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If your child suffers anaphylaxis, don’t you need to be one of the first to know?

Introducing the Alert 5 smart phone app

I have recently received details of Alert 5, which is a new app that could prove invaluable in the event of an anaphylaxis emergency.

What does the app do?

With a single tap, the app can be used to tell up to 5 people:

  • That the allergic person has had a severe reaction.
  • The exact location on a map of the person suffering anaphylaxis.

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If the alert is being sent to:

  • A mobile, then a text message is sent, explaining the sender is having a reaction. The message includes a 20 character URL, which links to a detailed map pinpointing the sender’s exact location.
  • A landline, the text message is read out.

An allergic child with their own mobile phone can therefore alert their parents, brother, sister etc that they are experiencing a reaction.

The stored numbers are easy to amend, so you can set different numbers for different times of the day. You might, for example, include the school office number during school hours, but change this to something different at weekends.

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Recipients need to know the drill

For the system to work well, the key is that the recipients of the message know:

  • That the alert will only be sent in the case of an emergency.
  • The agreed plan of action when an alert is received. This would differ from family to family. For example, it might be down to the parents to head off immediately to find the child. The other 3 recipients might check that the parents have received the message safely and be on hand to help with other children.

Handy for parents’ phones too

The app could also be useful for parents to download onto their own phones too. My son, at 4, is (I hope) some way off demanding an iPhone. However, by having the app installed on my mobile I can let my partner and, for example, his grandmothers know that he has had a reaction.

When my son had his second anaphylactic reaction, my sole focus was on administering the EpiPen, giving his inhaler and anti-histamine and keeping him calm. I didn’t have the time or the brain space, whilst in the thick of it, to phone my partner (much less other family members) to let everyone know what had happened. Luckily, on that occasion, a friend was there to make the calls. However, had I been by myself and subscribed to Alert 5, I could have tapped my phone and sent out the distress signal. Ian would have known to come and find us. D’s grandmothers would be alerted to the fact he has had a severe reaction. They could double check that Ian had received the alert and could, for example, be getting ready to head over to our house.

The information screen

The app also allows the sender to press a button to display an information page on your phone, or iPad etc, which would let those around you know what they can do to help if you are too unwell to explain. For an allergic child, the information screen could detail the child’s allergies and let readers know where their EpiPen can be found.

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Key message: (1) adrenaline (2) call 999 THEN (3) use app

My main concern when I heard about the app was that someone might waste valuable time in an anaphylaxis emergency rummaging for their phone, when what they need to do first is administer adrenaline and dial 999. When I put this to one of the app’s founders, Lee Henderson, himself a former fireman, he agreed completely: for anaphylaxis emergencies the app is an additional step for AFTER adrenaline has been given and an ambulance called. What the app does is to provide added peace of mind.

How Alert 5 could work in an anaphylaxis emergency

It’s easy to imagine scenarios where the app would come into its own:

  • Your child is at the park with friends when s/he has anaphylaxis. The EpiPen is given, the ambulance is called and the friend presses the help button so you can get to the scene.
  • Your secondary school aged child is at the far side of the school playing field. They have a reaction: hopefully they have their EpiPen with them. If not, if the staff room number was stored in Alert 5, valuable minutes could be saved by pressing the button for help.
  • Your teenager is on a night out. It won’t remove your worry but at least you know they have a simple way of telling you if they have a reaction.

How the technology might evolve in future…

Calling an ambulance at the touch of a screen

I understand that Alert 5 are talking to police and ambulance services about a direct link between the app and the emergency services. If this development goes ahead, the alert button would both call an ambulance and let your 5 emergency contacts know.

Solving the problem of a locked phone

Another concern I had was if the child’s phone was lockable. Would their friends need to know their pin to be able to send the alert? Was there any way the app could override the locking, so someone else could summons help?

Whilst the company make a special “defender phone” which has an emergency button to override the phone’s lock, this product is more suitable for companies to buy for their lone workers, and likely too expensive for individuals. However, Alert 5 are looking at the issue of locked phones to see whether there is a way the app could override the lock with a combination of button pushes. For Android phones, they are also seeing whether there could be a means of overriding the lock if it is shaken for three seconds. I understand that if these upgrades do take place in future, then Alert 5 subscribers will get the benefit of them within their £4.99 pa subscription.

How much is Alert 5 and where can I get it?

Alert 5 costs just £4.99 per year and is available for both iOS devices (iPhone, iPad etc) and Android phones. You simply go to your app store and download it by searching for “Alert 5”.

For me, provided everyone understands it is an action to take AFTER adrenaline has been administered and the ambulance is on its way, £4.99 a year for an added layer of reassurance is well worth it.

