For parents
Epilepsy is a condition that affects approximately 1 in 200 children. It is a complex condition, with many causes, and can present in many ways. Diagnosis is not straightforward and may take months and possibly years as other conditions may need to be ruled out.
Identifying the types of seizures a child is experiencing is important to indicate the best form of treatment. Good eye witness accounts are critical and include identifying triggers that bring on a seizure. Tests such as EEG and MRI scans can also be useful and in some cases enable an epilepsy syndrome to be identified.
Once a diagnosis has been made parents will need to consider the treatments available. Antiepileptic drugs will be given to the majority of children with epilepsy but there are other treatments to be considered including:
- Epilepsy surgery
- Dietary treatments including the Ketogenic diet
- Vagus nerve stimulation
Emotional issues
Epilepsy is not just a medical condition. There are many emotional issues that may arise for the child and the whole family. The child’s school will need to be informed, and everyone around the child will need to know about first aid for seizures and what to do if a seizure lasts longer than expected. Schools will need to consider safety precautions to let the child take part in all activities.
It is important that family life continues as normally as possible. Parents will have to balance their desire to protect their child with the need to give them enough freedom to develop their self esteem. The needs of siblings are also important.
Growing up
As the child grows, new issues associated with their epilepsy may arise. Many changes will take place as the child enters adolescence, changes schools, moves to adult health care services, and starts work or university. Parents, together with their child, can help by keeping good records which can be shared along the way as appropriate. Healthcare professionals will be involved in developing some of these such as individual healthcare plans and emergency medication protocols.
Parents can empower themselves and their family by learning as much as possible about epilepsy. There are many websites and forums, books and DVDs available to help gain a really good understanding of the condition.
Young Epilespsy also holds an annual Parents and Families Day where people can meet and learn more about epilepsy from leading specialists. Parents can also meet each other and start to develop support networks.
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