangerous so we decided to label our menus more clearly. And if there’s the slightest possibility of any traces then we say so.”

Co-owner Edoardo Izquierdo adds: “We still believe the customer is always – well nearly always! – right and listen to all suggestions. Hence we try to welcome and accommodate all customers including those with allergies.”

This is a neighbourhood eatery, owned and run by the Izquierdo family since 1990. It occupies an unassuming position on the corner of The Quadrant, slap bang by Richmond tube and mainline stations.  Take a browse of reviews online and you’ll find the same comments: “friendly”, “authentic” and “lively”.

Add to that a big cheer for being allergy-aware and there’s a lesson for every restaurant in town.

Don Fernando, 27 The Quadrant, Richmond, Surrey, TW9 1DN, 020 8948 6447, info@donfernando.co.uk, www.donfernando.co.uk

The Allergy Interview – Gemma Morris

SHE hit the headlines this month after it was revealed she suffered a massive anaphylactic shock while on a skiing holiday in Austria. Now nut allergic Sky News presenter Gemma Morris, 27, tells yesnobananas about her childhood milk and banana ‘cure’, dodgy cosmetics and how to handle eating out…

“There was no pivotal moment when I found out I had a nut allergy. I’ve had bad reactions to nuts from as far back as my memory serves me. As a small child, I used to tell my mother I was experiencing my “nut feeling”. She knew that meant my mouth was becoming itchy and irritated, and I was starting to feel a lot of discomfort.

The usual remedy was to give me bland, soft foods to take the taste away and distract from the feeling. I would have to stuff my mouth with bits of banana or drink a big glass of soya milk (not cow’s milk, it used to give me eczema apparently – an intolerance I have grown out of nowadays).

My mum told our GP about the “nut feeling” episodes. He was apparently pretty unconcerned, and simply told her not to give me nuts!?

I’m not allergic to all nuts. I’m fine with almonds (I love them, eat loads of them) and skin prick testing has twice revealed I’m fine with peanuts too. But I’ve never had the courage to eat a peanut to find out if it’s true!

I didn’t carry an Epipen until I was about 15. The school had no idea about my nut allergy. It was a large school and it felt easier just to keep my Epipens on me and take care of myself.

Many years earlier, at junior school, I remember having an allergic reaction to a chocolate that a friend had smuggled into our cloakroom at playtime. I ended up in the school office, sitting on the sofa where they made all the sick kids sit, just ‘waiting it out’ until the reaction eased off. It was horrible.

People just didn’t know what was happening to me. I didn’t even understand it myself. This was the very early 1990s; I can only assume allergies were less well known in those days.

My friends are very supportive. They’re used to me checking with waiting staff in every restaurant we go to.

When I was younger, there wasn’t much ‘support’ friends could offer me, really. I had my Epipens, my antihistamines, I just took care of myself when out.

I did get anxious about some nights out during those teenage years when alcohol begins to play a role. It sounds a tad over-the-top, but I used to fear that if my friends were drunk, would they still be able to ring an ambulance if I keeled over? Would they be sober enough to notice me choking on the floor trying to grab my Epipen? You can imagine the near-death scenarios I used to play out in my head before a night out! I hasten to add none of it ever actually happened.

I’ve had loads of other reactions while eating out. Among the worst and most memorable were eating a supposedly nut free salad in a café in Malta which turned out to be dressed in pesto! I had a terrible time during the following 48 hours. And eating a basic pasta dish at a restaurant in Wimbledon which I reacted to immediately. The restaurant swore blind there were no nuts in it, but I was keeling over and had to be driven home ASAP.

The nut allergy came up on the first date with my boyfriend because we were in a restaurant and I needed to check my chosen meal was nut-free. Unless I am about to eat something unfamiliar there’s no need to declare my allergy.

I eat out all the time. I just check with the waiting staff whenever I order. I find mentioning the words “severe and fatal allergy” tends to get the kitchen staff to take it seriously.

Actually, I found a great tapas restaurant at the weekend near where I live in Richmond where the waiter told me they do not use nuts in ANY of their cooking – Don Fernando. It was great to have such peace of mind when eating my dinner!

My failsafe food to order is some sort of chicken or fish salad – with dressing on the side (in case it’s a nutty pesto dressing).

When it comes to prepackaged food I’d just recommend checking the ingredients list – always.

With the ‘may contain traces of nuts’ thing it depends what the food is. If it’s something like a pot of hummus then, yes, I do eat it. If it’s a seeded bread, then no – I usually wouldn’t eat it.

To a newly diagnosed nut allergic, I would say: relax, just be careful and always carry antihistamines and an Epipen.

To a parent of a nut allergic child, I would say an even bigger RELAX – your fretting will teach your child to panic about his or her allergy. Growing up is scary enough as it is.

When you are with your child and they begin to have a reaction, please stay very, very calm and gently take the necessary measures. Teach them not to be embarrassed about their dietary needs and to have confidence in spitting something out if it doesn’t feel right!

What I’d like to see is better, bigger, clearer indications on all products containing nut derivatives. Not just food, but cosmetics too. I realised this morning that a new foundation I was about to use contained walnut extract. I wouldn’t have known had I not been reading a leaflet about it.

Please do not feed the kids

English: a little monkey in Lahore zoo
Image via Wikipedia

I wouldn’t say it’s easy to get complacent, exactly, but after a period of going out with no nut issues arising you sort of forget to look for the obvious. It’s as if you’re primed to seek out nuts in unexpected places (cake crumbs lodged in the corner of a highchair seat; smeary marks on the bar of a supermarket trolley) and forget that there are morons out there who might just wave them at your baby indiscriminately.

