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In recent weeks, I’ve heard of several parents having difficultly obtaining EpiPens, as their local pharmacies were “out of stock”. However, this morning, I heard on Facebook that one chemist had advised that EpiPens have been “withdrawn”.

EpiPen confirm: no withdrawal and back in stock

I emailed EpiPen and received a very prompt response from Meda Pharmaceuticals that they have not been withdrawn and are available again from today. Meda told me:

“Meda can confirm that EpiPen Jr has not been withdrawn.  Due to high levels of demand created following the recall and unexpectedly long out-of-stock of an alternative adrenaline auto-injector, Meda  were experiencing a temporary “out of stock” situation of EpiPen Juniors 0.15mg.

We have been working hard to rectify this situation and can now advise you that your pharmacy can order stock again, today the 23rd May.

Meda Pharmaceuticals is committed to ensuring that people with severe acute allergic reactions (anaphylaxis) can access reliable emergency treatment when they need it and would like to apologise for this unfortunate situation.”

What should you do if your chemist is out of stock?

What should you do if you have a prescription for an adrenaline auto injector (AAI) but the chemist is out of stock?

There are three types of AAI available in the UK: EpiPen, Jext and (new brand) Emerade.

In December 2013, several batches of Jext pens were recalled due to a manufacturing fault. When our Jext pen expired earlier this year, our GP gave me a prescription for a replacement Jext. In light of the recall, our local pharmacist gave me an EpiPen in its place. I didn’t have to go back to my GP for a fresh prescription: the pharmacist simply substituted the brand of AAI. So if your prescribed AAI is ever out of stock it is worth checking with the chemist if they can give you one of the other two brands.

I also understand from a pharmacist (thank you, Conan!) that it’s worth ringing round other chemists. Different pharmacies use different wholesalers. So just because one chain of chemists is out of stock, another might not be.

Check your Jext numbers

One final word of warning. A couple of weeks ago my friend picked up her first prescription for Jext pens. She went online to register the pens and discovered that both of the pens she had been given were from the batches that were recalled in December 2013.

This shouldn’t happen. Jext advised pharmacists at the time to “return all non-dispensed Jext® from affected batches to their local Alliance Healthcare distribution centre for a full refund”. However, my friend’s prescription shows that oversights do happen – so it’s worth checking newly issued pens against the list of recalled batch numbers, in case your pharmacy has made a mistake too.

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If you can’t trust the NHS, who can you trust…

My daughter recently passed a peanut challenge. I should have left the hospital happy and relieved that, rather than following in her big brother’s footsteps, she had escaped the shadow of life threatening food allergy. And happy and relieved was how I felt, in the main. Yet there was also something bugging me: I had been required to sign a disclaimer that the hospital food might contain nut traces.

On one hand, the hospital were saying the same as any restaurant would say: there are nuts in the kitchen and therefore we can’t “guarantee” our meals are 100% nut free. However, restaurants don’t ask you to sign a document. When eating out, there’s also usually the scope to chat through with the chef or manager what they would do to minimise the cross-contamination risk. If you don’t like what you hear, you can take your business elsewhere.

If my son has an allergic reaction resulting in a hospital stay, would I be happy for him to eat food that I had acknowledged may contain nut traces? No. He would be fine eating the hospital’s sealed juices, jellies and ice cream (and such like), which are prepacked and bear an ingredients list. However, we would have to bring in safe food for his “main courses” from home. Having your child in hospital is a stressful and draining enough time, without the additional burden of co-ordinating going home for food supplies.

What if a food allergic adult was admitted to hospital (for whatever reason, allergy related or not) and didn’t have a supportive family or friends who could bring in safe food? Would they be faced with a choice of risky food versus no food?

And shouldn’t a hospital, of all places, understand the need to feed a severely allergic child food that is free of their allergens?

I sensed a new allergy induced headache coming on…

Conflicting food labels and customer service information

Then the other Saturday, I read a Tweet from Waitrose about its Woodland Friends Easter egg hunt box, advising it wasn’t nut free. What? But there were no nuts in the ingredients … there was no “may contain nuts” warning on the pack … and hadn’t a fellow nut mum told me they were on the Waitrose list of foods suitable for those avoiding nuts? Hackles immediately up, I joined in the thread. It transpired that the Tweet had been wrong and Waitrose confirmed they WERE nut free.

Although this turned out to be a false alarm, it highlighted the importance for allergic customers of a company’s food labelling and website (or customer service channels) telling the same story.

These two incidents got me thinking about the various food allergy bees in my bonnet. Whilst I’m not by nature the militant, campaigning type, there seems to be an ever increasing list of wrongs to right in the world of nut allergy. What’s fuelling this indignation on my part? Some might say it stems from a sense of injustice that my child has a life threatening food allergy. I think there’s more to it than that. To me, it’s more about:

  • Seeing policies and customs which could (at worst) endanger my child’s health or (at best) exclude him in some way, and
  • Realising that the issues could could easily be remedied, but aren’t, because they benefit someone’s commercial interests or form part of an institution’s system.

In addition to safe hospital food and consistent allergy information, here are the other items on my nut mum manifesto:

An end to back covering may contain labels

This one hardly needs any introduction. May contain labels serve a useful purpose IF used genuinely to flag a potential risk of cross contamination during the manufacturing process. They are not helpful if used simply as a back covering measure, either where the risk is incredibly remote or where they are slapped on to every product indiscriminately.

