Contact the charity for parents and carers of children with disabilities have published guidance in the present covid'19 emergency at https://tinyurl.com/ttjcqxb the information is very useful and covers many aspects
Epileptic seizures can begin at any age but many people will experience their first seizure in childhood or their teens. Childhood epilepsy varies enormously in type, degree or severity and can occur in children with or without other medical conditions. Most children who have straightforward epilepsy live a normal active life and enjoy all the childhood leisure activities and sport which is to be encouraged. Some types of epilepsy will cease during the teen age years but there are many epilepsies and syndromes so that all seizures should be medically investigated.
It can be very frightening to see a child having a seizure but it is important to keep calm so that you can describe what has actually happened to the doctor. Epilepsy is often difficult to diagnose and an accurate description of the event will help the doctor to arrive at a possible diagnosis and arrange the proper tests and treatment. Like many parents you may be wondering if it is something that you have done or not done which has caused the seizures but this is rarely the case. In many casse the cause will never be known despite advances in diagnostic tools such as electro encephalogram (EEG) and Magnetic Resonance Imaging (MRI) scans. For an explanation given by the Epilepsy Society of MRI click here and for EEG click here
You will need to ask questions and voice any worries you have to the GP or Paediatrician. Your doctor will give you information, advice and reassurance but in a busy surgery or clinic time is limited and you may forget to ask all the questions. The Paediatric Epilepsy Nurse Specialist will also help but his/her time is also limited.
You will be worried and upset to find that your child has epilepsy but remember that eight out of ten children with epilepsy lead trouble free enjoyable lives. The success of the treatment prescribed depends on following the advice given which may mean regularly taking medication for a period of years and in avoiding situations which may trigger seizures. Your child will need support and encouragement to accept this and to enjoy a normal happy childhood. We can provide reliable information on many aspects of epilepsy in children and young people including fact sheets about childhood epilepsy syndromes. You can find details of the Kent hildrens Epilepsy Nursing Service on https://tinyurl.com/ybqzfqv8
Support groups for many childhood syndromes including Sturge Weber, can be located on Self-help UK which provides a searchable data base of over 1000 self-help organizations and groups across the U.K. These offer support, guidance and advice to patients, carers and their relatives. Dravet UK 's website can be found here
For further information on epilepsy in children and young people contact Young Epilepsy
Young Epilepsy is the name for the oranisation at St Piers Lane, Lingfield Surrey which is the leading provider of specialist education and health services to children and young people with epilepsy across the UK. Over 60,000 children and young people have epilepsy in the UK – Young Epilepsy works to support them, their families and the professionals that work with them.The Champions for Childhood Epilepsy Campaign works in collaboration with professionals to provide training and support. With the aim of improving understanding and outcomes in education, health and other services across the UK. Schools can join the campaign, by nominating a member of staff to be their School Epilepsy Champion. To find out more about this rewarding and potentially life-changing role please email or phone the Campaign Team on 01342 831340
For information about children with complex needs the magazine SEN MAGAZINE provides a valuable source of information.