By clinical nurse specialist Diane Barlow from Great Ormond Street Hospital
How do I stop my toddler doing too much exercise?
Parents often express concern that their toddler is doing too much exercise. Young children tend to be very good at knowing their limits. They will play until they are tired or breathless and then generally rest. As part of their development, play is vital. However, if parents are concerned about how much their child is doing they could use distraction techniques to guide their child towards less boisterous play. It can be more difficult in older children who, as they mature, develop the knowledge of competition and the ability to push themselves hard during sports.
Educating children about their condition and what limitations it may cause can help maintain a healthy level of exercise. Liaising with nursery and school staff so they can monitor activities and be more vigilant can help to get the balance right for your child. In some circumstances statementing for a child may be an advantage as it provides extra help and monitoring which can anticipate problems and diffuse them before they occur.
How can I get my child to take his or her medicine?
Some children are on multiple medications and this can cause problems.For parents, timing of medications can be difficult and they can feel like all they do is go from one medication to the next. Parents should discuss medications with the cardiologist to see if he or she can simplify the medication plan. Also giving medications to school aged children can be problematic. Some schools have no school nurse and your child may need to remember to go for their medications. Again this medication can be discussed with the cardiologist to see if an alternative may be appropriate for your child. For example your child may be able to change to a once a day slow release medication.
For some parents medicines become a battle ground with their child. However there are many techniques that can be employed to reduce this stressful time. These include star charts and reward systems. If your child is old enough, education to understand what and why they are taking their medications is important. If your child is still reluctant to take medication you should discuss this with your cardiologist who will be able to refer you to relevant services to help.
How do I explain the condition to my friends?
It can be very difficult to explain the condition to other people when you may find some aspects of it difficult to understand yourself. You can help explain the condition by using booklets and information produced by the Cardiomyopathy Association. There are books on hypertrophic cardiomyopathy, diated cardiomyopathy and arrhythmogenic right ventricular cardiomyopathy. The books contain diagrams which can really help to explain the condition using a simple format. The internet, including the Cardiomyopathy Association’s website can also be a good source of information. It can also be very helpful to talk to other parents who have similar experiences and can provide you with ideas and support. Other parents can be contacted through the Cardiomyopathy Association.
Friends can be a source of great support and encouragement but may not know what to say to you and may be afraid of upsetting you. Sometimes it is easier for people to say nothing out of concern for your feelings. Some people find it easy to talk but others may become overly careful. Family dynamics can be severely tested when a child is unwell. Clinic visits, surgical procedures and frequent check-ups can disrupt the whole family’s routine and take an emotional toll on the family. Allowing friends and family to help you and keeping them informed can really ease the burden on you and your family. And there may be days when you do not feel like talking or answering questions. Friends do understand this if you are honest.
If you want to talk to other parents whose children have cardiomyopathy, talk to the CMA. They have a network of people who offer one-to-one support on the telephone.
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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