At the end of last year, Alpro began adding “may contain traces of almonds and hazelnuts” to all of its soya products, despite planning apparently exemplary allergen controls. Tesco have now added “also, may contain nuts” to seemingly every own brand product, even including items such as orange juice, ham and prepared vegetables (sign the Petition here).

Defensive nut warning labels undermine the legitimate warnings. And if we get to the point of may contain saturation, where almost every product carries a nut warning, food shopping with confidence for your allergic child will become impossible.

Take a stand on nut allergy discrimination

In Wheeldon v Marstons, an employment tribunal, at a preliminary hearing, held that a chef’s severe allergy to nuts was a “disability” under the Equality Act 2010. It seems only a matter of time before this principle is confirmed by a higher court. Then, going forward, whether it be:

  • A restaurant refusing to make a single nut safe dish.
  • A nightclub banning EpiPens.
  • A party venue refusing to cater for an allergic child’s birthday.
  • A nursery refusing an allergic child a place.
  • A school excluding allergic children from school dinners.

… the spotlight needs to be shone on incidences of nut allergy discrimination and those found responsible held to account.

Introduce unassigned EpiPens in schools

In the US, an estimated 20-25% percent of children with peanut or nut allergies have their first reaction at school before they’ve been diagnosed. If my daughter suffered anaphylaxis, even with my express permission, the nursery or school would not treat her with one of my son’s EpiPens. They would have to call 999 and hope the paramedics arrive in time.

The US has the School Access to Emergency Epinephrine Act. Caroline Sloan has launched a campaign for EpiPens to be more widely available in Ireland following the death of her 14-year-old daughter Emma in December 2013 (sign the Emma’s Voice Petition here).

Isn’t it about time the UK followed suit?

GPs and health visitors to warn new parents of the peanut allergy risk

Given a child has a higher peanut allergy risk if they (or an immediate family member) have a food allergy or other allergic condition (such as hayfever, asthma or eczema), why don’t GPs and health visitors warn of the the associated (potentially life threatening) peanut allergy risk when prescribing blue inhalers and eczema creams to babies?

It seems that GPs are prompted by their computer at nearly every appointment to ask how many units of alcohol you consume in a week (love to know the stats on how many women say “erm, 10”, but I digress…). If the system can give this prompt, why not a “peanut allergy warning” prompt when issuing asthma and eczema medications to infants?

Are there any more?

So these are the food allergy bees in my bonnet. Do they tally with yours? Or are there more injustices out there which I’ve not yet encountered in the nut allergy world?

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I ventured into alien territory on Wednesday morning: visiting the nut butter section of a supermarket for the first time in two years. My mission? A jar of peanut butter for my 2-year-old daughter’s hospital peanut challenge.

My daughter, C, had skin prick tested negative for peanut and her blood test results had also not revealed any sensitivity towards peanuts or tree nuts. Things were looking hopeful that she might have dodged the food allergy curse. However, given the severity of my son’s first allergic reaction, the hospital had offered her a peanut challenge, just to make sure. Given she now goes to nursery one day a week, I was particularly keen to know for certain, so that she could be prescribed her own emergency meds if need be.

I had put off buying food containing the evil P-word until the day of the challenge, so that I didn’t have to keep the stuff in our nut free house. On Wednesday morning, after my son had been safely deposited at nursery, at 8.30AM I found myself scouring the shelves of our local Sainsbury’s, trying to decide whether to plump for SunPat, Skippy or Sainsbury’s own brand. It all felt rather surreal.

Sunpat Peanut Butter - Allergy

I’m pleased to report the challenge went well. Actually, I will rephrase that. Whilst my daughter didn’t show the slightest hint of an allergic reaction (hurrah!), the challenge was itself somewhat of a challenge. Little Miss took an intense dislike to the taste of peanut butter and no matter how much chocolate yoghurt we used in an attempt to disguise it, after the first dose, she knew what was coming. Hiding it under jam, on a piece of toast? No chance. This meant she had to be pretty much pinned down, whilst a blend of peanut butter and chocolate yoghurt was spooned into her mouth. It then invariably stuck to the roof of her mouth, as she refused to swallow it. Cue 10 minutes or so of protesting and drooling, until she was distracted and calm enough for it to finally be swallowed. Repeat times five. All in all, quite a wearing couple of hours.

Stress quota: likelihood of reaction vs the subject food

What was different this time round, compared to the previous food challenges we’ve been through for my son? Emotionally, two things:

  • C hasn’t ever shown any hint of being an atopic child. Despite being treated in exactly the same way as her older brother (save for not being exposed to any nut containing foods), she was rarely sick as a young baby and, save for once having a patch of dry skin on her cheek, has never shown the slightest hint of eczema. Although once prescribed a blue inhaler and montelukast, if she gets a cough it tends in the main to be croupy and gone after a couple of days, rather than something that’s chesty and needs antibiotics. I’m no medical expert, but, for these reasons, I would have been extremely surprised if she’d had any type of reaction.
  • The fact the food was peanut, loaded more anxiety onto the challenge. This was the thing which had put my son on life support when he was 20 months old. The things which cause me to shudder slightly when I see them in a jar on a pub bar or in bird feed bags at a garden centre. So, whilst I felt quietly confident that C wouldn’t react, I was all too aware of the symptoms which could be triggered if she did.

