Twitter Q&A on the AAI Shortage with Lynne Regent

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As many will know, there is rising concern over the national shortage of Adrenaline Auto-Injectors – the devices best known by their brand names, such as EpiPen, Emerade and Jext, which are the first and only port of call in the event of a serious anaphylactic reaction. Many families are finding it impossible to fulfil their prescriptions. On @allergyhour over on Twitter last week we put some questions to chief executive of the Anaphylaxis Campaign, Lynne Regent. Here are her responses below:

Q: How long before expiry should we request more auto-injectors from our GP?
Lynne: One month

Q: Aside from those EpiPens granted an increased four month usage beyond their expiry dates, in an emergency how long are expired EpiPens OK before we can no longer use them?
Lynne:
The activity of Adrenaline Auto-Injectors does reduce after the expiry date, however they are safe to use beyond expiry unless the liquid is discoloured and contains particles – then it should be discarded. If in doubt please ask your pharmacy to check with you.

Q: Schools are refusing out of date pens. How can we work to allow schools to use/keep expired EpiPens until the supply issues are resolved?
Lynne:
Schools may require a letter from a GP or a pharmacy to explain the circumstances. If you have any difficulties please contact our helpline on 01252 542 029.

Q: My chemist has no pens in stock. What should I do?
Lynne:
You may need to revisit your GP to ask if they can prescribe an alternative medication, and call the customer service lines for the pharmaceutical companies. For full details see our statement.

Q: The situation seems to be getting worse before it gets better. What is the time frame for all unfulfilled prescriptions to be filled and full stock to be returned?
Lynne: We are unsure when stock levels will return to normal. We will continue to be in contact with the Department of Health, the Medicines and Healthcare products Regulatory Agency [MHRA] and the pharmaceutical industry for the most up-to-date information.

Q: We know Brexit may further complicate things. What are the contingency plans?
Lynne: We can’t answer this question on Twitter – it is a complex question that requires a wide-ranging debate.

Q: Will the approval of a new generic EpiPen in the US ease the situation over here? Will it be available in the UK?
Lynne: To our knowledge no requests have been made to get another adrenaline auto injector licensed in the UK.

Q: What should people who have no pens, and can’t get any from their pharmacist, do?
Lynne: Call the customer service lines for the pharmaceutical companies – full details on our statement.

Q: What is the Department of Health doing to work with you at the Anaphylaxis Campaign?
Lynne: We have been in direct contact regarding the availability of Adrenaline Auto-Injectors in the UK and they are working with the Medicines and Healthcare products Regulatory Agency and the pharmaceutical industry to manage the situation.

Q: Why are some batches of EpiPen OK to have their expiry dates extended where others are not?
Lynne: Mylan UK have obtained acceptance from the Medicines and Healthcare products Regulatory Agency to extend the use of specific lot numbers following rigorous testing.

Join @allergyhour every Thursday, 8.30-9.30pm, for the chance to share recipes, thoughts and info about living and coping with allergies. 

 

 

The good news (with a little tiny ‘but’)

images-4OUR VERY wonderful allergist, Dr Robert Boyle, has just released some new findings that should make reassuring reading for parents of children with diagnosed food allergy.

After collating data from 13 studies worldwide, he and his research team at Imperial College London have calculated that for children and young people with a food allergy  aged 0-19, the chance of dying from anaphylaxis in any one year is 3.25 in a million.

To put that in context, in Europe the risk of being murdered is 11 in a million. Continue reading “The good news (with a little tiny ‘but’)”

“Your safety is our priority.” Tell that to Tracey.

American Airlines Toronto to Miami Business Class Meal IT’S BEEN more than a year since I posted my rant about British Airways and its useless allergy policy. Since then, we’ve continued to fly with the airline because (a) we’re Executive Club members and the points are handy (b) the flight times are often the best for us and, more to the point, (c) my parents often (very kindly) treat us all to a family getaway and they fly with BA.

