Here are Charlie's answers to the epilepsy questions that you can find in our printed magazines.
Magazines for children (KS2)
I’m scared I’ll do the wrong thingIt’s great to hear that you want to learn how to help look after your brother if he has a seizure.
You are right it is important to put something soft between his head and the floor to protect it; seizures often happen so suddenly that the person does not have time to get to a safe, soft place. If his arms or legs were banging against the wall, you could also put something soft between him and the wall.
More tips about how to help your brother:
- Clear objects out of the way so that he has room to move without banging against anything.
- Time how long the seizure carries on for.
- Call an ambulance if the jerking lasts for longer than 5 minutes, because it can be very tiring for him. (The ambulance crew have medicine that can stop the jerking; your parents may have some of this as well).
- Most seizures stop on their own before 5 minutes. Afterwards roll him onto his side then and let him rest.
- Talk to him during the seizure, reassuring him that he will be okay, because he may be able to hear you before he can move or answer you and it would be good for him to hear a familiar voice.
Whilst there are lots of things you can do to help your brother, it is really important you call for an adult to help , or send somebody to get one. I’m sure you would do a brilliant job, but no one expects you to do it all by yourself.
My parents are treating me like a prisoner!Although it may seem like they are being unfair, they are probably just worried about your safety and what might happen if you had a seizure during a sleepover and they were not there to help you.
Try talking to them about this at a calm time - not in the middle of an argument! You could even write them a letter and include all the things you want to say. Talk to them and explain that you do not want epilepsy to stop you from doing the things you enjoy, because this leaves you feeling left out with your friends.
Your parents are more likely to let you do things if they feel you understand the importance of taking care of yourself, when you are not with them. These are some things you could suggest that might make them feel less worried:
- Ask your parents to talk to your friend’s parents so that they know about your epilepsy and what to do if you have a seizure.
- Agree to call your parents in the evening to let them know you are okay.
- Agree to go to sleep at a reasonable time.
- Make sure your friends know what to do if you have a seizure.
- Give your friends and their parents your parents’ telephone number in case of emergency.
If your parents still say no, perhaps you could agree to have the sleepover at your house? Then, next time, you could ask to sleepover at your friend’s house again, reminding them that the first sleepover did not cause any problems.
It’s really embarrassing...Epilepsy is one of many medical conditions that can affect anybody, at any age; diabetes and asthma are two other common ones. In fact, there are over 64,000 children up to the age of 18 years with epilepsy in the UK - so you are not alone.
Firstly, make sure your teacher understands that you have a problem and that you're unhappy. It's hard to notice absence seizures, particularly in a busy classroom.
Could your mum or dad to talk to your teacher about your epilepsy? If you were also there, you could explain what has been happening and how your absences are affecting you in class.
There are lots of ways your teacher could help you with if your absences are causing you to miss bits of your lessons. Again, it would be good if you could discuss this with your parents and teacher because everyone learns differently.
Some children might discreetly tell their teacher that they have had an absence and missed some information. Others may prefer to have the information written down so that they can read it and not have to say if they have had an absence.
You should also ask your teacher to check that you have written your homework down properly at the end of the day. If you have a good friend who knows about your epilepsy, you could ask them to explain to you anything you might have missed.
Have courage and talk to your teacher – they are there to help you learn.
They keep whispering about meThe medicine you are taking can help to stop seizures, but as they often happen without any warning, it is not surprising that you are worried in case they happen again.
However, you may not have another seizure so try to stop waiting and worrying about something that may not happen. Its really important to carry on doing all of the things you enjoyed doing before you found out you had epilepsy. Talk to your parents about how you feel because they may be able to help more.
Your friends could be avoiding you and maybe talking about you privately, because they are worried about what happened and do not understand what epilepsy is or how to look after you if it happened again. They might be too embarrassed to ask you or think it may upset you if they do.
Often people much kinder and more understanding once they know what epilepsy is and what they can do to help someone having a seizure. If you don’t feel comfortable explaining this to your friends yourself, perhaps you could ask your teacher (or your mum to ask your teacher) to talk to the class about the condition and what it might feel like to have it.
