What’s next after a child’s epilepsy diagnosis?
Speaks to an expert to find out more
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.
“If you don’t understand an answer, don’t be afraid to ask the doctor, specialist or nurse to make it clearer.”
Marianna says parents need to agree an epilepsy care plan with their child’s doctor, and should be sure they understand it fully.
Parents will probably have to manage multiple medications and this can be confusing, so make sure instructions – dosage, frequency, times, etc – are written down in an easy-to-understand way. “Although your doctor can’t know everything that’s going to happen, it’s OK to ask about the future,” Marianna adds.
This could include long-term prognosis, whether your child could control or grow out of their seizures, what to expect over coming months and years, and the impact on your child’s development.”
A Young Epilepsy survey found 77% of young people said living with epilepsy had a significant impact on their mental wellbeing, while more than half didn’t find it easy to talk about their feelings with friends and family.
Another survey by the charity found one in three children with epilepsy don’t get the right support at school.
The #UnderstandMyEpilepsy campaign is calling for all schools to ensure every young person with epilepsy has an Individual Healthcare Plan, which helps schools understand a child’s epilepsy and help they may need to reach their full potential.
“A lot of the time, we get young people that come to us that are extremely socially isolated,” Marianna says. “They’re told they can’t do normal things that they’d do with their friends. A lot of the time, they’re excluded from school trips, and from taking part in PE, and all those kinds of things.
“So we come in as a support network to let them know what their rights are, and to empower parents to know what their rights are as well.”