Patient discussions
Parents and children (if old enough) should be fully informed about their condition, the causes, the importance of preventative therapy, adverse effects they may expect and when to report them, and how to manage a seizure if one does occur. This should be explained to children in terms that they understand.[27]
Patients and/or parents should be encouraged to keep a detailed calendar of any seizures that occur, with a brief description of any possible precipitating factors, length of seizure, characteristics of seizure, post-ictal phenomena, and any changes in treatment (e.g., dose escalations, changes in drugs).
If a generic bioequivalent anticonvulsant drug replaces a brand product, parents and patients should be reassured about equivalent effectiveness, and informed if there are any changes in colour or shape.[182]
Support and communication are essential for the child and their family.[27][127] Various education and counselling programmes for children with epilepsy and parents exist, but there is insufficient evidence to recommend one over another.[183] A multi-disciplinary team approach is key, with involvement of doctors, nurses, pharmacists, physiotherapists, psychologists, social workers, education specialists, and support groups. It is vital to ensure that each child receives regular coordinated reviews of their epilepsy management.[27] Education of parents, teachers, and peers can minimise the impact of the condition on the patient's quality of life. Epilepsy Society (UK) Opens in new window Epilepsy Foundation Opens in new window
To minimise the risk of injuries and death, general recommendations for everyday life include:
Young children should not be left in the bath alone.
Bathroom or bedroom doors should be left unlocked.
Fireplaces and cookers should be shielded.
Contact sports should be avoided. Other sports and swimming are possible but should take place under the supervision of instructors or trainers who have been trained in what to do in case of a seizure.
Driving may need to be restricted or forbidden; this is regulated by law and varies from country to country.
Level of risk of seizure recurrence associated with sleep deprivation or alcohol consumption should be discussed.
Unnecessary restrictions should be avoided.
If discontinuation of anticonvulsant medication is being considered for patients who have been seizure-free for 18-24 months and who do not have an electroclinical syndrome suggesting otherwise, discuss the risks and benefits of discontinuation with the patient and their family, including the risks of seizure recurrence and treatment resistance. Individual patient characteristics and preferences, including quality of life considerations, should be taken into account.[147]
Contraception and pregnancy
Education about effective contraceptive options and potential adverse pregnancy outcomes should start in early adolescence and continue throughout a patient's reproductive life. Puberty may be associated with increased seizure activity, and patients with epilepsy are more likely to experience anovulatory cycles and irregular menstrual bleeding.[48]
Patients of child-bearing potential should be informed that they must follow a pregnancy prevention programme while on treatment with valproate medicines. For EU countries, the European Medicines Agency states that this programme should include:[49]
An assessment of the patient's potential for becoming pregnant
Pregnancy tests before starting and during treatment as needed
Counselling about the risks of valproate treatment and the need for effective contraception throughout treatment
A review of ongoing treatment by a specialist at least annually
A risk acknowledgement form that patients and prescribers will go through at each such annual review to confirm that appropriate advice has been given and understood.
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