Mostly, despite my simmering annoyance about the company’s stubborn refusal to make any allowances for those with life-threatening allergies (unlike Monarch, EasyJet, Thomson…) we’ve been lucky enough to encounter helpful cabin crew.

Continue reading ““Your safety is our priority.” Tell that to Tracey.”

Attack of the ice cream (when accidents happen)

252562895_99c2c7b661TODAY A TODDLER put an ice cream covered finger in my baby girl’s mouth.

My first reaction was to yell ‘Noooo!’ and whip her out of her pushchair to douse her mouth out with a wet wipe.

Then I started to panic that she might react (so far she appears allergy free but Sidney’s doctor advised we delay the introduction of egg, nuts and sesame to his little sister until she is properly tested later this autumn). Then I began to shake, thinking: “Oh my God, what if someone had done that to Sidney?”

Continue reading “Attack of the ice cream (when accidents happen)”

“What’ll I do (ting-a-ling) when you (ting-a-ling) are far (ting-a-ling) away..?”

panicPANIC at Nanny and Nonno’s house tonight where Sid is having a sleepover: sudden clutching of tummy and inconsolable screaming at bedtime.

All became clear when he farted.

(In all seriousness, though, this is what allergy does to you: every minor rash or windy pain takes on menacing import; you wonder “has he eaten something he shouldn’t?”, “is this a reaction?” as you grapple with one hand for the Epi.)

On reflection, he probably ate too much of Mum’s homemade ice-cream…

Allergy-friendly holiday: Higher Lank Farm (Part I)

IMG_5711WELL, IT’S taken us more than two years and I never thought we’d do it but… we did, we have, we found a holiday place that caters for food allergic children!

Welcome to Higher Lank Farm, a glorious working farm in the midst of the Cornish countryside where the wonderful Lucy Finnemore has taken it upon herself as a challenge to cater for the oddball needs of food allergic kids. What a lady.

We only heard about this place after a friend, whose own toddler has a similar raft of allergies to Sidney, stumbled across it while searching online for child friendly UK breaks. She saw the website, which mentions in passing – and in typical no-razzmatazz Lucy style – that they “enjoy catering for people with special diets and food allergies” and there you have it.

Continue reading “Allergy-friendly holiday: Higher Lank Farm (Part I)”

Anapen recall

The last place you expect to hear that your tot’s Anapen adrenaline injector is being recalled is on BBC 6Music news. But you can blame the manufacturers for that – apparently they failed to prewarn the hospital allergists about the recall before deciding to issue a press release. Nice.

I’ve literally just got off the phone from our lovely doc who confirmed the Anapen is indeed the subject of a voluntary recall here in the UK, because of potential issues with the plastic needle sheath affecting the dosage of adrenalin. We’re to be called into the hospital over the next couple of weeks and retrained in EpiPens instead.

Click here for the Reuters report – all I can currently find online.

But some words of reassurance from our doc: the Anapen is only being recalled here in the UK and not in other European countries (for example France, where it is used more commonly). Those countries are waiting to know the results of further tests before they make any decision, so here in the UK we are just being a little more cautious.

There’s also no evidence that anyone has been affected by faulty Anapens, and testing of 26,000 of the devices here hasn’t previously thrown up any issues.

That said, for peace of mind I’m keen to switch to the EpiPen as soon as possible.

Check back here for more updates as and when they come…

* Update 1.30pm bit more info here

Yes, er, yes bananas?

I can’t quite believe it but it looks as if we may have beaten this ridiculous banana allergy. Yesterday was hospital taste test day and, for the first time ever, Sidney passed if not with flying let’s at least say determinedly flapping colours.

A few weeks ago we had a follow-up series of skin prick tests, which suggested that the banana allergy could be going: from a bumper 12mm hive reaction when he was six months old to 3mm this time around. A taste challenge under hospital conditions was the only way to know for sure.

It’s a long and boring process, starting with a dab of fruit on the lip and building up to eat about 20g, with 20 minute gaps between doses and a constant round of blood pressure, oxygen, chest and skin checks throughout.

