I’m scared I’ll do the wrong thing!

Dear Jake,

It’s great to hear that you want to learn more about 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.

Here are some more tips about how to help your brother when a seizure has made him fall to the floor and his arms and legs to shake or jerk:

• 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 special medicine that can stop the jerking; your parents may have some of this as well.)
• Most seizures stop jerking on their own before 5 minutes and it is good to 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 out for an adult to help you, or send somebody else to get one. I’m sure you would do a brilliant job, but no one expects you to do it all by yourself!

All the best,

Charlie.

My parents are treating me like a prisoner!

Dear R,

I’m sorry to hear you are having problems with your parents. 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.

My advice would be to try talking to them about this at a calm time - not in the middle of an argument! You could even write them a letter to make sure you include all the things you want to say. Tell them that you do not want your epilepsy to stop you from doing the things you enjoy because this leaves you feeling left out with your friends and lonely.

Your parents are much more likely to let you do things if they feel you understand the importance of taking care of yourself, even when you are not with them. For example, these are some things you could suggest to your parents that might make them feel less worried about a sleep over:

• 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 to the sleepover after you have suggested these things, perhaps you could agree to have the sleepover at your house - I’m sure your friends would be just fine if you explained the reasons why. 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.

All the best,

Charlie

It’s really embarrassing!

Dear Theo,

I am sorry you feel embarrassed about your epilepsy. 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, you need to make sure your teacher understands that you have a problem and it is making you unhappy. Absence seizures are really difficult for people to notice, particularly in a busy classroom. Could you get your mum or dad to talk to your teacher about your epilepsy? It would be useful if you were there as well, so that you could explain what has been happening and how you feel your absences are affecting you in class.

There are lots of things your teacher could do to help you in class 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. For example, some children might work out a way they can discreetly tell their teacher that they have had an absence and missed some information. Other children might feel uncomfortable doing this, and prefer to have the information written down so that they can read it and not have to ask if they have had an absence. You should also ask your teacher to check that you have your homework written down properly at the end of each day – this way you won’t get in trouble!

If you have a good friend who knows about your epilepsy, you could ask them to explain to you anything you might have missed.

Be brave Theo, and talk to your teacher – they are there to help you learn and make sure you are happy!

Charlie

They keep whispering about me!

Dear X,

The 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, it is also possible that you will not have another seizure and so instead of spending the time waiting and worrying about something that may not happen, it is really important for you to try 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 possibly 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 about it or think it may upset you if they do.

Often, children are 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 ask your mum to ask your teacher) to talk to the class about the condition and what it might feel like to have it.

However, 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 an adult about it, such as your parents or teacher, so they can make it stop.

Good luck!

Charlie