One tip for food challenges for girls…

Practically, I came away with one top tip for girls having food challenges: wear socks not tights. This isn’t something I’ve ever needed to consider for D, seeing as he’s more of a socks kind of boy! However, as the challenge got underway, it dawned on me that the hospital need to attach a monitor to the child’s toe which, for a small child in particular, needs to be held in place (and disguised so they forget about it!) by wearing a sock. Tights just don’t work for this!

… and apparently hospital food “may contain nuts”

One last thing: a new feature at this appointment was having to sign a disclaimer in respect of C’s lunch. The hospital kitchen handles nuts and they therefore can’t guarantee the food is free of nut traces. Nut allergic patients now need to sign a disclaimer to that effect.

This was a new one on me and I went along with it for C’s meal. However, if D was ever in hospital then I couldn’t risk it. We would be forced to bring in safe food from home. The absolute last thing you need when your child is in hospital is additional tasks, as the whole experience is already stressful enough. And surely, of all places, hospitals should understand the need for a food allergic’s meals to be free of their allergen(s)?

How ludicrous is it, that my severely peanut allergic child might one day be in hospital post-anaphylaxis, and the only food the hospital can offer him may contain nut traces? From chatting to other allergy mums on Twitter I understand this is commonplace across many NHS hospitals.

And so, I discover just another thing in the nut allergy world that could be easily remedied and needs to change…

Which brings me on to the nut allergy bees I have in my bonnet

Link Between Nut Allergy and Asthma View More

If so, which concerns you more – the asthma or the nut allergy? For me, my son’s peanut allergy is my main concern and I’ve tended to focus on the need to control his asthma as a way of trying to reduce his anaphylaxis risk. However, I attended a talk earlier this month which made me appreciate the importance of managing his asthma for its own sake too.

My son’s medical history

When D was around 12 months old, he was poorly every other week, with chest infection after chest infection. He was usually prescribed amoxicillin, sometimes the oral steroid prednisolone, and on one occasion we were issued with a blue reliever inhaler. One afternoon, I received a call from nursery, where his baby room key worker told me “D’s breathing isn’t right”. I remember driving down to nursery with his blue inhaler and to bring him home, with the niggling feeling that “this isn’t normal”. At that stage, we didn’t know for sure that he had asthma, as our GP told us he was too young for them to confirm an asthma diagnosis.

We then went through several months of being regular visitors to both the out of hours GP and A&E, for him to be given steroids or put on the nebuliser. He frequently missed nursery. And I was continuously having to take last minute time off work and then frantically play catch up once he was well. Until the following week, when the coughing would start again.

Despite this history, it was only after he suffered anaphylaxis to peanut at 20 months’ old, that the hospital confirmed he was asthmatic. Once he recovered from the reaction, one of the allergy team’s first priorities was “to get his asthma under control”. He was immediately put on two puffs a day of a brown “preventer” inhaler (Clenil) and, following his second anaphylactic reaction to grass last year, a daily montelukast tablet.

Since having a brown inhaler, he has rarely had a chest infection. He’s gone from being on antibiotics once a fortnight, to needing them once or twice a year. I appreciate there may be other factors at work: for example, he’s older and has built up his immunity over the past two years. However, it’s a marked improvement and I often wonder whether he should have been given a steroid inhaler earlier on. Had his asthma been under control in April 2012, his reaction to peanut might not have been quite as severe.

As a side point, one bee I have in my bonnet is the need for new parents to be more clearly warned about the risks of food allergies. Wouldn’t it be a good idea if GPs warned of the associated (potentially life threatening) peanut allergy risk whenever prescribing eczema creams and asthma inhalers to babies, and advised parents of “higher risk” babies how to go about attempting to introduce peanut during weaning?

Asthma: a life threatening condition

Of my son’s atopic conditions, I’ve always bracketed asthma with his eczema: something for which he needs medication, but in a different league to the looming threat of anaphylaxis.

At the beginning of March, I attended a Manchester Allergy Support Group meeting, where Dr Rob Niven (Consultant Respiratory Physician, Wythenshawe Hospital) gave a talk on “Advances in the Treatment of Asthma”, including, for example, bronchial thermoplasty and the development of new drugs (such as mepolizimab and various other impossible to pronounce names). As well as learning about the potential new treatments, the talk opened my eyes to the potential dangers of asthma. Dr Niven explained that someone dies of asthma every seven hours and that one of the key reasons for this is that person’s asthma is not under control. It made me appreciate that asthma isn’t “just asthma” and that it’s something to manage in it’s own right (as well as managing it, in the hope that doing so would reduce the severity of any allergic reaction).

Some good news is that the odds for outgrowing asthma are more favourable than for outgrowing peanut allergy. Apparently for children with asthma, 1/3 outgrow it, 1/3 grow out of it temporarily (only to see it return in midlife) and 1/3 stay asthmatic throughout.

Further information

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This post was originally published as a guest post for Allergy Aware Kitchen, see Biography below.

My name is Louise and I have two children, a son (aged 3 ½) who has a severe peanut allergy and a daughter (almost 2) who, touch wood, has no known allergies as yet.

The first reaction

We discovered my son’s peanut allergy the hard way. When he was 20 months old he took a bite of a peanut butter cookie. It was the first time he had knowingly been given peanut. He suffered an allergic reaction that was immediate and severe. His lips puffed up and his eye swelled shut. His breathing became loud and wheezy.

Luckily, his grandmother, a retired nurse, recognised the signs of anaphylaxis and dialled 999. The early response paramedic arrived within minutes with the life saving adrenaline injection. However, when he was taken to hospital, the doctors became concerned that the swelling in his throat was not subsiding. They made the decision to induce him into a coma, so that they could insert a breathing tube, before his throat swelled closed. He spent three days in intensive care, on a life support machine, whilst the doctors waited for signs of a “trickle” around the breathing tube, which would show them that the swelling was going down.

Fortunately, he recovered well and by the end of the week he was back home playing with his Lego and watching CBeebies. You would not guess by looking at him what he had been through. However, then began our task of learning to live with a life threatening nut allergy…

How does a severe food allergy change your life?

My son’s peanut allergy impacts on all areas of our family life. That may sound extreme: I’m not saying it dominates. However, it does add an extra layer of organisation for everyday things. For example:

  • Wherever we are and whatever we’re doing, we always have to have my son’s emergency medication to hand. On entering the world of allergies, we had to learn how to recognise the symptoms of an allergic reaction and make sure that we know the drill for what to do in an emergency (including adminstering his “EpiPen” adrenaline auto-injector). The same is true for anyone who cares for our son: babysitters, nursery, school, his friends’ parents when he goes for a playdate. They all need to be trained in what to do.
  • We have to check EVERY food label for the mention of nuts. On doctor’s advice, we avoid all types of nuts. So, if a food label mentions “peanut” or any other type of nut in the ingredients list, then my son doesn’t eat that food. We also avoid any foods which have a nut warning label (for example, “may contain nuts” or equivalent wording).
  • Going out for the day? As well as carrying his emergency meds, I need to make sure I have some safe snacks too, in case there are no nut allergy friendly options when we are out and about.
  • Choosing a school? I need to find out which are food allergy savvy and check they have safeguards in place to protect allergic children and deal with a reaction, if it happens.
  • Booking a holiday? What’s the airline’s peanut policy? Do I need a GP’s letter to carry my son’s EpiPens onboard? Does the resort have a supermarket where I can buy safe foods? Where’s the nearest hospital? Do I know the emergency number for calling an ambulance and can I report “anaphylaxis” in the local language?

Saying that, despite his peanut allergy, as a parent, I want him to have as normal a childhood as possible. Yes, we have to be careful. However, I feel strongly that his allergy shouldn’t prevent him from going to, for example, parties, playdates and restaurants. Although it may require more planning and organisation, I don’t want him to be deprived of those experiences. We just have to figure out a safe way of achieving them.

Eating out with a nut allergy

Going to a restaurant can often feel like a fairly daunting prospect. As tourists in Keswick one lunchtime, the thought of going into a café or tea room and having the “nut chat” (the conversation with the manager where I ask if they can cater for my son) just felt too exhausting a prospect. We ended up buying supermarket bread rolls and a packet of ham and sitting on a bench eating a bland, makeshift picnic.

What would have made things easier for us that day? Maybe if we had spotted a chain restaurant which had a reputation for being allergy friendly, or if one of the cafes had a sign outside saying “Dietary requirements? Just ask!”? I’m sure that would have lured us inside and we might have forked out £10 a head, rather than a few pounds between us for bread and ham.

The perfect eating out experience?

One of our first attempts at eating out post peanut allergy diagnosis was at our local Pizza Express. Having explained about my son’s allergies to the waitress, she told me that one of the chefs had a severe nut allergy, having recently suffered anaphylaxis to some soft cheese which contained nuts, unbeknownst to him. Although you wouldn’t wish a food allergy on anyone, that was music to my ears. If anyone was going to “get” the need to serve my son a nut free dish, a nut allergic chef would.

So, short of there being a nut allergic chef, here are my suggestions for restaurants as to what would happen on an ideal visit:

  • No blagging! Firstly, I should say that if you genuinely CAN’T cater, please say! I’d much rather be told “we’ve got a tiny kitchen and there are nuts everywhere” than someone say “yeah, yeah, yeah… no problem” and then serve my son something that isn’t safe.
  • Website allergy info. Wherever possible, I will research restaurants online before venturing out. My eyes will light up if I see a statement along the lines of “Please talk to us about any food allergies, full information is available”. A downloadable allergy guide, detailing which dishes contain which allergens, is also extremely useful. Although this would only cover intentionally added ingredients and I would still need to talk to the restaurant about cross contamination, the fact there is an allergy guide hints that the restaurant is alert to its allergic customers.
  • A confidence inspiring greeting. On arrival at a restaurant, my stock opener is “my son has a severe nut allergy, is this something you can cater for?”. The most confidence inspiring response I can receive to this would be “Yes, many of our dishes have no nuts in the ingredients and we are well used to cooking for people with allergies. Come in, and I will ask the manager / chef to come and talk to you.”
  • Recommending a safe option. When we talk to the manager or chef, I don’t expect them to say that every item on the menu can be made nut safe (although obviously it would be fantastic if that were the case). I think it’s perfectly reasonable to tell me, for example, “these dishes are fine, but avoid anything made on the grill”, if that’s where there’s a risk. If we’re only offered one or two nut safe options, I am grateful… even if it means my son eating pasta and tomato sauce for the 50th time running.
  • Reassure me about cross contamination! After we’ve identified a nut free meal, I need some reassurance on how that will be prepared. It’s fine to tell me “we can’t guarantee that any food is 100% nut free”. One manageress explained that whilst there were nuts in the kitchen, these were kept in sealed containers and that my son’s meal would be prepared in a separate area. I was reassured. I’m happy if you tell me (1) there are no nuts in the ingredients and (2) you understand the need to use fresh pans and utensils and everyone will know that nuts must not come anywhere near this meal.
  • Then keep reassuring me… When we get to the point of placing an order, in the most confidence inspiring restaurants, the wait staff will tell me (before I’ve had a chance to ask!) that they’ve made a note of my son’s allergy on their pad. Once our order has gone into the kitchen, I’m really appreciative when our waiter comes back over to us and says something like “the chef knows about your son’s nut allergy and that the [tomato pasta] needs to have no nuts”.
  • Nut free desserts? When it comes to ordering dessert, if the waiter/waitress recommends a nut free option without me having to ask (or even comes over and says “I’m sorry, there are no nut free dessert options”), that makes me feel like the restaurant is on the ball and is still keeping my son’s allergy in mind.

Our experiences of eating out with a nut allergy have certainly varied. All too often, on entering a pub/restaurant/cafe, we’re met with an expression of raised eyebrows teamed with puffed out cheeks then a nervous comment which tells me they’re not willing to cook for my son. We then need to search for somewhere else or my son eats a packed lunch whilst everyone else tucks into a restaurant meal.

However, on those occasions where an eatery can provide a safe meal and their service does inspire confidence, I am incredibly grateful and will go home and sing their praises on Nutmums.com and social media. That nut allergy friendly restaurant will then become a regular haunt and the place I recommend when family or friends are thinking about arranging a get together.

How things might improve from December 2014

At present, if a prepacked food or alcoholic drink contains one of the top 14 food allergens (or an ingredient made from one of them), this must be declared on the label. The “top 14 allergens” include peanuts and, separately, nuts. At present, allergen information does not have to be provided for foods sold loose and when eating out. However, this is about to change.

On 13 December 2014, the EU Food Information for Consumers Regulation will require cafes and restaurants to provide information on food allergens. This could be done in writing (for example, on a menu or a blackboard) or the information could be given verbally by a member of staff. So, if I go into a restaurant, they should either be able to tell me which dishes contain nuts as an ingredient, or point me to where the allergen information is written down.

Whilst the new rules are an improvement in that restaurant staff will not be able to simply shrug and claim not to know what a dish contains, they unfortunately only cover ingredients which have been intentionally added to the recipe. They do not cover accidental cross contamination. So a restaurant will still be able to say “that pizza doesn’t have any nuts in the ingredients… but our kitchen is tiny and there are nuts everywhere!”. We will still have to have the “nut chat” on arrival, to seek some reassurance that they understand cross contamination.

Even without addressing cross contamination statements, the new regulations mean all cafes and restaurants are forced to think more about allergens, and therefore hopefully in turn become more allergy aware generally. I think a likely key factor in the legislation’s success is the extent to which consumers demand the allergen information to which they are entitled. If we report those restaurants who continue to meet requests for allergen information with a shrug and a “dunno”, then standards are likely to improve.

In summary? The new rules are a welcome step in the right direction to make eating out with an allergy a safer, and therefore more relaxing, experience.

Biography

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Here’s a brief overview of my children’s allergies. My son, D (now almost 3 ½) has a severe peanut allergy, plus asthma, eczema and various environmental allergies (cat, dog, grass and house dust mite). My daughter, C (almost 2), has no known allergies as yet, although following a recent bug she was prescribed a blue “reliever” inhaler and put on a daily dose of montelukast.

Last autumn, C began attending nursery one day a week. During an initial conversation with her room supervisor, it became clear that, even with my express permission, they could not use D’s medication on C, if she suffered her first allergic reaction whilst at nursery. If C suffered anaphylaxis, they would need to call an ambulance and wait for the paramedic to arrive to administer the adrenaline (see Isn’t it time UK nurseries and schools held unassigned EpiPens?).

D’s allergies, asthma and eczema put C in the higher risk bracket for peanut allergy (see Allergy testing siblings). According to a 2008 study, the fact D is peanut allergic means C, as his younger sibling, has a “12-fold increased risk for peanut allergy”.

The upshot? I was extremely keen to have C peanut allergy tested, so she could be prescribed her own emergency medication, if need be.

Obtaining a GP referral

At D’s last allergy appointment, I raised this with our allergy doctors and they agreed that C would be tested. However, I first needed a GP to refer her to the allergy clinic. So off I trotted to our doctors, expecting that I may need to plead for a referral. There was no begging required. The GP happily processed the referral and, earlier this month, we went to the hospital for C’s first allergy appointment.

