If your child has asthma symptoms every day, and the usual medicines aren’t helping enough, their GP or asthma specialist might tell you they have a type of asthma called severe asthma.
If so, our general asthma advice for parents might not always match what’s going on for you and your child. Here we look at some of the extra issues you might face and the support you and your child might need. We also suggest ways to make life easier.
Why caring for a child with severe asthma is challenging
Most children with asthma can manage it well and enjoy life without symptoms getting in the way. But a very small percentage of all children with asthma have to deal with symptoms that impact much more on daily life, and need specialist care to help them stay well.
They’re also at higher risk of an asthma attack and more likely to need emergency care for their asthma, often involving a hospital stay.
Parents of children with severe asthma tell us they sometimes:
- struggle to find a good work/life balance or have had to change jobs, go part-time or give up work altogether because of their child’s asthma
- feel under pressure at work because they need to take time off, sometimes at the last minute
- need to stay in hospital with their child or take time off to take their child to specialist appointments
- have to get up extra early on school days to make sure their child takes all their medicines in time
- think other people don’t understand why their child is always ill
- feel under pressure to explain why their child takes time off school
- need to change holiday plans – or not have holidays at all
- feel more like a carer than a parent
- avoid leaving their child with other people, even close family members.
Even though these challenges can be difficult, there’s still a lot you can do to make life easier.
How to stay on top of things
If your child has severe asthma they’ll probably have more symptoms, need more medicines, and may need to go to more medical appointments, so staying organised is important:
- A written asthma action plan can remind you what medicines your child needs to take and when.
- Make sure your child’s medicines are easy to find by always keeping them in the same place. For example, a box in the bathroom or a drawer in your child’s room.
- Keep a calendar or diary of your child’s symptoms every day to help you notice if symptoms get worse.
- Pack a going-out bag with their asthma ‘kit’ in, including a copy of their written asthma action plan and any contact numbers, so you know you always have what you need wherever you go.
- Use a whiteboard or a planner to keep on top of your child’s medical appointments.
- Keep important numbers, such as your child’s GP or asthma specialist, on the fridge or by the phone.
Encourage your child to be organised too
Helping your child to manage their own asthma means they’ll be more confident about taking their medicines when they’re not with you. And if they learn what to do if they’re having an asthma attack, it will give them more sense of control. Get ideas on how to talk to your child about their asthma, whatever age they are.
Find ways to stop your child missing out
If your child has asthma symptoms or needs to go to a medical appointment they might need to miss school, or say no to play dates or parties with their friends. Try these ways to help them stay included:
- Ask if their teacher can send any work home so your child doesn’t get behind. Or if your child’s in secondary school, find out if they can choose a ‘buddy’ who can copy any classwork for them, or pass on any homework.
- Build a good relationship with your child’s teacher - you'll feel happier sending your child to school if their teacher knows your child’s triggers and what to do if they have asthma symptoms.
- Invite friends for sleepovers at your house on weekends or holidays if you don’t feel confident letting your child go to theirs.
- Make the most of your child’s ‘well’ days by making sure they see their friends, do activities and sports and have fun time as a family.
- Staying active is great for your child’s self-esteem, and can help them manage their asthma better. Even if your child gets asthma symptoms every day, it’s possible to find activities or exercise they can do. Be inspired by others with severe asthma and talk to your child’s healthcare team about how your child can exercise safely.
- Make sure anyone else looking after your child knows what to do if your child’s symptoms get worse by giving them a copy of your child’s written asthma action plan. This will help you worry less about leaving them, or letting them go to friends’ houses.
Looking after yourself too
Caring for a child with severe asthma is an important and valuable job, but it can be tiring. Make sure you get the support you need to stay well yourself:
- Read our guide for parents’ wellbeing.
- Get advice on everything from how to get a good night’s sleep to how to make the most of family time.
- Call the Asthma UK Helpline on 0300 222 5800 for more help and support.
- Connect with other parents on our forum.
Find out more…
We have lots of information about severe asthma for adults, which you might find useful - from diagnosis and specialist care, to how to live well with the extra challenges.
And although our parent section hasn’t been written specifically for parents of children with severe asthma, you should still find our advice and top tips handy.
We want to hear from you so we can develop more pages. Tell us about your child’s experience, the kind of help your child gets from their GP or specialist services, and what life is like for you having a child with severe asthma.
Last updated December 2016