Last week we braved a music and singing class at a local community centre: dozens of Mums, Dads and Grandmas warbling The Grand Old Duke of York and shaking maracas at their perplexed tots. Or perhaps that was just Sidney. Mostly, he ignored the lady in plaits leading the sing-a-long and shuffled, deadpan, around the room staring at the other children.

Then, about 40 minutes in, I noticed a hive on his neck: just one, nothing too worrying, but a bit odd nonetheless as I knew he hadn’t rubbed or scratched himself. It had to be something he’d touched.

Then my friend saw the Dad with his snack pot of pistachios, doling them out not just to his own toddler but to other babies, too – including my pal’s 15-month-old son. Without asking her permission first.

What was he thinking, handing out nuts to a child far too young to eat them (who for all he knew may have been allergic) and without asking his mother, sat barely a metre away? Allergies notwithstanding, in my book it is never, ever acceptable to give food to someone else’s child without checking first.

If it hadn’t been the end of the class I would have made my point. As it was, it was turf-out time, so I whipped Sidney away to wipe his hands and face, while my friend took her little one to the toilet to wash his hands and mouth in case he took it upon himself to give Sidney a lick or a grapple later.

But it reminded me how stupid some people are. And, yet again, how vigilant I have to be.

My Sidney the sissy

Just say no... to peanuts!

So I’ve just noticed that Twitter and the blogosphere are ablaze with angry parents of peanut allergic kids turning their fury on US journo/ author/ humourist Marty Beckerman.

What’s he done? Penned a scabrous article about how peanut allergic children are “shitty… sissies” and how America, once a nation of “burly outdoorsmen”, is now a “nation of oversensitive babies who can’t eat legumes without our esophaguses fatally closing”.

Instead of “the pursuit of happiness”, he adds, “we [America] have a surplus of sensitivity”.

Contrary to the cautions on Twitter not to read the post I, er, read the post (sorry but how could I not?). And honestly? I don’t see what all the fuss is about.

Number one – he’s being funny. Viciously funny, perhaps, but funny, in the vein of a Bill Hicks rant or a Hunter S. Thompson diatribe. Maybe not Eric ‘n Ernie funny, but he’s not Sunday Night at the London Palladium.

Number two – what this piece really is is not a violent assault on genuine allergy (for heaven’s sake he confesses to being allergic to stuff himself) but an ode to peanuts. Now who can argue with that? Personally, I’m devastated that Sidney can’t ever sample a Snickers (the Marathon of my youth) or Nutella spread thick on hunks of white bread, or – my husband is particularly devastated about this one – peanut butter on hot toast (don’t even get me started on peanut butter and banana). Not too bothered about M&Ms, though. Too brash.

Number three – he has a point, buried in the midst of all the bombast and belligerence. America, Britain, Australia, so many countries in the world today, have become nations blighted by a surplus of sensitivity. It’s perfectly true – we just don’t know why yet (and, no, I very much doubt he really thinks the reason babies like Sidney are allergic to peanuts is because they’ve spent all their time “playing video games, watching TV, text messaging, surfing the web, and murdering their parents in Satanic rituals”). Though probably some kids do spend too much time doing that stuff (maybe not the killing bit) and, as an aside, it’s a valid comment.

Number four – just because my baby has allergies doesn’t mean my sense of humour needs to leave the room along with the nuts (and the eggs and the banana…). This may prove controversial, but one of the big problems that surrounds the issue of allergy today – and which I think serves as a block to other people, frankly, giving a shit – is a ‘woe-is-me’ mentality. Woe is me, a bit, but we’ve got to live with it, and deal with it and, truly, I’ve heard and read far more offensive stuff from people with far less tongue in cheek than Marty Beckerman plainly has.

In short? Laugh at it, ignore it, harrumph at it if you want but move on. There are bigger battles to be fought and this isn’t one of them.

(PS It’s up to you but you can find the post here)

Risk it for a biscuit?

I have a dilemma.

I know most ‘may contain’ food labelling is about arse-covering more than anything else, but do we let our nut, egg and sesame allergic Sidney eat pre-packaged foods that, on the face of it, are fine to eat, but contain the rotten little addendum: “Produced in a factory that handles egg, nuts and seeds”?

Our doctor, who we like very much because he’s sensible yet sunny, says those ‘may contain’ goods are most likely fine to eat if they’re from a major manufacturer or a household name supermarket. But, as he puts it, it depends on how risk averse you are.

I’d like not to be risk averse. I don’t want Sidney to go through life fearing travel, or eating out, or even eating in. I don’t want to deny him foods that would actually be fine to eat out of some vague sense of panic and because the brand’s lawyers said ‘stick that on there just in case someone sues’.

Today at Sainsbury’s I hovered over the baby snacks aisle, and two packs I hadn’t seen before: Plum’s ‘Strawberry Oaty Chomps’ and Ella’s Kitchen ‘Strawberries & Apples Nibbly Fingers’.

At the moment, his only between-meal snacks are fresh fruit, rice cakes, those full of air sweetcorn puff things and yoghurt. It would be lovely to let him have something different and these new bars seem all good: fruit, oats, quinoa…

But they are both produced in the bloody factory that also produces nuts blah blah. I have to confess, it annoys the hell out of me. The foods they make for younger babies have no such warnings; I assume it’s because controls are far stricter for the under-1s and that, once they’re past 12 months, it gets more of a faff, and more expensive, for the manufacturers to continue to be so rigorous.

So I hovered, and I picked them up, and I bought them, and now they’re sitting in our special allergy drawer in the kitchen (yes, we have one). But I’m too nervous to let him eat them. Yet.

What would you do?