Managing Anxiety following Anaphylaxis – Polly James
Clinical psychologist Polly James works at the Evelina London Children’s Hospital at Guys' and St Thomas. She advises on how to manage the anxiety that all but inevitably results from an anaphylactic episode.
Anaphylaxis is a frightening experience
"It's literally like being in a car accident"
"You are drained, you are shaking to your core because your life was just in danger or you endangered another life”
“I felt like I was the only one that understood the severity…how sudden…how frightening it was. I was the only person to observe his reaction and struggled to share how traumatic and life threatening it was…make them understand…with my husband and friends. I felt like I had no control over his body.”
A crisis such as an anaphylactic reaction or a significant allergic reaction is traumatic for everyone and can bring additional challenges. Parents and children can be left feeling anxious and traumatised by the allergic reaction, by the memories of it and the fear of it happening again; in more severe cases, a parent may have seen their child nearly die. Such trauma can mean an enormous shift in many aspects of normal life involving food.
Many people with severe allergies and their families are forced to adapt quickly to living with this chronic condition. Having a food allergy involves being well most of the time if certain restrictions are adhered to, but there is the potential to become very seriously ill.
As you might expect, having such an intense allergic reaction may bring about feelings of panic, anxiety, and fears of death. Consequently, an anaphylactic shock could be considered a traumatic event that may lead to trauma- and stressor-related disorders (1).
In the first few days
It is completely normal to experience some distress after a severe reaction or anaphylaxis. For you or your child this may include difficulties in sleeping, distressing thoughts and memories popping into mind, nightmares, irritability, feelings of helplessness, reliving aspects of what has happened and thinking that you should have done more to help.
Social support from family, friends and people that are known and trusted is very important during the first few days. Many people find that their initial difficulties settle down and they are able to return to a more typical life within a few weeks.
Although talking about what happened can be helpful, no-one should be forced to talk about their experiences straight away. For some people, it is important that they have some quiet time to think things through. Trying to get back to the routine things in life can be helpful, for example having times for getting up, going to bed and eating can give a sense of normality to life.
You should also try to regain some control. It is helpful to arrange a meeting with your child’s school to review the care plan and to make a follow up appointment with your allergist. It is important to attend reviews and to prepare questions in advance. Ask to go over precautions and emergency management with adolescents in order to facilitate the transition to self-management.
Moving forward and rebuilding confidence
After the first few days your child may have some questions about what happened. Children and adults do not benefit from 'not thinking about it' or 'putting it out of their minds.’ Talk to your children and social network about it.
Without factual information, children (and adults!) speculate and fill in the empty spaces to make a complete story or explanation. In most cases, the child's fears and fantasies are much more frightening and disturbing than the truth. Young children often make false assumptions about the causes of anaphylaxis. Unfortunately, these assumptions may include some sense that they were at fault for the event. Explore your child's evolving sense of causality. Correct and clarify as you see false reasoning develop. Encourage your child to express how they feel and show understanding and acceptance.
Listen to the child, answer questions, and provide comfort and support. Reassure them where you can (N.B you cannot reassure them that they will not have a reaction again).
For example, you could say; “Things will get better”, “I will be there for you”, “you can ask me questions anytime”, “you are safe, and so are the people you care about.” To make your reassurances more believable, you can point out some of the safety measures that are being taken, like explaining what the medication does and that you are more aware of their symptoms and are better prepared.
It is fine to tell children that you do not know why something happened or that you get confused and upset by it, too. E.g. in the case where the allergen or cross contamination was unknown. In the end, listening and comforting a child without avoiding or over-reacting will have long-lasting positive effects on the child’s ability to cope with trauma. Honesty and openness will help your child develop trust.
Focus on the good: the medication worked, lots of people helped and were kind and that you learned lots. Positive interpretation of the trauma can be helpful by positively reframing the event and encouraging children to feel lucky as the event could have been worse. The good news is that children are very resilient, and they can even inspire us with their feats of strength and optimism.
Moving forward and rebuilding confidence
Making a ‘worry box’ helps to raise awareness of different feelings and explore who and how to ask for help. Any box will do and an old shoe box and lid is ideal. Cover the box and lid with wrapping paper (so that the lid can still be removed to empty the box) and make a slot in it so that the child can post letters into it. Encourage your child to help make and decorate the box so that they feel it is their special creation. Leave it in a convenient place for your child to access it.
Encourage your child to write down what they are worried about on post it notes or small pieces of paper throughout the day and then post it into the box. Schedule in a regular time each week (or more if there are lots and lots of worries) to sit down with your child and discuss the worries.
Talking through what has been placed in the box on a regular basis helps your child to know that they will have a chance to talk about their worries. This will then often free them up from thinking about the worries constantly because they know they will be discussed. After discussing the worries you can then decide if the talking has helped and it can be taken out of the box and thrown away, or if it needs to go back into the box for you to look after.
(Many adults find the principle of the worry box very helpful for processing thier own anxieties.)
The worry box also helps children to name what is that’s bothering them to an adult and makes the process of sharing initial worries a lot easier for them. They also learn that adults are interested in their worries, no matter how trivial it seems to us, and they learn that it is ‘safe’ to share the worry with adults. Over time, your child may begin to learn better ways to manage his or her worries and to recognise that not all worries are overwhelming.
It is useful to end your discussion with visualising a nice, safe and relaxing place that they can imagine themselves in and use all five senses to imagine what it would be like to be there. This helps to create a relaxing place to be before bedtime.