To quote Angela Carter – or, rather, her Cockney heroine Grandma Chance – I’ve learned to “hope for the best, expect the worst”. We’ve had taste challenges for wheat, sesame and green pea so far and failed every one, to varying degrees. But five hours in and, as a nap-less Sid was veering dangerously towards meltdown, we managed to spoon the last lot, a hefty cupful, in. And while we didn’t quite make it through scot-free – a few ambiguous red splodges showed up around his chin – the verdict was that this banana thing is on the way out.

Now we have to wait for 48 hours to make sure there’s no delayed reaction, and during the coming two weeks feed him banana two or three times. All being well, bananas will then be in his diet as a matter of course – with care taken to ensure he never goes for more than two weeks without having some, at least while he’s still young. The reason for this is that there have been cases where children have got over certain allergies but haven’t actually liked the food in question enough to ever eat it. Then, weeks or months later, they try the food again and find they have another reaction.

Banana is a funny one. It’s touted as one of the safest and best weaning foods and everyone does a double-take when you say your baby is allergic to it. Yet it’s not as rare as you might think.

In some cases banana allergy has strong links to latex allergy and goes hand-in-hand with reactions to the likes of avocado or kiwi. But there is another strain of allergic reaction to banana among babies that appears pretty much isolated to that fruit in particular.

There’s not a lot of research yet so no solid stats but, anecdotally, it’s said to disappear in around 80 per cent of those cases by two to three years of age (as, we hope, with Sidney). Robert Boyle, clinical senior lecturer in paediatric allergy at Imperial College London, notes: “We do see quite a few infants with early onset banana allergy which resolves fairly quickly.”

As a little side note I have one word of advice: if your baby reacts to banana – or, indeed, anything – don’t mess about trying to self-diagnose or listening to friends who became doctors at the Trawling the Internet School of Medicine. We had people warning us that, now Sid had reacted to banana, he’d be forever fated never to go near everything from courgette to melon, kiwi, chestnut, cucumber, tomatoes and celery. Crap. The only way you’ll ever know for sure is to get tested, properly, by a real expert.

Anyway, if banana is back on the menu it opens up a host of happy possibilities: egg-free cakes often demand banana as a substitute, bananas on (wheat-free) toast is a good little failsafe and it’s rare to find a shop or cafe that won’t have a banana in event of a food emergency. Plus so many of those fruit pouches and smoothies you get from Ella’s Kitchen and Plum have a sneaky banana in them to thicken up the mix.

It feels a bit weird: we’ve got so used to veering away from babies wielding bananas that it seems wrong to have any in the house. My husband and I haven’t picked one up since last May, in solidarity and because Sid reacted just to a touch of the fruit.

On the flipside, we carted in a load of fresh beans and pulses for skin prick tests at the hospital this week to see what may and may not be possible to introduce. We’ve had to be very cautious because of the peanut, chickpea and green pea allergies; they’re all related legumes so we haven’t dared to introduce any more. Unfortunately, green lentil, red lentil and broad bean all flared up something rotten. But a string of others – cannellini, borlotti, kidney, butter and French beans – scored a zero. We have to play it cautiously, as a negative score doesn’t mean he won’t react when he actually eats them, but we can try to introduce one or two of them carefully, antihistamines and Epipen at the ready, and see how we go.

But the future, well, it seems to hold bananas! Bananas and (egg free) custard! Banana split! Mashed banana and milk!

Just one worry – am I going to have to rename this blog?

Cavendish bananas are the main commercial bana...

Nursery will have to wait – for now

 

Nursery School
Is the perfect nursery out there? (Photo: Editor B)

While there’s no way I’m sending Sidney to nursery until he’s old enough to communicate how he feels, there are crazy waiting lists in our area (I’ve heard of otherwise sane women putting their prospective babies’ names down virtually the minute the stick turns blue) so we’ve been checking out the local options.

We’d heard good things about the nearby community nursery, set in a Victorian former fire station, with its philosophy of celebrating diversity, representing a proper cross-section of local people, all that fine stuff. We booked ourselves in for an open day.

