Anaphylaxis is defined as a serious allergic reaction that is rapid in onset and may cause death. It is the most extreme form of an IgE mediated reaction (see here). The incidence of anaphylaxis is rare but seems to be increasing. Parents and healthcare professionals, such as paramedics, need to be familiar with anaphylaxis to ensure that management is the best that it can be. The most effective treatment of anaphylaxis is the prompt administration of adrenaline using an autoinjector (see here).
Recognising what is happening to your child early on is key. Once the reaction is over, appropriate follow-up with thorough investigation into the cause, if unknown, and advice on future prevention is also crucial. As the parent, you and your child can be empowered to understand what is triggering your child’s reactions and learn about the day-to-day role of effectively managing anaphylaxis.
Levi’s nut and egg allergies have shown the most severe reaction so far with wheezing and swelling. He carries an EpiPen for these.
BEV, MUM OF LEVI
In children, the most common cause of anaphylaxis is food allergy and the most common symptoms are severe breathing difficulties. In adults, reactions to drugs such as antibiotics, latex or insect stings are more common causes. These reactions are all very rare in children. It is not possible to predict who may suffer an anaphylactic reaction, as the severity of the allergic reaction is dependent on lots of factors. Allergic reactions to food are unpredictable and anyone with an IgE mediated food allergy (see here), in the wrong set of circumstances, may have a severe reaction. Previous severe reactions are a risk factor for future anaphylaxis but there is no evidence that allergic reactions become progressively more severe with subsequent exposures to the allergen – despite the myth about this. If your child has other illnesses, especially asthma, there is a link with a more severe allergic reaction to food allergens.
To recognise a food-allergic reaction in your child and to respond with appropriate treatments, it is important to know and consider both the symptoms of an allergic reaction that are not harmful, although they may be uncomfortable, as well as the symptoms that are already, or may soon become, life-threatening.
The stories below are not anaphylaxis but they are allergic reactions. It is important to be clear about the difference.
Hannah’s first reaction occurred just before Christmas. We had made a cake containing walnuts and she ate a tiny amount and went out to the garden. After about 35–40 minutes I noticed she was scratching… I took her inside and rang the 24-hour nurse. They said take her to hospital and call an ambulance if her reaction got worse. We jumped in the car and took her to hospital and then the triage nurse examined her and gave her some antihistamine.
ANNE, MUM OF HANNAH AND EDWARD
During an allergic reaction, the skin is the most common part of the body affected. Hives – a red, lumpy itchy rash – is the most common skin symptom. The skin may also become swollen. The lips and eyelids may swell and the skin can become itchy and red and eczema may develop or become worse.
During weaning Hunter turned a bright red colour around his mouth when eating fish for the first time (cod mixed with a cheese sauce). The second time he had fish the red colour lasted much longer (I remember my dad saying that Hunter was ‘not right’). On the third occasion Hunter turned red, and strange red welts appeared all over his face and upper body. He also vomited.
EMMA, MUM OF HUNTER
In an allergic reaction, the stomach and bowel may also be affected. An itchy mouth, stomach ache, nausea, vomiting and diarrhoea can all occur. These symptoms so far are not in themselves dangerous. They should be treated promptly with an antihistamine, which will stop the reaction progressing. Antihistamines can be prescribed or bought over the counter. There are specific antihistamine liquids that are suitable for children over one year. The dose is specified on the pack according to your child’s age. There are ones that have longer-lasting effects such as Zirtek (active ingredient cetirizine) and ones that act for a shorter time such as Piriton (active ingredient chlorphenamine maleate). They should be given if your child has been exposed to an allergen. If your child is sick within 20 minutes of taking the antihistamine, a second dose should be given. Keep a close eye on your child for further symptoms.
Caution: Always read the labels and check with your doctor prior to using antihistamines for your child, especially if she is under one year old.
The symptoms listed below are not life-threatening if experienced in isolation:
If your child has eaten or drunk a food that they are allergic to, then the symptoms in the list above should tell you that an allergic reaction is occurring. During the reaction, stay with your child and keep a close eye on her. Watch her breathing, and look for signs of tiredness and skin colour changes. If there is a worsening in any of these, the symptoms listed above or if any symptoms from the list opposite occur, then treatment with adrenaline is needed (see here), as discussed below. If you have an autoinjector, use it immediately. If this occurs then you must call ‘999’ and state that your child is having an anaphylactic reaction.
Each symptom listed below on its own may indicate a more life-threatening reaction.
