Top 10 tips from parents
When your child has epilepsy, it’s good to make the most of all medical consultations and appointments. Here, you’ll find some useful tips from other parents, based on their experience.
Keep a record of all seizures in your child’s epilepsy diary, including any suspected seizure activity that concerns you – and remember to bring it to appointments. We suggest parents and/or carers take videos of seizures to show the Epilepsy Nurse or doctor.
You can find out more here about keeping accurate seizure records and download a useful ‘Keeping records’ infographic.
For pre-school children, remember also to take your ‘red book’ to appointments with all of the healthcare professionals involved in your child’s care, so it can be kept up to date.
Before an appointment, write down any questions you have, as it’s easy to forget them when you’re in the clinic or distracted by your child.
No question is silly or irrelevant, so say what’s on your mind, because you may regret it if you don’t.
Make sure you get answers to all your questions. If you don’t understand an answer, don’t be afraid to ask the doctor, specialist or nurse to make it clearer.
Agree an epilepsy care plan with your doctor and make sure you understand it fully before you leave.
Speak up if you feel changes are needed to improve your child’s seizure control, and discuss any side effects you think your child’s experiencing
Managing multiple medications can be confusing, so make sure instructions about medications – dosage, frequency, times, etc – are written down in a way you can easily follow afterwards.
Find out more about anti-seizure medications.
Ask about epilepsy emergency medication and, if it is prescribed, make sure you understand when it should be given.
Instructions for emergency medication can be written down in an ‘emergency protocol’, a document that can be used if your child has a prolonged seizure.
Although your doctor can’t know everything that’s going to happen, it’s OK to ask about the future. This could include:
- Long-term prognosis (likely outcome of your child’s epilepsy)
- Whether your child is likely to be able to control their seizures or grow out of them
- What you should expect over the coming months and years
- What the impact will be on your child’s development
