How does Sydenham’s Chorea affect my life?

Sydenham’s Chorea should not stop your child living and enjoying life. At first, chorea movements may make it difficult for your child to get out and about like they normally do. This part of the condition should pass quite quickly as the movement disorder reduces. Some children complain about being tired and this may impact on their ability to enjoy school, hobbies, friendships and family time. This tiredness can be a problem even when there is no heart problem and after movements seem to have settled. It can help to look with your child at their activities through the week and reduce any that are not enjoyable or completely necessary, that could be potentially increasing their tiredness. This will help to focus energy and time on getting the best from their body, physically and mentally as the child builds up their strength gradually.

Feelings & Behaviour

Some children will develop emotional or behavioural difficulties. These might include depression, anxiety about separation from parents, personality changes, being overly emotional, obsessive-compulsive disorder (OCD) and attention deficit/hyperactivity disorder (ADHD). It is not known if these emotional effects are part of Sydenham’s Chorea or a result of it. Sometimes emotional outbursts happen just before involuntary movements begin. Some children are able to cover up symptoms in school but behave very differently at home. This is hard for parents to manage, but is a sign that the child feels safest at home. This may mean that a child can cope in school by letting problems out with the family. Changes in your child’s mental health can be very difficult for parents, grandparents, external family and siblings to adjust to. Some parents talk about seeing their child ‘changing before their eyes’.

How will Sydenham’s Chorea affect school?

You might have lots of hospital appointments to attend initially. Together with the disease this can affect your child’s attendance at school. It is not helpful for children to be worrying about getting behind with work. It is helpful for parents or carers to link closely with school to minimise the work a child is missing and to help them to keep up. It is useful to pick up school work for your child to complete at home and sometimes, teachers may visit your child to complete lessons at home. Starting back at school may be easier with a part-time timetable. It may be helpful to ask for a child to be referred to the school’s Educational Psychologist for additional support. If your child is attending school, you may want to inform the school about the condition, including the possible emotional and behavioural issues. Your child may notice that their concentration and attention is affected and this can make learning in the classroom harder on some days. Sydenham’s Chorea is not well known. A child may be more vulnerable to bullies if their peers do not understand the symptoms. It might be helpful to ask the school to complete a lesson on Sydenham’s Chorea to help educate the class on the condition. Some children find the chorea movements difficult to manage in school and health professionals can help you to think about how you manage this more successfully. For example, sometimes a change of position in the class can mean that movements are less troubling for the child and those nearby. Extra time in exams and tests may also be needed.