Fatigue is very common after a stroke, and for some children and young people it is a long-term condition. But fatigue can and does improve. With support and understanding, a child can learn ways to manage their fatigue and lead an active life.
What is fatigue?
Fatigue is not like ordinary tiredness as it does not get better with rest. It can affect every aspect of a child's life. At its most severe, it may affect their ability to attend school. But even milder fatigue may also require major lifestyle changes for your family. This may feel like a lot to cope with, but there are many tips and techniques to help manage it.
How can stroke cause fatigue?
Fatigue is very common in children who have had a stroke. It can affect a child at any age, even years after a stroke. Even a mild stroke can cause fatigue.
Fatigue is a complex condition and the precise causes are not yet understood, but they are thought to include:
Impact on the brain: stroke causes direct damage to the parts of the brain which regulate alertness, arousal and sleep.
Physical difficulties: muscle weakness or tight muscles (spasticity) can mean your child uses more energy doing everyday things like walking and dressing. They may experience fatigue while the body is trying to re-learn skills, and therapy exercises can be tiring.
Emotional impact: the experience of stroke, treatment and its effects may cause anxiety or low mood that can trigger fatigue. The frustration and other emotional aspects of fatigue itself may lead to anxiety and low mood, in turn triggering symptoms of fatigue.
Concentration, memory and thinking: your child might need to put more effort into things like concentration, remembering and planning things. This can be tiring and lead to fatigue from everyday activities.
The fatigue was the worst part of the recovery for us. Mood swings were horrendous. My son was very frustrated that he didn't have the energy to do the things he did before.Parent
What are the signs of fatigue?
A child or young person with fatigue might have extreme tiredness and trouble with everyday tasks, including:
Tiredness even after resting.
Problems with sleeping, such as regular waking.
Exhaustion after even mild physical activity
Difficulties with memory, thinking and concentration, including restlessness and fidgeting.
Problems with regulating emotions, such as anger, anxiety or low mood
It is normal for fatigue to vary over time. It can also fluctuate during the day. It is important to let the school know about this, so they can understand how tiredness can affect your child at different times and in different ways.
With fatigue, everything takes more effort, so everything is more tiring. Allow for downtime and plenty of rest.Parent
What could fatigue mean for my child?
It depends how severely your child is affected. At a milder level, they may need to rest more, and might not be able to take part in all their usual activities or spend as much time with friends. Tiredness at school could mean they may struggle to concentrate, or miss chunks of classroom learning.
At a more severe level, they may need to use a wheelchair to make the most of their energy for enjoyable activities and minimise the impact of fatigue on social life, education and wellbeing.
One of the hardest things about fatigue is that it is invisible, and it can vary from day to day. It can be hard for others to understand, including teachers and friends.
My child's [fatigue] has become less frequent the further along we are, but every now and then it's like his brain needs time to catch up and have some down time. This worried us a lot at the start, but we are more used to it now.Parent
Frequently asked questions
Is my child's tiredness stroke-related fatigue or could it be something else?
Fatigue can sometimes be caused by things like medication and other health conditions, so it's very important that you talk to the GP or consultant. They can carry out any tests or checks to rule out a medical cause.
If your child's sleep is disturbed, look for advice about helping them sleep. Talk to your child to understand whether low mood or anxiety could be playing a part too.
When is the right time to go back to school after a stroke?
It depends on your child and their recovery. Some children will be badly affected by fatigue and may need to take it more slowly. Going back to school might be helpful for them because they can go back to their routine and see their friends. But some children may need a bit longer to get further along in their recovery. Talk to your child's therapist if possible as they may be able to suggest how and when they should go back to school.
Make sure you explain your child's fatigue to the school so they can understand the impact on your child.
When he did return to school he barely managed a couple of hours before his teacher was ringing to ask me to pick him up as he was so tired. We decided between us and the school to stagger his return. A couple of hours progressed to a half a day and eventually after 3 months he returned full time.Parent
Preparing to go back to school or college
Work with the school or college to devise a plan for their return. Log their fatigue over time, and patterns or triggers, to show the school what adjustments are needed. For example, they may need a rest after lunch. The plan must be flexible because energy levels may vary from one day to the next.
If your child needs support with fatigue or other aspects of learning after stroke they should have a personalised support plan in place. This might be from the school, or it could be an Education, Health and Care Plan (EHCP) for higher support needs.
There is guidance for schools relating to supporting pupils with medical conditions.
Read more about finding support
Some adjustments in school or college might include:
Reducing the number of subjects.
A part-time timetable.
A staggered return, building up hours and days over a number of weeks.
Using technology like a laptop or mobile device to help with memory and writing.
Submitting assignments in different formats such as audio, or using a scribe to reduce the energy needed for completing the work.
I think children need to be involved as much as possible when going back to school.Young stroke survivor
Tips for managing your child's fatigue
Encourage your child to carry out some physical activity, taking it gently at first.
Help them find a relaxation activity that they enjoy and develop a wind-down routine before bed. Try yoga, mindfulness apps, a warm bath or an audio book.
Help your child find a good balance. They might need to stop fun activities a little earlier or make last-minute changes, but this is a long-term issue, so they need plenty of fun activities as well as rest.
Time homework when they feel most alert.
Strategies to pace yourself
Help your child develop the skills to manage their energy. First, help them recognise the pattern their fatigue takes, then share with them the 'three Ps'.
Managing fatigue: the three P's
1. Pace: Think about how you can take things step by step, at a manageable speed, without triggering your fatigue.
2. Plan: Work out what you want to do, and plan when and how you can do it.
3. Prioritise: Decide which activities are important to you and which you can leave or get some help with.
Some tips from parents
We asked parents to share some of their experiences, and these are some of the tips they gave us:
Be aware that many young people blame themselves or feel they are being lazy. Tell them fatigue is a very common effect of stroke and make sure they have support with emotional problems like anxiety and low mood.
Keep a progress log with your child. This could include:
What has gone well this week?
Write down one or two things you have achieved today.
How do you feel and how are your energy levels?
Recognise that the recovery process varies from week to week. If you are doing intensive physio for example you will probably feel more tired during that time.
Encourage your young person to tell parents and teachers how they feel, as fatigue is not always obvious to others.
Arrange time out as required at school.
Provide snacks for when they need an energy boost and agree with the school on how they can access them.
Our son's teacher introduced an extra snack time for him, to keep energy levels up. On the half days she would send work home to do so that he didn't fall behind.Parent