The Allergy Mums Club is all about allergy parents learning from each other’s experiences. Here Rebecca Bull from Allergies In a Nutshell shares the key things she has learned since her 3 year old daughter was first prescribed an adrenaline auto-injector (AAI) for a severe peanut allergy.
Of course, a parent’s view cannot replace professional medical advice. But, there are so many practical tips that are picked up from day to day experience. These are best learned from someone who has lived it. Rebecca covers topics such as storing and transporting AAIs, training your child and others to use their AAI, and keeping on top of expiry dates. She also shares where to find further support and information.
About the author: Rebecca Bull is the mother of a three year old with a peanut allergy. She is also a trained journalist with a degree in Biochemistry.
You can follow her on Instagram @allergies_in_a_nutshell
Please note: The information in this article has been researched to provide accurate information to the best of our knowledge but it is not intended to substitute professional medical advice. It is important to seek medical advice relating to your child’s specific needs.
A Parent’s Guide to Adrenaline Auto-Injectors
When your child is first diagnosed with a food allergy there can be a lot of information to take in and it can be overwhelming.
But with time, building your knowledge about food allergies can help you feel more confident about managing their allergy and keeping them safe.
Even with a severe food allergy your child can live a full life. It all starts with informing yourself. This article is designed to help answer some of the questions you may have about one of the most crucial parts of managing a severe food allergy – using an adrenaline auto-injector.
What is an Adrenaline Auto-Injector?
An adrenaline auto-injector (AAI) is an injection device that is pre-loaded with adrenaline and designed to be used to treat severe allergic reactions called anaphylaxis. There are three main brands of AAI prescribed in the UK: Epipen, Jext and Emerade.
Anaphylaxis causes symptoms such as swelling and tightening of the airways and a sudden drop in blood pressure which can make the patient dizzy and cause them to collapse.
Anaphylaxis is a potentially life-threatening response. It usually occurs within minutes of being exposed to a trigger like an allergen but it can be delayed by hours.
It can worsen rapidly and in rare cases it’s fatal. Adrenaline (also known as epinephrine) is the first line of treatment for anaphylaxis because it works quickly to open up the airways, reduce swelling and raise blood pressure.
Who is prescribed an Adrenaline Auto-Injector?
Adrenaline auto-injectors are prescribed for individuals who are at risk of anaphylaxis.
This risk should be determined after proper assessment by an allergy specialist who will consider the patient’s risk factors.
Guidance from the British Society for Allergy and Clinical Immunology (BSACI) advises on when to consider prescribing an adrenaline auto-injector.
For example, they advise considering prescribing an auto-injector if the trigger for anaphylaxis is a food item which isn’t easily avoidable. Additional risk factors like asthma also mean a patient is more likely to be prescribed an auto-injector even if they have had a mild allergic reaction.
However, patients who experience anaphylaxis caused by medication may not be prescribed an AAI because the allergen is easily avoided.
AAIs come in different doses and the dose prescribed depends on the patient’s weight and the brand of AAI. In general, those below 25 to 30kg (usually those under 6 years old) are prescribed a 150 microgram dose and those above this weight get a 300 microgram dose or higher. It is worth being proactive about monitoring your child’s weight. Make sure you have plenty of time to organise getting a new prescription when a higher dose is needed.
According to NICE guidance, patients who are prescribed an AAI should always be given two to carry with them at all times. This is in case one fails to work due to a manufacturing defect or being used incorrectly, or in case more than one injection is needed to counteract the patient’s symptoms.
When your child is prescribed an AAI, make note of the expiry date. Set a reminder to request their next prescription in time.
In addition to setting your own reminder, on your phone for example, you can also use an Expiry Alert Service which each of the AAI brands provide. It is a good idea to have two reminders in case you miss one.
You may want to make your request a month or so before your expiry date. Your local pharmacist can advise you how far in advance you need to order your child’s AAIs.
Once your child has their initial prescription from an allergy specialist, your GP will be able to provide subsequent prescriptions for you to then obtain your child’s device from your pharmacist.
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When should you use an Adrenaline Auto-Injector?
The allergy specialist who prescribes your child’s AAI should put together an allergy action plan that is specific to them and explains when and how to use their device.
The allergy action plan will highlight signs of an allergic reaction as follows:
Signs of a mild to moderate reaction:
- Swollen lips, face or eyes
- Itchy/tingling mouth
- Hives (a raised red rash) or itchy skin rash
- Abdominal pain or vomiting
- Sudden change in behaviour
As soon as you spot such symptoms be sure to follow your child’s action plan and look for signs of a severe allergic reaction or deterioration.
Signs of anaphylaxis/a life threatening reaction:
- Airway: persistent cough, hoarse voice, difficulty swallowing, swollen tongue
- Breathing: difficult or noisy breathing, wheezing or a persistent cough
- Consciousness: persistent dizziness/pale or floppy, suddenly sleepy, collapse, unconscious
As soon as you spot signs of a severe reaction use the AAI by following the steps outlined below.
IF IN DOUBT GIVE ADRENALINE
The symptoms of an allergic reaction are not always consistent and may not be the same each time a person has a reaction.
So if you are in doubt about whether to use the AAI it is best to err on the side of caution and use it because anaphylaxis can come on rapidly and can be fatal. Adrenaline on the other hand is considered safe.
