Parent of newly diagnosed teenager

[Fern70]

My 16 yr old son has received a diagnosis, having had two focal epilepsy seizures out of the blue (TC ones on awakening, which we've witnessed and called emergency services). He's now on Keppra and I guess we won't know how effective it is until months have passed without more episodes. He doesn't want to talk about it and we're trying hard to give him the space he clearly needs. He has great friends and is partying quite a lot to find his way through this. I'm quietly beside myself about further seizures and in fear each morning in case he's had a dangerous one alone in his room, without help and we loose him. How do others get through this?

[EpilepsyAction1 Partner Epilepsy Action]

Hi Fern70It must be a very difficult time for you and your son. Living with the uncertainty of his seizures is definitely not easy so I hope our information will be of help to you both.

It’s still early days with his treatment but many people with newly-diagnosed epilepsy respond well to epilepsy medicine and have fewer seizures. For many their seizures stop altogether and their quality of life improves.

epilepsy.org.uk/info/treatm...

If your son decides to look for information about living with epilepsy, he may find the following helpful.

epilepsy.org.uk/info/childr...

epilepsyspace.org.uk/

hub.thechannel.org.uk/

I fully understand your concerns that your son might have a dangerous seizure. Although it rarely happens, it’s important to know about this risk. Most of the time, people with epilepsy recover perfectly well after a seizure, but people can die from their epilepsy. The most effective way to reduce the risk of death due to epilepsy is to have as few seizures as possible.

epilepsy.org.uk/info/sudep-...

epilepsy.org.uk/info/treatm...

We have some general information around safety. Some people may look into alarms and monitors. Some parents we’ve spoken to, have used a baby intercom that can pick up sound. This may be a noise their child makes during their seizure. Or there could be something securely attached to their bed that makes a noise when the child moves. Someone has told us about tying small bells on to the bed.

epilepsy.org.uk/info/daily-...

If you look at previous posts on here you will see another post from a mum supporting her daughter following a diagnosis of epilepsy. It’s the teenager in denial post.

Finally, you or your son could always talk to one of us, Advice and Information Officers, on the Epilepsy Helpline (freephone) 0808 800 5050. Callers to the Helpline will receive a friendly welcome and can discuss any concerns confidentially. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[Fern70 in reply to EpilepsyAction1]

Thank you Diane, that is all really helpful. I appreciate it. I'm planning to join one of the virtual meet ups soon.

[JK1967]

My 16 yo daughter dx 2 years ago and keppra working really well at 500mg morning and evening. It’s not easy and really hard to not worry all the time but they need their independence still. Epilepsy.org is fabulous for info for both parents and kids. Top tip for teens going out lots-get a pill capsule to go on their keyring then they don’t have to come home for meds.

[Jamaicangirl]

What do you mean by partying a lot?Also, does he drive and does he have rescue medications at school?

[Fern70]

Hi. Sorry, didn't see your message. Thank you for asking.By partying I mean staying out late so his sleeping patterns are irregular. Drinks alcohol but I know he wouldn't take any recreational drugs. He doesn't drive.

Doesn't have a rescue medication which I find very strange. I've pressed the hospital about this repeatedly and they said it has to be prescribed by the neurologist and he will review in 6 months time. I've fought back for a 3 month next appt instead. Anything can happen in 3 months! I've been told to wait and if he has another seizure which lasts more than 5 mins call an ambulance. Seriously, if my son is having another tonic clonic seizure I'm not going to do nothing, I am going to call for help. I know we have to let the meds settle but I also know that the journey to discovering the right level of meds will be based on whether he has more seizures or not. I can't understand how the process is so slow.

How are you?