At Easter 2010 (the boys were around 16 months old), Cameron had anaphylaxis… I went to work and had a call from the boys’ nanny… to say Cameron had been sick as she was walking them back from dropping her children at school and she thought he might be choking. By the time I got home Cameron was having real difficulty breathing. I dialled 999 and an ambulance arrived within minutes. Still working on the choking assumption, they decided to take us in as he was clearly struggling. In the ambulance he became very red. When we got to A&E we were taken straight through. As we were walking down the corridors to the children’s hospital Cameron suddenly went pale and limp in my arms – we ran the rest of the way. Cameron was injected with drugs – I don’t know what, antihistamines I guess – and made a huge recovery quite quickly… After that we were given EpiPens and had the allergy testing with blood tests a little later as outpatients.
EMMA, MUM OF CAMERON AND DILLON
During a food-allergic reaction, symptoms differ and their order of appearance may vary. The reaction can be frightening enough but the appearance of symptoms is variable, which can make it difficult to recognise a potentially dangerous reaction. In people who have had a previous anaphylactic episode, there is a significant risk of recurrence. Avoidance of the allergen is the best way to prevent subsequent anaphylaxis but despite your best efforts to avoid the allergen, there is always a risk of accidental exposure.
Mild symptoms that do not progress to other areas of the body are usually not considered life-threatening anaphylaxis (for example, only a skin rash or only an itchy mouth). When breathing or blood circulation is affected, however, the allergic reaction is life-threatening anaphylaxis.
When your child is diagnosed with a food allergy, one of the most important things to discuss with your doctor is recognising and treating future reactions. However careful you are, these will happen from time to time and you need to be prepared. Although the majority of reactions are mild, a severe reaction is always possible. In a large study of children with milk allergy, every year 40 per cent of the children had an accidental reaction although only 10 per cent of these were severe (with no deaths). In nut allergy, around 20 per cent of children will have an accidental reaction each year.
Your doctor should discuss with you whether you should just be carrying antihistamines with you or whether there is an increased risk of severe reactions and therefore advise carrying adrenaline injectors. It is essential that you are given a written emergency treatment plan (nursery or school will need this) and that you are trained to know when as well as how to use the adrenaline injector (see here). The sooner adrenaline is administered during an anaphylactic reaction, the more rapid the recovery and better the outcome for your child – this is why children are given these to carry with them rather than waiting to get to hospital. As a parent you will be encouraged to use the autoinjector as soon as there is any sign of anaphylaxis, such as difficulty breathing, wheezing, stridor (see here), persistent cough or a hoarse voice, or if your child becomes pale, floppy or unresponsive.
As the parent of an allergic child, you will also be told by the healthcare professionals that if you are wondering whether your child’s reaction is severe enough to warrant the use of their autoinjector, then this is probably the right time to administer it. That is good advice to pass on to any of your child’s carers. If you aren’t sure, use it.
In a severe allergic reaction, the priority is to give intramuscular adrenaline via an autoinjector (EpiPen or Jext). If you are alone with your child, give the adrenaline before you call 999. If there is somebody with you, they can call 999 while you give the adrenaline. State that you have given an AAI to your child to treat anaphylaxis for known food allergy. The paramedics will assess your child and take her to hospital, with you, to either continue treatment or monitor her for a while.
After this, asthma inhalers can be given via a spacer device, if your child is asthmatic as can antihistamine if your child is able to swallow. Your child may need a second injection of adrenaline after 10–15 minutes if she has not made a clear improvement and the ambulance has not yet arrived.
During an allergic reaction, your child should be placed in the lying position and the adrenaline autoinjector (AAI) administered. Do not try to sit or stand her up or get her to move around as this will cause a drop in blood pressure.
EpiPen, Jext and Emerade are all adrenaline autoinjectors (AAIs) that are used for the injection of the drug adrenaline or epinephrine, the first-line treatment for life-threatening allergic reactions. They have different names and there are adult and child versions of these autoinjectors. They provide different drug doses, but they essentially all look similar and do the same job. AAIs are rarely needed in a child who is under one year of age. However, if your child is felt to be at high risk of a severe reaction, they must be referred to a paediatric allergy specialist who can then prescribe an AAI at eight months old, at the doctor’s discretion, if the risk of anaphylaxis is high.
It is very important that you are taught in person how to use the AAI by the healthcare professional who prescribes it for your child. In addition to this teaching, your child’s AAI will come with instructions, so please read these carefully and have a look at the AAI websites (see here) for a recap on its use.
