Twitter Q&A on the AAI Shortage with Lynne Regent

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Q: Schools are refusing out of date pens.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. 

 

 

Shea panic

ONE OF THE few mainstream chocolates that is safe for Sidney to eat is Cadbury’s Buttons. This is fantastic because:

* they are kiddie-friendly

* they come in teeny packs so it’s easy to limit the amount he shovels in

* they are available everywhere so it’s the perfect party bag sweet to suggest to friends

* they are available everywhere so it’s the perfect treat for family to buy

* they are available everywhere so if we find ourselves in a situation where we’re out with friends and every kid is having an ice cream, or a cake, or something Sidney can’t have, it’s easy to track down a packet of Buttons for him to enjoy

* they are brilliantly versatile for cake toppings, biscuit decorations, etc

So imagine the panic when a new ingredients listing turned up on selected packets of Buttons a little while ago: shea.

Yes peas

DID IT! Passed our hospital green pea challenge! Three pots of peas scoffed before lunch and all is good. We now have to wait 48 hours to ensure no delayed reaction, then come Saturday we can embark upon a pea frenzy. I think the key to our success this time was the dress code. I can strongly vouch for the curative powers of a top hat.

 

 

‘Demystifying Oral Food Challenges’

JUST a quick link here to a very helpful, step-by-step guide to oral food challenges from the Kids With Food Allergies Foundation. It hails from the US but maps out how to prepare your child and what to expect. Thanks to Dairy Free Baby and Me for the tip.

I particularly like the point about how a reaction (i.e. failing an oral challenge) can be a learning opportunity: until last week, Sidney had never even eaten any egg, so the notion of being allergic to it was entirely abstract. While not particularly pleasant, he now knows that eating just a small amount can make him feel unwell – perhaps enough for him to recognise an allergic reaction should it happen again.

Well worth a read.

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

OUR 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.

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

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.

Attack of the ice cream (when accidents happen)

TODAY 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?”

Hello, Hazel

GOOD news: we are OK with hazelnuts!

After scoring a zero on Sidney’s last two skin prick tests, we were given the go-ahead to try a taste challenge at home. Actually, we were given the go-ahead a year ago but couldn’t for the life of us find any hazelnuts in their shells (naked ones run the risk of being contaminated by other nuts) until Christmas. And then I had a baby and we only got round to it now.

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

PANIC 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…

Lovely bunch

SO it turns out that Sidney’s apparent delayed coconut “allergy” is not, in fact, an allergy after all but a consequence of me feeding him the equivalent of half a cup of lard.

Oop.