Fatal reactions to food are thankfully, incredibly rare. Despite a marked increase in recent years in the number of severe allergic reactions being treated in hospital, there does not appear to have been an increase in deaths from anaphylaxis.
It is important to remember that anaphylaxis is uncommon in children with food allergy and that the overwhelming majority of anaphylaxis ends in a complete recovery. Frustratingly, severe reactions are unpredictable so although they are more common in people who have previously had one and in people with asthma, you can still have a severe reaction without these risk factors. Some things make severe reactions more likely – being a teenager, male, non-caucasian, nut allergic (or milk allergic as a younger child) but there is nothing you can really do about these. In almost all of the very rare cases of fatal anaphylaxis, there are a number of contributing factors that lead to a bad outcome and it seems that it’s only when a whole range of things go wrong, that the result is fatal.
Having now spent some time working as an expert witness, there are some consistent messages that come through the detailed analysis of individual cases that happen as part of the coroner’s inquest. If you have a child with food allergy, then many of these messages may sound very familiar to you, but I wanted to highlight some key areas to help you to always stay prepared and try to minimize the chance of your child having a severe reaction.
Things you can do before a reaction:
- Make sure their asthma is well controlled – Asthma is a major risk factor for severe allergic reactions (featuring in 70-75% of fatal food anaphylaxis in published UK and Australian series). Poor asthma control, and the resulting underlying airway inflammation, predisposes to the bronchospasm (tightening of the airways) which is characteristic of severe allergic reactions. Asthma is very common in children with food allergy but studies of previous cases of severe food anaphylaxis have shown that life-threatening bronchospasm was most likely in patients with severe asthma (relative risk, 6.8 [4.1-11.3]) and less so in patients with milder asthma (2.7 [1.7-4.0]) so making sure that if your child has asthma, that it is both correctly identified and adequately treated Is very important. My personal practice is to treat asthma, in patients with food allergy, quite aggressively so as to ensure not only are they at a decreased risk of an asthma attack but also so that it is less likely that their asthma will contribute to a severe allergic reaction. Good asthma control means making sure that you have the correct medicine, that it is taken regularly and in the correct way (one of the most common reasons for poor asthma control is either not taking puffers or taking them incorrectly). It also means being aware that if their asthma isn’t well controlled e.g. they are needing the blue puffer more often or getting regular symptoms, then you need to raise this with your doctor. It you are worried, using a home peak flow meter or doing a regular Asthma Control Test, can help you keep a closer eye on things.
- Ensure you have access to 2 Adrenaline auto injectors (AAIs) at all times and that you know how to use them – The key step in the management of anaphylaxis is prompt administration of adrenaline and that is why people at risk are given Epipens, Jext or Emerade devices to carry with them. This requires education and understanding around the recognition of severe symptoms and how to respond to them. If you are not completely clear how to use the device (especially if you have had your device swapped for a different one because of shortages), make sure you ask your GP or our practice for training and, in the meantime, look on the company website where you will find training videos and training devices. Request a trainer device so you and other carers can practice. In cases where one dose of adrenaline has been given, about 20-25% required a further dose so it’s really important to have 2 available at all times. In most cases the second dose is given by a paramedic but having 2, reduces the risk of there being a problem if the first device didn’t work properly (which is very rare).
- Ensure your AAIs are the right dose and are in date – AAIs come in different doses and have an expiry date. They can still be used after this date, as long as the fluid in the window in the side is clear. You can register your child’s device on the AAI company website so that you get a reminder in good time to get it renewed. As your child gets bigger, make sure that they have the right device – once they are over 30kg they should have a 300mcg device (although these are fine from >25kg) and from 12 years of age (unless they are particularly small) they should have a 500mcg device.
- Ensure you have a British Society for Allergy & Clinical Immunology (BSACI) Allergy Action Plan and that you understand it – Every child with food allergies should have an Action Plan for home and school and the ideal is that everybody uses the same template from the BSACI – these can be downloaded from BSACI.org by your doctor so if you don’t have one, ask them to complete one for you. It is important that you familiarize yourself with it and that school have done the same. Go through scenarios in your head and make sure you are clear what you would do, especially if you are travelling overseas to ensure you know how to call for help. The BSACI plans are very clear that you should use your AAI at the first sign of a severe reaction and another 5 minutes later if things haven’t improved. They are also clear that if you are unsure if symptoms are severe enough, just use the AAI anyway. Delay in use of AAIs, despite the presence of severe symptoms is a common theme in fatal cases.
- Ensure school has your Action Plan, the AAIs and that these are the right ones – Assume nothing and make sure that school has an up to date copy of the BSACI Allergy Action plan and that they have 2 AAIs and a clear process to ensure they are in date. Don’t feel bad if you need to remind them that they are close to expiry! Schools are able to keep spare pens for any child where their pen can’t be quickly accessed or didn’t work but this is a voluntary scheme, so encourage your school to be part of it (sparepensinschools.uk) .
- Get an accurate diagnosis – Make sure you know exactly what your child’s allergies are. If you are unsure, pick this up immediately with your doctor.
- Understand food labelling – The best way to avoid a severe reaction, is to successfully avoid the foods your child is allergic to. This is not always possible and mistakes or cross contamination will always be a risk but having a good understanding of food allergen labelling is key. Every child with food allergy should have the chance to have this discussion with a registered dietician.
- Make sure you are understood – When ordering food in a restaurant/take away, make sure you communicate your allergies clearly and to everyone you deal with. If you do not feel you have been understood or properly heard, then raise this with the manager. If you still do not feel understood, then it’s best to avoid eating there. If you eat something and start to feel unwell, stop eating it. If you are going overseas, take translation cards (available from the allergy charities).
Things you should do during a reaction:
- Use AAIs at the first sign of a severe allergic reaction – As soon as there is any suggestion that your child’s breathing is involved e.g. difficulty in breathing, wheeze, chest tightness, voice changing, throat closing or your blood circulation e.g. dizziness, light headedness, confusion – just get on and give the AAI. This means using it before calling 999 for help, before antihistamines, your Ventolin puffer or steroids.
- When in doubt, use the AAI – Adrenaline is harmless so if you use it for a mild reaction, it won’t do any harm. It’s better to use it when you didn’t need to, than to not use it when you did. If you are unsure if symptoms warrant adrenaline – give it anyway.
- If things are not clearly improving within 5 minutes of using the first AAI, use the second AAI
- When calling 999, be clear to state that the problem is Anaphylaxis – Be clear that there is a life-threatening allergic reaction that needs an urgent response.
- Don’t stand up – Outcomes are better when the patient stays sitting or lying down with legs raised to help circulation and ensure a good blood supply to the heart.
- Avoid cofactors – Do NOT exercise, do NOT get on a plane, do NOT drink alcohol if you have just had an allergic reaction – all of these can make it worse.
- Get help, even if you feel much better – If you use an AAI, always call an ambulance or go to A&E as there is a small risk of a ‘late phase’ reaction a 2-6 hours later.
Remember, severe reactions are rare but I believe that if you have these messages straight, then you can help to reduce the risk of bad things happening to your child.