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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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Today’s allergy mumpreneur sharing her story is Sarah, mum to 2-year-old Riley, who is dairy and egg intolerant. Sarah founded Allergy Buddies after another parent gave Riley milk chocolate at a party, not realising it would make him ill. Allergy Buddies sells clothing, stickers, badges, keyrings, jewellery and more, all illustrated with the different “Buddies” and with the aim of alerting people to your child’s allergies/intolerances.

Hi Sarah. Thanks for talking to me about your son’s food intolerances and Allergy Buddies. Let’s start with Riley. How did you discover he was intolerant to egg and milk? What were his symptoms and were his food intolerances difficult to diagnose at first?

Hi and thank you for having me. Riley started with a simple cold that lasted forever. Then we had the most awful sickness and diarrhoea for pretty much 6 weeks. He would eat and be sick within 20 minutes. Every night he would wake about 1 and scream in pain from his tummy until he managed to go to the toilet. Most nights it was 3 hours of tears from all of us! After lots of visits to the doctors and being told it was a ‘virus’ something suddenly just clicked and I thought all he wants to eat is porridge or yoghurt (his throat was also swollen). So Lactose free we went and in 24 hours the difference was unbelievable. Then 4 weeks later another ‘cold’ and we started all over again. No messing that time and onto a soya diet he went.

Some readers will be dealing with egg and milk allergies or intolerances, alongside nut allergies. Do you have any favourite “free from” egg and milk brands or products?

We pretty much try anything that is ‘free from’ that I think might appeal. But the best finds are by far the unexpected. Like chocolate bourbon biscuits (cheap ones)!!! I’d never looked at them until someone in my support group mentioned it!  Also we have found that Hovis Best of Both bread is a godsend as 1 slice has as much calcium in as a soya yoghurt!

Tell us what happened at the Christmas party, which inspired you to found Allergy Buddies.

allergy_2It was a pretty honest and simple mistake but still terrible for us. I knew there would be things to avoid but I was determined not to let Riley miss out. I had heard them say they were doing hunt the chocolate but knew they were in wrappers and so I let him collect a couple putting in his bag for later (that I would swap when we got home). We were doing so well and he was so good about it as he always is. The game was over so I let him go play again. 5 minutes later he came up to me eating chocolate. I was horrified. It was our first trip out where there was food and our 1st good week in nearly 4. So bundled him in the car and managed to get him home before the sickness started again. It was that night when I was comforting him I realised it wasn’t us we had to worry about it was others. So I started to look for something he could wear and I realised there was room for a new brand. And the rest they say is history.

I read that your products can be tailored to particular allergies and intolerances. So would it be possible, for example, to have a keyring made saying “EpiPen and Inhaler in my bag” or “No nuts, egg or dairy”?

Yes we can customise to pretty much whatever you want. If we have the buddies created they can be put together in any combination to meet the needs of our customers. We also can do text only products where a buddy might not be suitable.

Thanks so much for sharing your story, Sarah!

Contact details

Further resources – food intolerance

If you would like to know more about food intolerance (and how this differs from a food allergy), please see:

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I recently read an article on ABC News about a new range of “Don’t Feed Me” t-shirts, on which parents could tick off the foods to which their child is allergic. The t-shirts are aimed at children under five, who aren’t yet able to communicate their allergies or to read. By wearing the t-shirt, for example to nursery, a party or with a new babysitter, the child’s carers will be reminded about which foods are off limits.

It seems that many allergy parents are fans of these types of t-shirts. However, the jury is still out on this in our house. My son (D) is now 2 1/2 and hasn’t yet started going to playdates or parties by himself. He is either cared for by his dad and I, nursery or his grandmothers, all of whom are fully aware of his allergy and the foods to be avoided. He won’t be going to a playdate or party by himself unless (1) we were confident that the parents hosting were aware of his allergy and knew how to keep him safe and (2) ideally also that D can communicate for himself that he cannot eat nuts.

Dr Wayne Shreffler voices the concern in the ABC article that the t-shirts could act as “bully magnets” and, once the children are old enough to read, I think this is a fair point.

So, at the moment, I’m unconvinced. However, I may well change my tune over the next couple of years, and if I do, I will certainly keep you posted. In the meantime, if you are thinking of giving allergy t-shirts a go, here are some websites I have come across which you may find useful:

Further resources

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Following his anaphylactic reaction to a peanut cookie at 20 months old, D was prescribed the following medication:

  • Epinephrine (adrenaline) auto-injector (EpiPen).
  • Beclometasone “preventer” inhaler.
  • Salamol “reliever” inhaler.
  • Antihistamine medicine.

We were given three junior EpiPens and two of everything else. One of our first tasks when D came home from hospital was to decide (1) where to keep his emergency medication and (2) what to keep it in. Continue Reading