If your child has been diagnosed with dystonia, you are likely to have many questions and concerns. What is dystonia? How will it affect my child’s life? Will it affect my other children? Will my child get worse or better?
This is understandable, but the best advice is not to panic. Although there is no cure at present, there is a range of treatment options available that can ease symptoms and help your child live as normal a life as possible.
What is dystonia?
Dystonia causes uncontrollable and sometimes painful muscle spasms due to incorrect signals from the brain. Dystonia in children can appear initially with a problem with a foot, leg, hand or arm that is twisted and may be painful when they try to use it. It can be caused by an inherited gene, another medical condition or birth trauma but in many cases no cause has been identified.
Will my child get worse or better?
The symptoms may be isolated to one part of the body but usually they develop and spread for a limited period and then stabilise. The time this takes will vary depending on the type of dystonia and the individual. For instance, in generalised dystonia, symptoms may stabilise within a 5-year period. Symptoms can be worsened by stress or injury.
How will it affect my child’s life?
Dystonia will affect each child differently and the impact of the dystonia on their daily lives will vary. The approach to treating the dystonia will also differ depending on the type of dystonia. Some treatments will aim to ease symptoms while others, such as physiotherapy, often focus on helping the child find the best approach possible to coping physically with their condition.
You may not consider your child to be disabled, but because dystonia can interfere with day-to-day activities it is described as a disability. However, children are resilient and develop ingenious ways round the difficulties they face to ensure they have an active and fulfilling life.
Will it affect my other children?
Some types of dystonia do run in families and may be caused by one of a number of different genes (Click here to learn more). However, even if a child has inherited a gene that causes dystonia, it does not mean they will necessarily develop dystonia. For instance, one gene that causes dystonia is known as DYT1. Even if someone has this gene, there is only around a 30% chance that they will develop dystonia and the degree to which they might be affected can vary widely. If you want to know more about the implications for your family, you can ask to be referred to a genetic counsellor.
Your child is likely to see a number of health professionals including neurologists, physiotherapists and occupational therapists. Appointments can seem daunting and, to get the most out of them, it is a good idea to write a list of questions beforehand. If your child is old enough, make sure they are also included in the discussion.
Treatment may be provided in specialist centres or by a local team. The consultant will discuss various treatment options with you. There is no one standard treatment for dystonia and it is likely to take a while to find the most effective approach. Treatment may also change if symptoms change and as your child grows. It can be frustrating but dystonia is a long-term condition that needs careful management – and patience.
Between the ages of 16-18, the care for your child will transfer from a paediatric (children’s) team to adult services. To ensure a good transition, you can ask to meet both the paediatric and adult consultants together so that all necessary information about your child is passed on. This also applies to all aspects of transition from children’s to adult services in education and social care.
Some non-specialist healthcare professionals may not have come across dystonia. A guide on dystonia for health and social care professionals is available from our helpline.
Dystonia and your family
Incorporating dystonia into family life can initially cause confusion and insecurity, but many families find that through mutual support they are brought closer together.
Encourage your child to accept that the dystonia does not own them; it is not their identity, merely a part of their life. Be positive and supportive, but also be aware that being overly-protective may not help them. Part of growing up is learning what you are capable of doing, and this is no different for a child with dystonia.
In your desire to help your child, it is important not to neglect your own needs and those of the rest of the family. Finding ways to have time-out is vital - having someone to talk to can also be invaluable.
It can take time to accept that your child has a disability. Some parents and carers describe it as going through a grieving process, including the recognised stages of denial, anger and depression, arriving finally at acceptance. You are bound to experience a wide range of emotions and, if you or your family find it hard to cope with this process, it is important to seek help through your GP.
You can get help with your child’s schooling from the school’s Special Educational Needs Coordinator (SENCO). As a carer you may be entitled to benefits- our leaflet for carers gives more detail on this.
Last update June 2014
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.