If you have seizures or epilepsy and are starting back to school, you’ve probably got a lot on your mind. The usual rush to get school supplies, learn your class schedule and meet new people may be mixed with thoughts about your seizures.
Here are a few questions and tips for kids and teens to think about as they return to school. If these issues are on your mind, talk about them with a parent, your doctor, nurse or teacher. Having a plan on how to deal with these things may make school time easier and help you feel more in control of your epilepsy!
What happens if I have a seizure in school? Do I need to do anything special?
The answer to this depends on what kind of seizure you have and how often. People with well-controlled seizures don’t need to do anything special. Your school nurse should know about your seizures and what to do if one happens. She can then make sure the teachers, coaches or other school personnel around you know what to do if a seizure occurs.
If you are still having seizures, talk to your parents and school nurse before school starts or as soon as you can. Make sure you are involved in making plans for managing your seizures.
- For example, are your seizures short and do you recover quickly? If so, you shouldn’t have to leave the classroom just because of a seizure. If you’re tired, confused or need some time to rest and get cleaned up after a seizure, then you’ll want to know where can you do this. Can you go to the nurse’s office or is there someplace else for you to recover?
- Kids should not need to leave school just because they have a seizure. Sometimes, it makes sense to go home after a seizure if it takes too long for you to feel back to normal or you have trouble paying attention or participating in class after one. If this happens to you, talk to your parents and school nurse about when you should go home and when you should try and get back to class as soon as you can. Don’t let them send you home because someone is nervous about the seizures. Try not to let seizures (or other people) stand in your way!
Do you need to have a medicine if you have more seizures than usual?
Most kids with seizures will take medicines each day to help control seizures. Some people may have seizures that come in clusters, meaning they may have more than one at a time or over the course of a day.
- If you tend to have seizures like this, your health care team may suggest you take an extra medicine (called a rescue medicine) only when you have a cluster of seizures. Ideally this medicine will stop the cluster, make them shorter, or help you recover more quickly.
- Talk to your epilepsy team and parents to see if you need to have a rescue medicine, just in case you have a cluster of seizures. Make sure you understand when and how it should be given.
- One of the commonly used medicines, called Diastat, is given like a suppository. While this can be done in schools pretty easily, you might not like this approach. There are medicines that can melt under your tongue or be given like a nasal spray. Some of these are still being developed and we hope to see them soon. These will be much easier to use in school settings to stop seizure clusters.
What will other kids think if they see me during a seizure?
Many children and teens get embarrassed if they have a seizure in public. So do adults. Seizures may make you feel like you don’t have control over your body or brain. They may make you feel “different.” You may be afraid that others will think “bad” of you or be scared.
You are right that during a seizure you may not have control of what happens or be aware of what goes on around you. You may not be able to remember everything either.
- BUT, having a seizure doesn’t mean you’re a “bad” person, “crazy” or out of control.
- It DOES mean you have a medical problem that needs treatment. Just like someone with diabetes will need medicine or a child with asthma needs an inhaler.
- Are you different? I hope so… you are different and unique just like all your friends are, just like the child with diabetes or asthma. It just happens that you were given the challenge of living with seizures. The challenges may be very hard at times. Yet as you get older and learn how to cope with them, you (and your friends) will find ways of dealing with the challenges and learn from them.
Should I tell other kids about seizures?
Most often, kids want to keep their seizures private, which is normal. But it may be a good idea to tell some kids you hang out with, the school nurse (of course) and your teachers, especially if your seizures aren’t controlled. Deciding who to tell, when and how much depends on why they should know, and how comfortable you feel talking about epilepsy. A few thoughts…
- Don’t avoid talking about it because you are scared of what others think. If someone doesn’t take it well and doesn’t try to understand you, then they aren’t too good of a friend, are they? Let them go.
- If you are scared of the seizures, others will be scared too. Talk about your own feelings first with your family, health care team, or counselor. If you feel more comfortable with having epilepsy, others will too.
- Telling others can be a big relief for you. It takes a lot of energy to keep secrets. Once you can talk about having epilepsy, you’ll probably find that you’re feeling better about yourself.
Growing up with epilepsy is not easy. Dealing with it in school can be a pain too. But if you have seizures, this will be a part of your life. If you can take charge, learn about it and have people around you to help, it makes a huge difference.
Here are a few places for kids and teens to find information about seizures. If you are 13 years or older, you can also join our community forums to talk with others your age.
- Talking to others
- Information for youth with seizures
- Seizures in high school
- Seizure first aid
- Community Forums – Teen Zone
Wishing you the best as you start your new school year. Remember, don’t let epilepsy, or other people, stand in your way!
Have a great week!
Patty Osborne Shafer RN, MN
Associate Editor/ Community Manager