D & Family, the day he was released from hospital

Skin prick test negative, as expected

I’m pleased to report that C skin prick tested negative for peanut (hurrah!). We discovered D’s peanut allergy when he had anaphylaxis when C was only 4 weeks’ old. Our house has been a nut free zone ever since and all of us have avoided eating nuts. So C has never even eaten anything which “may contain” nuts, let alone something that has nuts in the ingredients. Our allergists were therefore fully expecting C’s skin prick test to be negative.

According to Dr Andrew Clark (in a 2010 Q&A piece for Mumsnet), following a negative skin prick test result, there is a 95% chance that the sibling, who had never eaten peanut, would not react to eating it for the first time. So despite the negative result, it is still possible that C might react in years to come if she ever eats peanut.

What happens next?

Our hospital are now arranging for C to come in for a food challenge, where she will be fed peanut butter in increasing doses, to confirm she does not have an allergy.

I was relieved to hear that, if C passes the food challenge, our doctors would not then recommend that she should eat peanut on a regular basis. My understanding is that, if C passes the challenge, it would not be a case of her needing to maintain a “tolerance” to peanut. If she’s simply not allergic in the first place, she could then eat as much or as little peanut as she chooses.

Our doctor remarked that, if C sailed through the food challenge, I wouldn’t then, for example, have to take the same precautions for C at birthday parties, as I would for D. I hadn’t really considered that aspect before. Although I know that D will need to learn to be careful about what he eats and to always carry his medication, hopefully, growing up, he won’t be TOO aware of the precautions (and associated parental anxiety) that happen behind the scenes, as we prepare for school, play dates, parties, eating out, holidays and so on. However, the doctor’s passing comment brought it home to me for the first time how different it will be parenting each of them on the food front, going forward.

Update (April 2014): I’m very pleased to report that my daughter passed her peanut challenge and so has avoided having a peanut allergy like her big brother. See How peanut butter found its way back on my shopping list.

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Anaphylaxis detectives: case closed

My son has had two anaphylactic reactions. His first, when he was 20-months-old, happened when he bit into a peanut butter cookie. It was his first known exposure to peanut. The allergic reaction was immediate and severe and resulted in a four day spell on the intensive care ward. Cause? Peanut.

The second reaction, in May this year, was not so clear cut. It was a hot summer’s day. He was playing in his friend’s garden. I slathered him in sunscreen. He ate some (supposedly nut free) snacks. The allergic reaction began with a rash and hives. He then got extremely upset and began clawing at his neck and pulling his ears. His face and tongue appeared swollen. Finally, he started coughing. I used the EpiPen. The reaction stopped. He was kept in hospital for 24 hours, purely as a precaution. Cause? Unknown.

We’ve now had challenges at the hospital in respect of the sun tan lotion and the biscuits and crisps he ate that morning. He passed them all.

Shortly after the second reaction, the hospital carried out skin prick tests for various environmental allergens and we discovered he was sensitised to grass, cat, dog and house dust mite (HDM). Our doctors have now concluded that the main cause of the second anaphylactic reaction was likely to be grass.

Before this latest spate of hospital appointments, I personally had no clue that a grass allergy could provoke such a severe reaction. However, I understand from our doctors that some children have been in intensive care following reactions to grass. For us, it is now a case of watching and waiting to see if he has another reaction. In the meantime, we need to reduce D’s exposure to his environmental allergens wherever we can. This will hopefully keep his “allergy cup” as empty as possible, and avoid it overflowing to the point where he has a reaction. I’ve set out below some of our doctors’ tips for reducing D’s exposure to grass, pets and HDM.

What is montelukast?

Following the second reaction, we had to start giving D a daily dose of both anti-histamine and montelukast. 

I hadn’t heard of “montelukast” before we were prescribed it. I understand that it is also known as “MSD” or the brand name “Singulair”, and the NHS Choices website states:

“In asthma, Singulair relaxes the air passages of the lungs to make breathing easier and to help prevent asthma attacks…

Singulair also reduces your body’s response to allergens and to certain situations which trigger asthma attacks. In this way it can help prevent asthma which is triggered by exercise. In people with asthma it can also help relieve the symptoms of seasonal allergic rhinitis.”

D has montelukast chewable tablets now. However, we started off with montelukast sachets, which need to be mixed in with food. At first, I stirred the sachet of granules into a pot of yoghurt and then spent the next half hour trying to cajole D into finishing off the yoghurt, so I knew he’d taken his medicine. I then realised this was a bit of a school girl error and it’s easier if you put a spoonful of yoghurt in a separate pot and stir in the granules, so he then only needs to be persuaded to have the one spoonful to get the dose. 

Grass allergy

Hearing that D had had an anaphylactic reaction to grass initially made my head spin: how do you even start avoiding grass? The answer is, with great difficulty. Grass pollen season tends to be from end of April to early October, with the pollen levels peaking between late May and early July. The tips we were given for grass allergy management included:

  • Keeping D’s bedroom window closed at night.
  • Keeping the windows closed in the car.
  • Not letting him play on freshly mown grass.
  • After he’s played outside on the grass, to wash his clothes and give him a bath to wash the pollen off his body and out of his hair.
  • Avoiding drying his clothes and bedding outside, when the grass pollen levels are high.