It was a bit hectic and tumbledown but had a nice feel to it and the kids looked happy. So I asked: “What’s your policy on children with severe food allergies?”

“Oh, it’s no problem,” came the answer. “We’ve got loads of kids who are vegetarian, and even one who doesn’t like cheese.”

You might say she was the wrong person to ask – she wasn’t the manager, just one of the nursery assistants – but, for me, unless every single member of staff, permanent or itinerant, is properly trained in food allergy control and Epipen use it’s out of the equation.

I should have fired off an email to the manager, telling her exactly that and asking why they didn’t have a proper allergy policy in place. But I didn’t. I ought to get round to it. Who else will be our advocate, after all?

On the plus side, and after some trawling about, we have found a nursery that seems to have its act together. It’s cosy, jammed with cushions and squashy dens and books and murals, and it’s immaculately clean. As parent to an allergic child it’s the first thing you look for – in doctors’ waiting rooms, playgroups, cafes, even (guiltily) other people’s houses: how clean is the floor, how clean are the toys?

More often than not there are crumbs coagulating in the corners, smears of food, smudgy fingerprints. For most parents this would be fine: a little bit of dirt’s got to be good for the immune system, right? But for us it’s a gateway to worry: were those mucky hands clutching a peanut butter sandwich? Are those crumbs from a seed-packed breakfast bar? Is that smear – gulp – hummus? It’s a wonder I’m not sponsored by Milton’s, the sheer volume of their wipes I get through.

But the joy of this nursery was that, peer as I might (and I can peer mighty well), everything looked spotless, spick and span.

On the walls were boldly printed, carefully typed sheets detailing the various allergies of children at the group – this one’s Coeliac diet, that toddler’s milk allergy, little so-and-so’s wheat intolerance. In the kitchens the prep areas are carefully delineated and potential allergens kept at a safe distance from foods eaten by allergic tots. A member of staff is charged with monitoring each child with an allergy during every meal time. And they are Epipen trained at regular intervals – and given booster training every time a new allergic kid is admitted.

Hurrah. We’re putting Sid’s name down for September 2013.

 

& more to come

The rest is a long and boring story, but the upshot is this: we were sent home clutching a bottle of Benadryl, a prescription for two EpiPens, three pamphlets on nut-free, wheat-free and egg-free diets, a good deal of sensible advice from the doctor and dietician and now, nine months on, here we are.

We’ve added a few more to the list since then: sesame’s the latest, which, coupled with chickpea, means an end to my hummus obsession (well, it means having to brush my teeth, wash my hands and wipe down all surfaces after eating the stuff which, frankly, is too much of a faff. I’ll have cheese and pickle).

There’s also green pea, which developed out of the blue after he had spent an entire summer wolfing down peas with no ill effects, and – according to the last set of blood tests – most tree nuts, which means avoiding them all for now.

It’s surprising, though, how quickly you get used to it; it’s having to explain the complexities of what we can and can’t have to other people that’s the problem.

Even though I know very well that just a touch of the wrong food on his skin could trigger a severe reaction, I can’t help feeling like a fraud and a fusspot every time I go into my spiel about the dos and don’ts of what to eat during playdates with Sidney… or whip out my Milton’s sterilising wipes to give the highchair in the park caff a good rub down.

We’ve been lucky, so far, in that his reactions have only ever been skin related. Of course, in the back of our minds is always the worry that next time it could be worse. He reacted very swiftly and strongly to just a touch of both sesame and egg: an indicator, potentially, of a more dramatic effect if he ever actually ingested any.

On the plus side we know what to avoid and have all the medical gizmos and knowhow we need – fingers crossed – to tackle any reaction. That’s all manageable for now: he’s 14 months old and it’ll be a good while yet before I let him our of my sight for any length of time. Nursery isn’t happening, as far as I’m concerned, until he’s at least old enough to communicate how he feels. I simply can’t trust anyone else to keep an eagle eye on him in the same way that I, my husband or our closest family would.

The biggest thing, really, is trying to keep him safe from harm while never, ever wanting him to feel like the funny allergic kid.