But if your classmates are saying horrible things about you that are hurting your feelings, then this is a kind of bullying and you need to tell your parents or teacher about it so they can make it stop.
Magazines for young people (KS23)
I’ve been ignoring his textsIt sounds like your friend had a tonic-clonic seizure in the park last week.
You don’t need to feel bad about being scared; seeing somebody have a seizure, especially for the first time, can be a scary and very unsettling experience. You did the right thing by getting somebody else to help you, well done!
Epilepsy can be different for each person and so you should ask your friend what usually happens when he has a seizure so that you know what to expect if it happens again. Knowing what to do can help you feel more prepared and less likely to panic.
Here are some general tips:
- Clear objects out of the way so he has room to move without banging against anything.
- Cushion the impact between him and hard surfaces, for example put something soft between his head and the floor and between him and a wall.
- Time how long the seizure lasts.
- Get an adult to help you.
- Call an ambulance if he injures himself or if the seizure carries on for more than 5 minutes.
- When the jerking has stopped, roll him onto his side and let him rest.
- Call his mum or dad and tell them what has happened.
Your friend is probably as upset about this as you are and may even be a bit embarrassed too. Be honest and say you haven’t text yet because you were unsure about what to say and needed time to think.
Explain that you would feel much better if you knew a more about his epilepsy and how to help. Your friend will probably feel much more confident getting on with his life if he knows he has friends like you who understand about his epilepsy.
My boyfriend won’t talk to me about his epilepsyEpilepsy is a medical condition that affects approximately 63,000 children and young people in the UK aged 18 and under. People with epilepsy can experience sudden bursts of electrical activity in their brain, this is called a seizure.
This can happen suddenly and they are unable to stop it. There are lots of different types of seizures and each person will experience something unique to them.
Seizures often come without warning and although he may be taking medication which helps to prevent seizures, he may still be worried in case he has one and how you might react.
If you don’t think he is ready to listen, you could email or text him saying that it’s okay if he doesn’t want to talk about his epilepsy yet, but when he is you are ready to listen.
Tell him you’d like to know about it so that you can understand how it affects him and know how to help him if he needs it.
My parents are treating me like a prisonerMost people think their parents are horribly overprotective. Letting go is difficult for any parent, and is likely to be even harder if they’re worried about safety issues to do with your epilepsy.
Try talking to them about this at a calm time, not in the middle an argument.
Remind them that independence and an active social life are what everyone your age wants and needs. Explain that the fewer restrictions put on you because of your epilepsy, the less likely you are to feel isolated from your friends and get withdrawn.
You’re far more likely to get a bit of independence once they’re confident you fully understand the importance of taking care of yourself, and be trusted to do so in any company. Here are a few things that might help:
- Ask your parents to talk to your friend’s parents so that they are aware of your epilepsy and know what to do if you have a seizure.
- Agree to give them a call or send them a text in the evening to reassure them you are okay.
- Talk to your friends and make sure they know what to do if you have a seizure.
- Make sure your friends and their parents have your parent’s telephone number in case of emergency.
If you can’t persuade them after a couple of calm discussions, perhaps you could have the sleepover at your house. Then next time, you could try again and suggest that you can be trusted to stay at someone else’s house.
Should I tell them about my epilepsy?Epilepsy should not be a barrier to your success and in fact lots of successful sports men and women have epilepsy – including Olympic hurdler Dai Greene and Gillingham footballer Leon Legge.
Epilepsy is covered by discrimination laws, it is actually against the law to discriminate against people because of their epilepsy.
You may be asked to complete a health questionnaire before your trial and interview; however you do not have to declare your epilepsy unless it is likely to prevent you from doing the job.
If your seizures are well controlled with medication, then this is unlikely to be the case. If it comes up at the interview, you should answer honestly and this will give you a chance to explain how you manage your epilepsy.
If they don’t bring the subject up you don’t need to mention it at the interview unless you want to.
However, if you are successful at the trail, your cousin is right in that it would be a good idea to explain about your epilepsy before your start so that they are aware of how to help you should you need it.