Aside from that, it’s a case of hoping that the daily dose of anti-histamine and montelukast keep things under control.

Cat and dog allergies

We keep D away from cats where possible and don’t let him pet them when visiting friends and family.

We’ve got a 7-year-old beagle. He was part of the family before D arrived and, until the skin prick tests this summer, we had no idea that D was sensitised to him. However, our doctors’ view is that Bailey will be aggravating D’s asthma. We’re not searching for a kindly relative to take Bailey on just yet, as we’re trying to control D’s exposure to him in the following ways:

  • As there’s no such thing as a hypoallergenic dog (see Mayo Clinic, Are there any hypoallergenic dog breeds?), we need to bath our dog regularly (ideally weekly).
  • We keep the dog downstairs, out of bedrooms and definitely off beds.
  • We try not to let Bailey lick D.
  • We should go for wooden flooring wherever possible and regularly shampoo any rugs and carpets.

House dust mite allergy

Revolting things, house dust mites (HDMs). They live in your bedding, carpet, curtains, soft toys and clothes, and feed off your shed skin. The thing which triggers an HDM allergy is the protein in HDM faeces. How lovely.

HDM allergy can be a problem year round and apparently the UK has the perfect climate for them. The tips we were given for controlling the triggers include:

  • Having wooden floors instead of carpets (luckily we had this already).
  • Regularly hoovering D’s mattress. I haven’t tried this myself, but a friend of mine from the Manchester Allergy Support Group swears by regularly steaming her mattress using a wallpaper steamer.
  • Washing bedding weekly at 60 degrees. (You need it to be hot – washing at 40 degrees won’t kill the HDMs).
  • Investing in a pillow and mattress protector. Although you can get duvet protectors too, I’ve heard they can feel a bit like sleeping under a crisp packet! So I’ve decided to stick to just hot washing my son’s duvet and blanket. The pillow and mattress protector I purchased from Allersafe are pictured below.
  • Keeping soft toys on the bed to a minimum. I’ve weaned my son down to just his beloved Monkey, who is washed fairly regularly (Monkey is definitely slimming down…). Our doctors also suggested putting soft toys in the freezer overnight to kill off any lurking HDMs.
  • Opening the window whilst hoovering D’s bedroom.
  • Wiping his bedroom surfaces with a damp cloth (rather than using a dry duster, which just sends the dust up into the air rather than removing it).

Allersafe bedding

Further reading

Allergy UK leaflet, Four Seasons

The North West Allergy & Immunology Network has a series of paediatric patient allergy information leaflets, including leaflets on:

 

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Allergy UK today issued a news flash that certain batches of Jext adrenaline auto-injector are being recalled due to a manufacturing fault.

The news flash states that:

“…the affected batches were dispensed to patients from 8th May 2013 in the UK.

Routine testing has revealed that during the production process the needle may have become bent, causing the needle to curl up inside the injector housing upon activation and consequently causing the pen not to deliver the required adrenaline dose.”

For full details (including a full list of the affected batches), see the Allergy UK announcement.

Reading the announcement made me go cold. Earlier this year, Macclesfield Hospital (as part of the North West Allergy and Immunology Network) switched from prescribing EpiPens to prescribing Jext pens. So, at present, it’s a bit of a mish mash for us. We have two EpiPens and one Jext pen for home use (all nice and confusing for babysitters…). Whereas D’s nursery have Jext. Fortunately, the “home” Jext pen did not come from one of the batches affected by the current recall. I shall find out tomorrow whether the emergency medication that nursery hold is affected.

How horrendous would it be though, if D had an anaphylactic reaction at nursery and the auto-injectors didn’t work?

This news is a wake up call which:

  • Underlines the importance of always having TWO adrenaline auto-injectors to hand.
  • Highlights the need for UK nurseries and schools to hold unassigned adrenaline auto-injectors. A “spare” pen held by the school would, in all probability, come from a different batch to a pupil’s own prescribed pen. So, if an adrenaline auto-injector failed due to a manufacturing fault, hopefully the school’s unassigned pen would not have been affected by the same problem.

Petition for UK schools to hold unassigned adrenaline auto-injectors

Joanne Keeling (author of Izzy and Ollie Adventure in an Ambulance) has started a petition calling for UK schools to follow the USA’s lead and hold unassigned or “stock” EpiPens (#StockEpiUK on Twitter).

Please sign it, and share the link

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What essential kit do you carry around with you each day, to:

  • Ensure that you are prepared for an anaphylaxis emergency; and
  • Minimise the chances of your child having an allergic reaction in the first place?

I thought it might be helpful to share the contents of my “essential allergy kit” (see photograph). Here’s what I carry around each day, and why:

EpiPen Jr x2

Following his anaphylactic reaction to a peanut cookie, my son D was prescribed three adrenaline auto-injectors. We were initially prescribed EpiPen Jr. Our hospital have now switched to presecribing Jext pens. So we currently have two EpiPen Jrs and one Jext pen. Both contain the same dose of emergency adrenaline, appropriate for D’s weight (150 micrograms). The pens have slightly different administration techniques, so to minimise confusion in an emergency, we keep the Jext pen at home and the two EpiPens with the “out and about” emergency medicine kit that we take everywhere.