How should you use an Adrenaline Auto-Injector?
It is important that the allergy specialist who prescribes your child’s device shows you how to use their specific device.
In general, this is how you use an AAI. However, there may be small differences between brands so it is important to follow the specific advice for your child’s AAI.
- Hold the device in your dominant hand by making a fist round it.
Tip: Hold the AAI like a javelin.
- Take the lid off (a blue lid for the Epipen and yellow for the Jext AAI)
- Inject the needle end of the device (at the opposite end of the lid in the case of Jext & Epipen) into the middle of the outer thigh. The device should not be injected into any other part of the body but it can be injected through clothing.
- Listen for the clicking sound which will let you know that the needle has been deployed.
- Hold the pen in place for however long is stated for your specific brand of AAI.
Tip: You can also look for other signs the injection has occurred, such as a spot of blood.
- Lightly massage the injection site.
- As soon as you have administered the adrenaline call 999 and state “anaphylaxis” (pronounced ana-fill-axis). Do this even if they start to improve. Calling an ambulance after using an AAI is important. Adrenaline is a short-acting drug and is only designed to buy you time to get to hospital.
- Get your child to lie flat with their legs raised, but if they are having difficulty breathing then slowly sit them up. Return to a lying position as soon as possible. Be mindful to avoid sudden changes into an upright sitting or standing position as this can cause the blood pressure to drop.
- If there are no signs of improvement after five minutes give a second injection. It is sensible to do this in the opposite thigh to the first injection although this is not yet official guidance. This is because when you inject adrenaline in the thigh the blood vessels constrict. If a second injection is administered in the same thigh, where the blood supply may be reduced, the medication may be less effective.
It is important to call an ambulance after using an AAI so the patient can go to hospital for further observations and possible treatment with medication like steroids.
In some cases, patients may have a biphasic reaction which is where they have another reaction hours later.
Practise, practise, practise
You can order a trainer device online directly from the manufacturer’s website.
The trainer device does not have a needle or medication and is a useful way of practising how to use the AAI so it becomes second nature.
Tip: Use your trainer pen to get a feel for the amount of pressure you need to apply in order to hear a clicking sound.
You may go years without having to use it which is why it is important to refresh your training. You can set a reminder to practise with your trainer pen every couple of months for example.
Training others to use adrenaline auto-injectors
Anyone who ever cares for your child in a school or nursery setting for example should know how to use your child’s AAI.
It is a good idea to train close friends and family so they know how to use your child’s device even if you don’t plan on leaving your child with them.
If they have older siblings who are old enough to administer the treatment then train them up too.
Teaching your child to use their AAI
As soon as you feel your child is responsible enough to understand how to use their device then teach them how to do so.
It can be difficult talking to your child about their allergy but it is important for them to have a level of understanding that is suitable for their age. Even at a young age it is worth them knowing that their allergen makes them sick and that their medication is there to make them better. Details that may scare them or they may not understand are not necessary.
You can use the following to help them remember how to use their device:
Rhyme to help with Epipen use
Orange to the thing, Blue to the sky
Hint to remember how to use Jext
Yellow to the sun, black to the thigh
Storing their AAI and taking it out and about
Because anaphylaxis is time critical, your child’s AAI should always be immediately accessible no matter where they are.
It is useful to have a pouch or bag to store their device along with any other medication.
The website Allergy Lifestyle has a range of bags designed for storing medication. They have bags in various sizes which are insulated so the medication is kept at the right temperature.
Adrenaline is temperature sensitive so it is recommended that you keep it below 25 degrees to prevent it degrading. In summer, you can use a Frio Wallet to store your device when it is hot. The wallet helps to keep it below 25 degrees for several hours.
Be sure to read the specific storage advice for your device.
You can inspect your child’s AAI through the clear window for signs it has degraded. The liquid should be clear. If it shows signs of discoloration or particles appear then this may be a sign that the adrenaline has degraded.
Always make sure you carry two devices in case you need to administer more than one shot of adrenaline or if one device misfires or is used incorrectly.
Adrenaline Auto-Injectors at school
Starting school can be a scary time if you are the parent of a child with an allergy but with preparation your child can be kept safe and still feel included.
It is important to do as much preparation as you can beforehand to make sure your child’s school is well set up to look after your little one and understands how to keep them safe.
Part of this means making sure staff understand how to use your child’s specific auto-injector and they know how to follow their action plan. In particular, make sure their class teacher fully understands their allergy and that there is always an adult around to observe them at meal and snack times and administer their medication if necessary.
Make sure their device is stored somewhere where it is instantly accessible and that it is not locked away.
Allergy UK has worked with allergy groups in the UK to put together a model policy to help schools keep children with allergies safe. It is a useful resource to help your child’s school provide the gold standard in managing allergies.
The Allergy Team also has plenty of useful information to help parents and teachers keep children safe at school.
As your child grows older they can take on the responsibility for looking after their device and it is worth teaching other children at their school about it too. Teaching their friends about their allergy and medication can also mean there are others looking out for them too.
Since 2017, schools have been legally allowed to purchase spare pens directly from a pharmacy without a prescription to use in case of an emergency. The Spare Pens in Schools website has useful information to help with this.
Where to find support
There are a number of free support resources available to help parents and carers of children with allergies, including helplines and support groups.
Specific organisations which can provide further support about AAIs and analphylaxis include: