The Dystonia Society

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Caring for a child with dystonia

Parent

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Click here for useful telephone and online resources for carers.

Click here to learn more about dystonia.

If your child has received a diagnosis of dystonia you may well be feeling upset and worried about the future. You probably have many questions.  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 are several treatment options available. In most cases, the dystonia can be managed through specific treatments.

How will it affect my child’s life?

Every child with dystonia is different and the impact of dystonia on their lives will be variable between individuals. In most cases the dystonia can be managed effectively. The best person to give you advice about this is your child’s movement disorder consultant. 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, this should not limit what your child is able to achieve. Children often become ingenious at finding ways round the difficulties they face to ensure they have an active and fulfilling life.

Will it affect my other children?

Dystonia can run in families and we now know that, in many cases, childhood dystonia may be caused by one of a number of different genes. However, even if a child has inherited a gene that causes dystonia, this does not mean they will necessarily develop dystonia. For instance, one of the most common genes causing 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 significantly. Researchers are learning more about genetics and dystonia all the time and the hope is that this will eventually lead to new treatments. If you want to know more about the implications for your family, you can ask to be referred to a genetic counsellor.

Will my child get worse or better?

Dystonia symptoms usually develop 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 usually stabilise within a 5-year period.  

Medical process

Your child is likely to see a number of health professionals including neurologists, physiotherapists, occupational therapists and specialist nurses. 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.  

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. It can be frustrating but dystonia is a complex long-term condition that needs careful management – and patience. Click here to learn more about treatments.

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 to ensure that all necessary information about your child is passed on.

Some non-specialist healthcare professionals may not have come across dystonia. A guide on dystonia for health and social care professionals is available here. If you contact our helpline, we'll send them a hard copy.

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, you must not neglect your own needs and those of the rest of your family. 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.

Other support

In addition to the support provided by the staff at your child’s clinic, you can get help with their schooling from the school’s Special Educational Needs Coordinator (SENCO). As a carer you may be entitled to benefits. Click here to find out more.

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