Managing your child's cardiomyopathy

Who looks after my child’s condition?

Most children with cardiomyopathy are under the care of a specialist: a paediatrician, paediatric cardiologist, or a cardiologist (depending on their age). This might be at your local hospital or at a specialist hospital. The hospital may also have nurses that help support your child (such as heart failure nurses). The specialist will usually diagnose cardiomyopathy and start any treatment. They will usually see your child every six months or so, depending on how your child is doing.

Your child’s GP will usually be responsible for ‘day-to-day’ care in between hospital visits, and will provide repeat prescriptions and support for their condition.

Depending on how cardiomyopathy affects your child, they may or may not need the additional support listed here.

  • Children’s community nurses provide support to parents and children who have health needs. Their support might be with medical needs and equipment, or with development or care needs. The nurses might provide support at home, or at nursery or school.
  • Health visitors work with families with pre-school age children to support them at home with any health or development needs, depending on the individual’s circumstances.
  • Dieticians (a health professional with expertise in diet and nutrition) can help with developing an eating plan for anyone who may need dietary changes to help manage their condition.
  • Social services and social workers provide help with additional support needs. For example, a ‘needs assessment’ looks at what support or services might be needed to support a child with any limitations caused by their medical condition. This is usually done by the ‘children with disabilities team’ from your local social services, and involves them visiting you at home. You can contact your local social services directly, or ask your GP, paediatrician or nurse to ask for an assessment on your behalf.
  • Psychological services offer support help with managing the psychological impact of being diagnosed and living with a long-term condition. This might include seeing a psychologist or counsellor. You can talk to your GP, paediatrician or nurse to ask about being referred to a service, or you can look for a service yourself privately. Some schools might be able to help with psychological support through an educational psychologist. You can talk to your child’s school about this.
  • Palliative care is sometimes offered to people with long-term conditions, and focuses on supporting both medical needs (such as your treatment options) and psychological or emotional needs and choices to support quality of life. (Although ‘palliative care’ is often used to describe care offered to people who are terminally ill, it is not only available to those with a terminal condition.) You can talk to your GP or specialist about palliative care.

How can I help to keep my child well?

Cardiomyopathy is a variable condition, and children with the same condition can each have different experiences. Some have severe symptoms and some have none, and the way in which a child reacts
to their condition will vary. And things can change over time as well.

”Take each day at a time.”

Understanding about the type of cardiomyopathy your child has, and their symptoms, can help you to understand what treatment and support they might need now, and in the future. Importantly, it also helps to work out what adjustments they might need and how they can be best supported so that they can carry on with normal activities (which can really help when they want to fit in with their peers).

Coming to terms with a diagnosis, and learning how to live with cardiomyopathy, can be difficult, and can take time. Sometimes you have to find out how to adjust to this new life, and how to balance ‘normality’ with things such as doctors appointments and managing symptoms. While it can be helpful to focus on ‘getting on with life’ sometimes this means making some adjustments. There are no rules about how to do this, as every child, and every family, is different.

“You just want to wrap her up and protect her. However, she needs to live a life.”

Below are some questions that parents have told us are important.

How do I monitor my child’s condition?

Monitoring often refers to keeping a record of your child’s condition, symptoms and treatment. This can be helpful in identifying any changes to their condition, for example, if they have started a new medication and you can see that it is working. This can be useful for the specialist to review their condition and its treatment. 

It might also be helpful to monitor other things that affect, or are affected by, your child’s condition. This might include their sleeping pattern and their mood (how they are feeling).

How you monitor you child’s condition might depend on their age, and whether they want to monitor their own condition. It can be a good way of encouraging young people to get involved in managing their own condition. This can be important in teenagers who will start to be transferred from their paediatrician to an adult cardiologist (called ‘transition’ to adult services) at around 16 to 17 years of age. 

How do I manage medication?

Most children who have symptoms from their cardiomyopathy will be taking medication. There are many different types of medication, which all do different things. Read more about treating cardiomyopathy in children.

When should they take their medication? Most medications will be taken once or twice a day, and this will usually be written on the pharmacy sticker on the packet, or within the patient information leaflet in the packet. For medication to work best, it is helpful to take it at about the same time each day, which helps to keep the levels in the body consistent. Sometimes it helps to link taking medication with another regular task, such as brushing their teeth, as a reminder.

I’m worried about side effects. All medications have the potential to cause side effects, but not everyone gets them. You can ask your GP or paediatrician what side effects to look out for with any medication, and the details will also be in the patient information leaflet in the packet. Although the list of side effects can be long and off-putting, it is worth remembering that they are only possible side effects and are not guaranteed. If your child has side effects from one medication there are usually others that can be tried instead.

What do I do if my child vomits or gets diarrhoea? The patient information leaflet in the packet of medication should tell you what to do if your child is ill after taking medication. This will usually be to take the dose again if it was soon after taking it, or to wait until the next dose is due. Your pharmacist can also give you advice on this. If you have any questions about medication, you can talk to your specialist, GP, nurse or pharmacist.

What activities can my child do?

Many parents are concerned about whether their child’s condition will affect what activities they can do, and how to keep them safe while still encouraging them to get involved in the normal activities.

Parents are often concerned that physical activity will be difficult, or will cause too much strain on their child’s heart. Generally, exercise is encouraged in all children, unless there is a particular reason why it is not suitable. It can improve overall health and fitness, and has a positive effect on emotional wellbeing. Aerobic exercise such as walking and swimming (which relies on oxygen getting to the muscles) can be beneficial for the heart. However, in someone with cardiomyopathy, exercise can place an additional burden on the heart, which may already be struggling to meet the body’s normal demands.