Both EpiPen and Jext have excellent websites, with videos showing how to administer the injection. See:

We carry TWO EpiPens, as D’s emergency action plan states:

“If he still has difficulty breathing or is very faint 5 minutes after the first dose of Jext pen [or EpiPen] and the ambulance has not yet arrived then if available a second dose should be given in the opposite leg”.

It is also reassuring to have a backup EpiPen, in case there is a problem when trying to use the first pen.

Blue asthma “reliever” inhalers x2

As D has asthma, his personal anaphylaxis action plan states that, after being given the EpiPen, he should be given up to ten puffs of his blue inhaler. I carry a spare, just in case the first blue inhaler decides to run out just when it’s needed.

Spacer device

Given he’s only three years old, we give D his asthma inhalers via a spacer advice. We have a Volumatic spacer device at home. However, that’s quite bulky to carry around (and seems like it might crack if squashed), so we use an AeroChamber Plus when we’re out and about.

Anti-histamine medicine

Our emergency medicine kit includes a bottle of Loratadine (D’s prescribed anti-histamine), for use if – as stated in his personal anaphylaxis action plan – he shows symptoms of a mild allergic reaction (or to be given after the EpiPen and inhaler, if he suffers anaphylaxis).

Medicine spoons and medicine dropper

I carry both spoons and a dropper. However, I personally think the dropper would be easier to use in an anaphylaxis emergency.

Emergency action plan & “To whom it may concern” letter

Both of these were provided by the hospital. The emergency action plan sets out the symptoms of a “mild to moderate allergic reaction” and “anaphylaxis (severe allergic reaction)” and details the steps to take in each case. It also includes diagrams showing how to administer the adrenaline auto-injector.

The “To whom it may concern” letter lists the emergency medication D has been prescribed. The paramedics referred to this when D had an anaphylactic reaction back in May.

Mobile phone

Before having children (and certainly before entering the world of food allergies), I was sometimes guilty of zooming out of the house without my mobile (or with a mobile on the brink of running out of power). In fact, it was only when I was eight months pregnant with D that I was persuaded to finally make the switch from a pay-as-you-go brick to an iPhone on a monthly contract…

Nowadays, the thought of needing to call an ambulance and not having my mobile to hand makes me go cold. So a charged phone is part of our emergency kit.

My glasses

Sounds daft, but I can’t read food labels without them!

Safe snacks and a drink

My usual safe food supplies include a banana, a packet of Organix rice cakes and a Robinsons Fruit Shoot. If we’re heading to a playgroup, I now throw in a Fabulous Bakin’ Boys cupcake or muffin too.

Wipes – Dettol, Milton and Johnsons

For me, it tends to be:

  • Dettol wipes for large surfaces (cafe tables etc).
  • Milton wipes for things he might pick up or touch (so grubby looking toys, sticky hand rails and, since this week, playgroup musical instruments!).
  • Johnsons wipes for hands and faces.

I can’t pretend that’s a scientific approach, just the habit I have fallen into!

An empty carrier bag

Useful if there’s a reaction and you need to bag up the suspected food item.

Eczema creams

For if there’s a flare up when we’re out and about. It’s also the thing I missed when we found ourselves at hospital after D’s second reaction. We were prescribed another tube on the ward, but it would have been handier simply to have had the supplies ready in my bag.

… And finally a bag to keep it all in

As you will see from the above photo, I keep our emergency medical kit (EpiPens, inhalers, spacer, anti-histamine, spoons, dropper, hospital paperwork) in a large MedPac. We bought ours from www.medpac.co.uk and I see they’ve since brought out an insulated version too. For details of other websites selling EpiPen cases, pouches and holders, see EpiPen accessories.

 

Do you carry anything else in your “essential allergy kit”? Do let me know if there’s anything you think I’ve missed!

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I’ve written previously about the dangers lurking at mums and tots groups for food allergic children. From the snacks served, to impromptu parties and surprise birthday cakes, the seemingly harmless staple of the toddler social scene can be a fraught experience for the food allergy mum.

This morning, I discovered another playgroup peril. The mouth-blown musical instrument.

We were finishing “tidy up time”, when the box of musical instruments came out. Set in the middle of the floor, twenty toddlers dive in, in a frantic bid to be the one who has the cymbals. Normally, there is no consoling D if he doesn’t have the cymbals. I may as well give up there and then and head home.

Today was different. Today, a selection of new instruments had been added to the box. Today, D emerged from the scrum blowing into a plastic yellow recorder.

After a split second thinking “what an irritating noise”, it dawned on me that sharing recorders really wasn’t the best plan for a child with a severe nut allergy. I grabbed it off him and wiped it, even though had there been any peanut butter traces from the last child musician on the mouthpiece, that really would have been too late.

Just another thing to be aware of, although I’m not sure what I’m going to do about this one. Buy my own pair of cymbals for D’s exclusive use? Leave before the singalong? Join in the toddler scrum to make sure he doesn’t grab the recorders?

For more information on unexpected hazards at playgroups and school, see the Kids With Food Allergies website, which has an excellent table detailing Potential Food Allergens in Preschool and School Activities and Crafts.

What unexpected food allergy hazards have you encountered at playgroup and school? I would love to hear from you!