It is so important to recognise that you cannot delay giving your child the AAI. It does take courage and many parents are fearful of hurting their child but it is no worse than any other injection. In the situation of an anaphylactic reaction, there should be no delay in giving the AAI. It is a matter of life and death and needs to be given immediately. Any delay could affect the outcome for your child.
The AAI will be prescribed by a doctor, usually your child’s allergy specialist. While adrenaline is the most effective treatment for severe allergic reactions, its prompt administration requires patients to be carrying their own adrenaline injectors. Prescriptions of these have risen dramatically over the past two decades and most classrooms in the country will now have had a child who carries one. However, it remains extremely difficult to decide which child should carry these. On the one hand, IgE mediated allergic reactions are inherently unpredictable and many cases of severe reactions happen in people who had previously only had mild reactions. Prescribing everyone at risk of anaphylaxis an AAI therefore seems an attractive idea. On the other hand, this approach is enormously draining on healthcare resources – severe reactions are rare and the overwhelming majority of AAIs are never used, simply going out of date. More concerning, however, is that over-prescription of AAIs leads to a failure to focus adequately on children who have the highest risk of severe reactions. Most people prescribed AAIs do not carry them and of those that do, many are unable to use them. It would therefore make more sense to select children with the highest risk for anaphylaxis and ensure that they and their families are properly trained to use their AAIs and that they ensure they always carry them. This is the preferred approach of most doctors but selecting high-risk children is also challenging. In truth, the decision as to whether to prescribe AAIs is very much an individual one requiring discussion between the doctor and family. Being prescribed an AAI can significantly alter quality of life – in some families they act as a ‘safety blanket’; in others they create heightened anxiety. Every family has its own approach to risk and hence there will never be precise protocol on which child should carry an AAI.
There are some international guidelines for doctors to use to help decision-making. These are widely in agreement that any child with IgE mediated food allergy who has had a previous anaphylaxis or has concurrent asthma, should have an AAI. Of course, this means proper training in when and how to use it, and a written emergency plan. You must take the AAI everywhere that your child goes and eventually when they are old enough, your child will have to take on some of the responsibility for carrying their own AAI. Other risk factors that should influence the decision are the presence of allergies most likely to cause severe reactions, such as nut allergy, being distant from medical care or having had reactions to tiny quantities of allergen (although it remains debatable as to whether this increases the risk of severe reactions).
Another debate centres on how many AAIs need to be carried – some say two, others one and there are sound arguments on both sides, again in the context that few AAIs are ever used. While some children do need a second dose of adrenaline, as the first has not been effective (or the device is not correctly administered), in a UK setting there is almost always emergency medical care on hand by the time this is necessary. Most children will have two sets of AAIs – one to be left at school and the other to take around with them everywhere else. Some schools (mirroring what is happening in the US) are starting to have a set of AAIs that can be used on any child, rather than having multiple sets from different children.
In summary, whether to have AAIs and how many to carry is a very individual decision that needs to be made with your doctor. What is clear, however, is that simply being prescribed an AAI is never enough. You need proper training, with the right supporting emergency plan and must carry the injector everywhere.
AAIs do expire, so it’s a good idea to register your AAI with a website that will email or text you a reminder. There are a few different websites that offer this service for free (see the Resources section on here). Repeat prescriptions are available from your GP.
There are some side-effects to giving an adrenaline into the muscle, the most common being an increased heart rate, sweating, nausea and vomiting, shakiness, headache, apprehension, nervousness or anxiety. However, these side-effects will usually go away quickly, especially if your child is able to rest. Adrenaline is safe when injected via an AAI and there is no risk of being sorry you gave it – only that it may not have been necessary.
The AAI should be kept at room temperature (25°C/77°F), which is worth bearing in mind on a hot day or when travelling to a hot country abroad. There are bags available specifically for carrying AAIs, which are also designed to keep them at the right temperature.
The Resources section at the back of this book (see here) provides details of where these can be purchased. Once you have given the AAI, it is not reusable.
Unfortunately, a large proportion of children who are prescribed AAIs do not carry them with them and even when they do, their carers are not able to use them properly. It is important to remember that reactions will happen when you least expect and you need to be prepared in advance for what you will do. Don’t wait until your child is struggling to breathe to start reading the instructions on the AAI.
My son was diagnosed at the age of one, after having a bite of a peanut butter sandwich. He ended up in Accident and Emergency and Intensive Therapy Unit overnight.