Guidelines on exercise are complex, and depend on the type of cardiomyopathy someone has, and their symptoms. Also, it is hard to give recommendations as each child is different. Generally, it is advised to join in ‘recreational’ (fun) exercise but to avoid sports that are intense or competitive, or that need sudden bursts of exertion (such as sprinting). It is also important to be aware of any symptoms that start during exercise, such as feeling chest pain, dizziness, breathlessness or palpitations.

Read more about cardiomyopathy and exercise.

It is a good idea to discuss exercise and activities with your child’s specialist, as they will be able to help you and your child make decisions about what activities are suitable based on your child’s experience of cardiomyopathy.

Can cardiomyopathy affect my child’s wellbeing?

Living with cardiomyopathy can be challenging, whatever age you are. People respond differently to a diagnosis, and feelings can change over time. There might be times when someone feels well, and is positive and able to manage their condition so that it has minimal impact on their life. At other times, they may feel very unwell, or feel upset and unable to cope. All these feelings are understandable, and can be part of living with a long-term condition.

Some people experience stress, depression and anxiety. While many people feel this way at some time and it can be a normal reaction to a diagnosis, when these feelings are persistent and start to get in the way of life, it may be helpful to look for sources of support. Support can take many forms. For some, having the opportunity to talk through how they are feeling can be really helpful, either with family, a friend, or a teacher or counsellor at school. More formal counselling (having appointments with a trained professional) might help, or medication might help to manage these feelings. You can talk to your child’s doctor about this.

Depending on their age, you might find that there are times when your child is happy to talk about their condition, and times when they seem worried or withdrawn. Some children may find it difficult to express themselves, and how they are feeling physically or emotionally. Sometimes this can show in their behaviour, and they may be withdrawn or irritable . And this can be hard on you too. Talking to your child about their feelings is often a good place to start. 

What should nursery/school know?

You child’s nursery or school might already know about your child’s condition; perhaps you have spoken to them about it, or they have picked up on symptoms your child is having. So that they can support your child and look after any medical needs, it can be helpful to talk to the nursery or school about your child’s condition, focusing on how it affects them and what help they may need.

What to tell nursery or school will depend on your child and what symptoms, if any, they are having. The teachers and support staff might not have experience of supporting a child with cardiomyopathy before, and they may not know much about the condition. If might be helpful to give them some information to explain more. For example:

  • the type of cardiomyopathy your child has;
  • how it affects the heart;
  • what symptoms your child has and how they need to recover;
  • what medication they are on and any side effects to look out for;
  • whether they have a pacemaker or ICD;
  • what help they might need so that they can join in activities; and
  • when to call for help.

What help might my child need?

This will depend on your child and their condition. Some children will need very little support, and others will need more. It might be helpful to talk to teachers and support staff about what symptoms your child has, how this might affect them in the classroom, and how they can be helped. The following are some examples.

  • If you child feels tired during activities they may need time and somewhere to sit down.
  • If your child is breathless or has swelling in their ankles they might need to lie down to help reduce this.
  • They might be worried about their condition and need reassurance. 

If you have a community or a heart failure nurse, you could ask if they can talk to the school. Some may even be able to visit the school to explain more.

Time off for appointments

You may need to take your child out of school during the day for medical appointments. Talking to  staff in advance can help so that they know when your child will be away from school and can make arrangements so that they don’t miss out on school work.

Risk assessments: what activities can my child do?

Before a nursery or school decides what activities you child can’t do, it is helpful to look at how they can be supported to do activities. To do this, it can be helpful to do a risk assessment. This involves looking at what the activity is, and why it might be a risk to your child. Assessments need to be specific and individualised: based on how your child’s condition actually affects them, and not on how people think their condition might affect them. They are not about looking at risks to restrict what you child can do, they are about looking for ways in which activities can be managed, changed or safety-measures put in place so that your child can be included. This is sometimes referred to as reasonable adjustments so that children can be included.

Extra help from school

Children with health conditions may have extra support needs at school. While this is not necessarily the case for all children with cardiomyopathy, if you are concerned about how your child is getting on at school, you can ask the school about an Education, Health and Care plan (or EHC plan). This involves having a needs assessment to identify what help a child needs to support them with their education. An assessment is done by your local authority, and either you or the school can request this.
For more information visit Contact a Family (opens new window) or Gov website (opens new window).

CPR and defibrillators

It is important that nursery and school staff have first aid training in case any child should need it. But this can be even more important when there is a child with cardiomyopathy, as there is a risk that they could have a potentially life-threatening arrhythmia. Arrhythmias can cause loss of consciousness, and can cause cardiac arrest if they are not treated as an emergency. Giving cardiopulmonary resuscitation (CPR) is important until an ambulance arrives.

Some schools will have automated external defibrillators (or ‘AEDs’). These are portable machines that detect abnormal heart rhythms or a lack of heart beat, and can give an electric shock (defibrillation) to get the heart back into a normal rhythm. The machine gives instructions about how to use it correctly, and it can be helpful for staff to know where the machines are, and how to use them. 

Some children who are at risk of dangerous arrhythmias may have ICDs (internal cardioverter defibrillators) implanted. If this is the case, it is important that the school know about this, and what to do if the child’s ICD goes off.

©Cardiomyopathy UK. May 2017.