Uni Student with epilepsy

[Ali2012]

My 18 yo son started at Warwick uni this term. He's had epilepsy (partially) controlled by Keppra for 2 years.

On Thursday night he had his first seizure since he left home which we found out about when he messaged from A&E. He had been in a public place when the seizure happened and someone had called an ambulance. He was wearing a smart watch but the fall detector didn't get activated and nobody called the emergency numbers are on his bracelet.
We have spoken to him about the importance of good sleep hygiene as fatigue is a trigger for him.

I realise he is an adult and needs to live his life, but the thought of him having his next seizure when he's alone is making me extremely anxious. Is anyone living through something similar and can offer some advice?

It’s not exactly the same, but Dd was diagnosed with asthma 10 months ago. In the last 5 weeks she’s been to A&E twice (once in an ambulance) due to asthma flare-ups caused by viral chest infections/viral tonsillitis.

Her wonderful flatmates supported her, went with her to the hospital and kept in touch with me by text to let me know what was happening.

Do you have contact details of flatmates? I would highly recommend it, if possible.

Does he carry an id/wear a medic alert bracelet/pendant that links to information on his condition and your contact details? My dd had one through a scheme where we lived now defunct, but might be others, or make your own id card and laminate. As soon as she was old enough to go out without me she carried the cards I made (made multiple so one in every coat pocket, bag etc) and she’s been listed with various id schemes until she moved overseas. (Thankfully she has been free of episodes for 6 years now. )

He’s still in halls and hasn’t yet made any close friends on his corridor. I will ask him for the number of one of them though. I hope it will be better next year when he’s living with mates

Thanks. He has a bracelet but I think he’s lost all the cards I gave him! A reminder to make some more!

I’ve got epilepsy but unfortunately I learned the hard way that I need a do x,y,z to make sure I don’t have a seizure.

Your son might have to do the same, unfortunately.
He obviously already knows that the aftermath is bloody awful.
He might even be in denial.

Has he seen Neurology recently? If not I'd be trying to get him a review appointment so his meds can be looked at. Is there an Epilepsy Nurse on his team who he can contact by phone?

He’s definitely in denial. I’ve had to be brutally honest that the next time he could be on his own and wouldn’t be so lucky

Does he need an ambulance/medical care after a seizure? Many epileptics don't, they just need to rest/sleep it off. Does he have a plan in place for when he has a seizure? This might help focus him on what he needs to do and have in place.

I know it’s not what you want to hear but he needs to look after himself. SUDEPs is very real, injuries such as broken bones are very real,

he needs to get a grip with his diagnosis, take his meds absolutely correctly and be honest if he hasn’t and be aware of and avoid triggers as well as being aware of warning signs and be able to alert someone.

Is There a halls warden with a master key to his room if he’s poorly and needs help?

Usually he can sleep it off at home but he was taken to hospital by passersby

I’ve told him all
this and have asked his dad (my ex) to back me
up

Agree with @Ali2012 - you, he, his friends, and the halls warden if he is in halls needs to be aware of SUDEP. He needs to get enough sleep, (asking lecturers for deadline extensions if necessary and telling them why) and not to go overboard on alcohol. He needs to always remember to take his meds. My brother didn’t take his for two days after a year without a seizure and died from SUDEP.

I’m sorry for your loss @PauliesWalnuts
Thank you for the advice

He needs to play his part in keeping himself well: proper sleep, taking his meds, easing up on the alcohol/drugs, maybe.
Seeing the neuro nurse isn’t going to help him here.

Thank you everyone. Lots to digest. Help as to how to get a teenager to listen to me gratefully received

Thank you @Ali2012 .

What I would suggest he does is register with a GP if he hasn’t yet done so, and then ask to be assigned an epilepsy nurse (which may be at another surgery but who he’ll see every few months). If he is in denial try and spin it as someone who is trying to help keep his life as normal as possible. Because apart from keeping him safe from harm, that is what an epilepsy nurse is for.

Thanks. He has a GP but no specific epilepsy nurse. So helpful

He sure does. An Epilepsy Nurse is ideally placed to discuss all these things with him, as well as assessing whether he might need his medication titrated up. He’s also more likely to accept this advice from somebody who is not his parent.

Has he registered with Disability services at Warwick? They may be able to do a support plan.

That’s an excellent idea. Also, have a look at Disabled Student Allowance - there is additional support available but, of course, your son will have to be proactive about accessing it, once it’s agreed.