Caring for a child with severe asthma

Your asthma specialist might diagnose your child with severe asthma if their symptoms are not under control, even though they are taking all their asthma medicines as prescribed.

It could take some time for your child to be diagnosed with severe asthma. They’ll need to see a specialist team and have tests such as chest x-rays and tests to see how their lungs are working. They might even need a few days in hospital to be observed.

Parents sometimes find this slow and frustrating, but it’s important that your child gets the right diagnosis.

Here, we look at some of the issues you might face and the support you and your child might need to make life easier.

Most children with asthma can manage their asthma well and enjoy life without symptoms getting in the way.

But a small percentage of children with asthma have severe asthma. Their symptoms impact much more on daily life, and they 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 have told us they:

• feel under pressure at work because they need to take time off, sometimes at the last minute if their child has an asthma attack with no warning or build-up. Some have had to change jobs, go part-time or give up work altogether because of their child’s asthma
• need to stay in hospital with their child or take time off for 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. Some parents tell us that they’ve been told their child can’t go on school trips unless a parent goes with them
• need to change holiday plans – or not have holidays at all. Some parents tell us that it can be expensive to find travel insurance that covers their child’s severe asthma
• feel more like a carer than a parent
• avoid leaving their child with other people, even close family members.

These challenges can be difficult, but there are things you can do to make life easier.

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 can help you feel more in control.

• A written asthma action plan can remind you what medicines your child needs to take and when.
• Keep a calendar or diary of your child’s symptoms every day to help you notice if symptoms get worse. Severe asthma symptoms can come on suddenly without warning, so it’s important that you know what to do.
• Make sure your child’s medicines are easy to find by always keeping them in the same place, for example, a drawer in your child’s room.
• Make sure you always have a spare inhaler for your child, and order new inhalers before they run out. Pack a going-out bag with their asthma ‘kit’ in, including their medicines, 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, planner or your phone calendar 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 and in your phone.

Helping your child to manage their own asthma and learn what to do if they’re having an asthma attack can help them feel more confident and in control, even when they’re not with you.

Read our tips on how to talk to your child about their asthma, whatever their age.

If your child has asthma symptoms or needs to go to a medical appointment they might need to miss school, playdates or parties with their friends. Try these ways to help them stay included:

• If your child has to miss school, ask if their teacher can send any work home so they don’t get behind. If your child’s in secondary school, a friend might be able to copy classwork for them, or pass on homework. Children with severe asthma are likely to need time off school, but schools have a duty to make arrangements that support their education.
• Build a good relationship with your child’s teacher so they understand your child’s triggers and what to do if they have asthma symptoms. Your child will need an Individual Care Plan that explains how their school will support them. You might also find it helpful to talk to the school nurse, who can help you make sure your child’s needs are looked after.
• Invite friends for playdates or sleepovers at your house if you don’t feel confident letting your child go to theirs.
  Make the most of times when your child is well by making sure they see their friends, do activities and sports and enjoy family time.
• Staying active is great for your child’s wellbeing, and can help them manage their asthma better. Most people with asthma can do some sort of physical exercise, so talk to your child’s healthcare team about how they can exercise safely.
• If someone else is looking after your child, give them a copy of their written asthma action plan so you feel reassured that they know what to do if your child’s symptoms get worse.

Caring for a child with severe asthma can be hard on you, so it’s important to take care of yourself.

• Read our wellbeing guide for parents.
• Get advice on everything from how to get a good night’s sleep to making the most of family time.
• Call the Asthma UK Helpline on 0300 222 5800 for more help and support, or WhatsApp on 07378 606728.
• Connect with other parents on our forums.

You might find our information about severe asthma for adults helpful too.

We’ve also got advice and top tips from other parents whose children have asthma.