ERICA, MUM OF EVAN
The three times we used the EpiPen… Kobe [had] started to have asthma issues – he couldn’t breathe and was coughing and sneezing. The first time this happened I waited too long, we were so new at this and didn’t really know what to do. He turned white, unresponsive and was panting slowly. We used the EpiPen and he instantly was fine. It was almost like whatever it was jumped out of him (crazy sounding, I know). We called 999 each time and the ambulance was very helpful.
BRANDY, MUM OF KOBE
Anaphylaxis typically appears as described above by Brandy, Kobe’s mum. It is a rapid appearance of the symptoms above. Your child will eat the food, get hives and swelling around the mouth which spread and then the difficulty breathing starts. In this situation, the AAI must always be given and an ambulance called. However, severe reactions are not always typical and in these cases, when in doubt, the AAI should always be given.
I didn’t hear the word ‘anaphylaxis’ until one of the specialist nurses came to see me much later on as we were in the waiting room to go home. It still hadn’t occurred to me that was what had happened. I remember being shocked – I knew the boys had an allergy but it had never occurred to me that anaphylaxis was a possibility. At that point the seriousness of what had happened to my baby boy hit me and I was terrified. I was sent home with one or two EpiPens. It was weeks later that I remembered that a friend had been round making Easter eggs for her cousins with chocolate buttons. I think one must have fallen under the washing machine and Cameron found it and ate it.
I have now researched as much as I possibly can about anaphylaxis. Cameron didn’t have really obvious signs save for the difficulty breathing and flushed skin. He didn’t swell up and didn’t have hives around his mouth. His reaction was delayed by at least an hour, possibly more. I think we were so lucky – that I got home from work quickly, that the ambulance came quickly and that the lovely registrar noticed the hives. I dread to think what would have happened if we hadn’t got medical attention so quickly. I hadn’t had any training or advice on signs of anaphylaxis, we hadn’t had any testing for allergies and I had no idea how serious it could be.
EMMA, MUM OF CAMERON AND DILLON
My first experience of Zach having a severe reaction was when he was 19 months old. At a friend’s house he ate a small bit of a ‘free from’ crumpet. I didn’t think to check the packet until the last minute and it contained egg white. It was a strange experience. He didn’t react straight away, in fact nothing happened for about 30 minutes. In that time, I started to think that maybe he was no longer allergic. Then he very rapidly deteriorated. He began to sneeze repeatedly and scratch his nose. His nose and eyes became swollen and patches became raised and red on his arms and legs. He was crying, hot and red, so I took him outside. At that point he stopped crying and became drowsy. His eyes were rolling backwards and he felt a bit limp. I put him in his pushchair because I thought he might be tired. I quickly realised what a bad decision that was so picked him up again, and jiggled him around and shouted at him to stay awake while I ran back to my friend’s house. I didn’t know what to do so I called my medic husband and he told me to give him a large dose of Piriton. My friend ran to a pharmacy and that’s what we did. Zach then fell asleep on me for an hour. When he woke up, his skin had gone down, but he stood up and turned deep blue around his mouth and nose. His whole body began to shake and he was very cold. We wrapped him up, but he was okay and was smiling and wanted to play. We gave him more Piriton and the worst of the reaction was over. Before that happened, I thought I was quite calm in a crisis. I am used to emergency situations from working in the NHS. However, when it happened to Zach, I didn’t know what to do and it took me ages to realise what was happening. I should have given him the EpiPen and I should have been carrying an antihistamine with me, as he was clearly having an anaphylactic reaction. No matter how prepared I thought that I was, when it happened to my son, I was frightened and not prepared at all.
This experience taught me that it can be difficult for parents to know when a reaction is severe and what to do about it. However, it is important for you, your child and childcare providers to be clear about what symptoms can occur during an allergic reaction and which ones are dangerous and require emergency treatment with an adrenaline autoinjector. If you are unsure whether your child is having an anaphylactic reaction, but she has the symptoms, always give the AAI and call an ambulance.
After my first experience of Zach’s anaphylaxis, the paediatrician asked me if I had been scared. When I replied that I had, he said ‘Good, you should be. It’s meant to be scary’.
The next few chapters will discuss aspects of the allergic march, the progression through the different atopic illnesses that will commonly affect children with food allergies. As we know, allergies have increased dramatically in the Western world over the past few decades. Recent research has shown that an incredible 40 per cent of UK children have at least one allergic problem. This includes conditions such as eczema, asthma and food allergy, although the most common allergic problem is allergic rhinitis or hay fever.