If your child has epilepsy, starting school might feel quite daunting for both of you, but it doesn’t have to be. Kathy Bairstow, Senior Advice and Information Officer at Epilepsy Action, explains what you can do to make your schoolchild’s life that bit easier.
What is epilepsy?
Epilepsy is the medical term for recurrent seizures, which happen when the brain’s messages become mixed up due to intense electrical brain activity. For more information on the different types of epilepsy, see our guide to what is epilepsy?
“Quite often, epilepsy is discovered when a child goes to school and their teacher notices that the child’s ability to understand or take part fluctuates,” explains Kathy.
While your child’s teacher isn’t qualified to tell you that your child has epilepsy, they may be able to point you in the right direction of an epilepsy specialist.
If your child is diagnosed with epilepsy, should you speak to your child’s school?
Yes, definitely. “If you’ve got a child with active epilepsy, you and your child’s teacher need to be partners,” explains Kathy.
“For example, if you’re a teacher and you knew a child was having frequent absences, you might ask them extra questions at the end of the lesson or you might make some notes to give them at the end of the lesson so they know exactly what’s going on and haven’t missed anything.”
Epilepsy Action recommends that all schoolchildren with epilepsy have an Individual Healthcare Plan (IHP). The IHP provides your child’s school with all the relevant information about their individual epilepsy, medication and emergency information, as this may be different for every child. You can download an IHP for free here, but it should be filled in under supervision of an epileptic specialist or an epileptic specialist nurse. There might even be a school nurse involved, as extra training might be needed for school staff.
Will the school need to be told about medication?
Generally speaking, your child won’t need to take medicine during the school day, apart from emergency medicine if a situation arises. Most of the modern medicines are taken twice a day, for example at 7 o’clock in the morning with breakfast and again at 7 o’clock in the evening with dinner. Anti-epilepsy medication is designed to stop the seizures. For some children this will work, whereas for other children it may just mean fewer seizures.
“We suggest mums set an alarm on their mobile phones at the times when their child needs to have the anti-epilepsy medicine. Mobile phones are good because you can be out and about and no one will know what the alarm is for, so you keep your privacy if you wish,” says Kathy.
However, the school will need to know all the details about your child’s epilepsy, including the frequency of seizures, as this is completely dependent on the individual.
“For some children in an extreme situation, they might have a seizure every day, but for others it might be once a year. That’s why the Individual Healthcare Plans are really useful, because you write down exactly what happens to your child. There should never be any assumptions that every child is the same,” explains Kathy.
The most common reason for seizures is missing medication, so make sure your schoolchild knows when to take their medicine and sticks to the routine.
What will happen if your child does have an epileptic fit at school?
If a child has a seizure at school, and it’s the first time it’s happened, the school will call an ambulance and your child will be taken to hospital. There’s no need to worry though, because once your child is at hospital, he or she will be assessed and if diagnosed with epilepsy, transferred to an epilepsy specialist who will explain everything to you.
If your child has been diagnosed with epilepsy and the school already knows, their IHP will be brought out and referred to during the situation. For most children it’s a case of putting them into the recovery position and letting them rest, however sometimes, children can have prolonged seizures and may need rescue medication to be brought round.
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One type of rescue medicine is called Midazolam, which is inserted into the mouth to stop the seizures. This rescue medication is prescribed by your child’s doctor and the details for your individual child will be written down on their IHP.
“Your child’s IHP will say, ‘After so many minutes, give rescue medication to bring the child out of the seizure.’ The amount of minutes will depend on each child,” explains Kathy.
A general guideline school’s will follow is that after 5 minutes, an ambulance will be called. Your child’s IHP will say where the rescue medication is kept within the school and exactly who has been trained to give it. It will also provide details on what to do after a seizure.
“However, the majority of children who have been diagnosed with epilepsy, 6 out of 10 to be exact, won’t have seizures anymore because their medication controls their epilepsy,” says Kathy.
What can you do to protect your child at home?
It’s important that you know and understand your child’s epilepsy, so take appropriate safety measures accordingly.
The real key to protecting your child at home is common sense, regardless of whether they have epilepsy or not. “You can’t make an environment 100% safe. Yes a child could fall down the stairs when they’re having a seizure, but any child could fall down the stairs,” says Kathy.
One tip Kathy has is that, if your schoolchild always has a seizure within an hour or two of waking up, then you might say to them, ‘Don’t have a shower unless someone knows you’re in there,” or you might make sure your child has their shower in the evening instead.
If you’re ever worried about your child’s epilepsy or need further advice, call the Epilepsy Action helpline on 0808 800 5050 or visit www.epilepsy.org.uk.