Understanding about anxiety
It is always useful to provide education about anxiety too. Anxiety reactions that mimic anaphylaxis are very common so it is important to increase children’s self-awareness about their body and how it reacts to anxiety.
You may wish to do this creatively by drawing around your child and then filling in their body outline with where they all feel anxiety in their body and then discuss the differences between symptoms of anxiety vs a reaction i.e. tingly lips or feeling that their throat is closing. This helps your child to differentiate allergy reactions form anxiety reactions.
Deep breathing is a great technique for stress, anxiety and panic takes just a few minutes and can be done anywhere. You and your child will get the most benefit if you do it regularly, as part of your daily routine. You can do it standing up, sitting in a chair that supports your back, or lying on a bed or yoga mat on the floor.
For younger children you could encourage them to practise ‘Balloon blowing’ and imagine you are blowing up a balloon. For example you could say “Take in a deep breath and steadily and slowly blow up your huge balloon. See the balloon getting bigger and bigger and bigger. Now close your eyes and imagine the balloon floating into the air. As you stand there, feel yourself becoming very quiet and peaceful.” Repeat this exercise 2 or 3 times every day.
For older children controlled breathing is quick method where you concentrate on your breathing and gain control of it. Controlled breathing is a great technique to help prevent angry outbursts and also as a tool to help you feel calm and relaxed.
Below is an example of a script you may want to say to your child;
Every person will find different relaxation techniques helpful.
Visualisation is another great strategy; thinking about the things you find restful or pleasant can help you to relax.
Physical relaxation is another relaxation strategy and usually takes about 10 minutes. This technique is particularly helpful for people who appear to be constantly tense or wound up. It is also good to do before bed to help with sleep difficulties.
All the major muscle groups in your body are tensed for about 5 seconds then released. Below is an example of a script you could say to your child:
Yoga: By practicing yoga poses, children can learn how to exercise, develop confidence, and concentrate better.
Self-compassion: It is particularly important for parents and carers to engage in self-care, especially after witnessing your child experiencing a severe reaction.
Think about the ways that you use self-criticism as a motivator. See if you can think of a kinder, more caring way to motivate yourself to make a change if needed. Be a good role model for your children and modelling self-compassion. For example you could note down 3 things you’re proud of everyday.
Relaxation techniques need lots of practice to make them work well. They might not work first time … Keep practising, maybe ask a friend, family member or worker if they can help. Once you get the hang of it and find what suits you best, you’ll be ready to use the techniques when you really need them.
Hopefully some of these strategies will be of some help to you and your family. However, if symptoms do persist for more than a month or intensifies it is recommended to go to your GP. For example, if your child continues to experience nightmare, or begins avoiding people or places or develop panic attacks or anxiety when faced with reminders of what happened.
The children’s allergy service at the Evelina London Children’s Hospital – October 2018
The children’s allergy service at the Evelina London Children’s Hospital has had a clinical psychologist since 2016. The charity Action Against Allergy provided a financial gift enabling the creation of a band 7 clinical psychology post for 2 days a week, which was funded fixed term for one year.
In 2017 following a successful business case to the NHS and the support of continued funding from Action Against Allergy a highly specialist clinical psychologist was appointed and the time was increased to 4 days a week and an assistant psychologist started for 3 days a week. The service has continued to grow and develop with support of a trainee clinical psychologist 1 day a week and a student psychologist for 2 days a week since September 2017.
An audit of the service after the first 6 months was carried out for the purpose of business planning to show the level of need identified by the Allergy team. In the first 6 months 71 new referrals were made to the psychology service and 43 patients had been seen for treatment. In total since the start of the service until present (January 2016-August 2018) 303 children and their families have been referred to the service and offered an intervention.
Reasons for referral
Common reasons for referral include; child anxiety, parental anxiety/overprotection, parental distress/trauma following anaphylaxis, difficulties adjusting to the diagnosis of allergies, challenging behaviours (such as anger/frustration and ‘feelings of ‘difference), feeding difficulties, problems with adherence to treatment, needle phobia such as the skin prick test and using the AAI, anxiety about food challenge, sleep difficulties, depression/low self-esteem, teasing/bullying and medically unexplained symptoms.
Due to demand for the service, it has adopted a ‘stepped care’ system of delivering and monitoring treatments, so that the most effective yet least resource intensive treatment is delivered to patients first; only ‘stepping up’ to intensive/specialist treatments as clinically required. In this way, all referrals are offered an intervention at triage.
Step one focuses on prevention and promotion; the service delivers psychology workshops, based on a cognitive behavioural therapy and narrative therapy techniques, to help children understand the role of feelings and worries in relation to allergies and develop good coping skills and strategies to manage difficult emotions.
The psychology service also runs monthly parent workshops and parallel parent sessions in conjunction with the children’s groups and these are based on the common themes and challenges identified by parents such as ‘improving communication with schools’, ‘How to manage feeding difficulties, ‘preparing for skin spick tests and food challenges’ and ‘Managing anxiety and parenting strategies.’
Step two involves a telephone assessment and workshops and self-help or brief intervention of 1 to 3 sessions.
Step three is face-to-face assessment and interventions (e.g. group workshops, short term psychological interventions).
Step four involves specialist psychological interventions for complex patients.
Outcomes for the service provided have included supporting children with food challenges and skin prick tests, decreasing food aversion and improvement of diet, improvement in self-esteem, sleep improvement and reduction in child and parent reported anxiety and improvement in quality of life.
If you found this article interesting, you will find many more articles on anaphylaxis here, and reports of research into anaphylaxis here.