Parent of teen with Epilepsy

[Cerida]

Hi I’m new to the group. My 14yr old just been diagnosed with Focal Epilepsy. Started on Lamotrigine. Just wondered if any other parents of recent diagnosed teens on here x

[EpilepsyAction1 Partner Epilepsy Action]

Hi

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have lots of information for parents on our website that you may may find helpful: epilepsy.org.uk/info/childr...

We have our virtual talk and support groups epilepsy.org.uk/virtual-groups. We have our forum4e online community epilepsy.org.uk/search/goog..., and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5pm and Saturday 10am until 4pm.

Regards

Jess

Epilepsy Action Helpline Team

[Foxlcfc]

Hi yes my daughter who is 13 finally got diagnosed last week. My Gp thought it was night terrors.

[JK1967]

My daughter was dx with juvenile myoclonic epilepsy 18 months ago. Found amazing info and resources on the epilepsy.org.uk website. Really helpful were credit card size leaflets which I order so she can give to her friends so they know what to do. It’s been a scary ride but so far with meds (keppra) we’re managing it. Best advice consultant gave us was not to wrap her in cotton wool. She’s almost 16 and as hard as it is I think we’ve managed to give her independence while being mindful of certain things- no swimming on her own, no bath on her own. Epilepsy nurse has also been brilliant and a great first port of call if we have any concerns.

[Cerida in reply to JK1967]

Ah Thankyou… yes very scary indeed at the minute. All I seem to read is negative stories. I am mindful he needs his independence but it’s very hard as a parent at the minute. Hoping meds work soon 🤞🏼

[Ferifree]

Hi Cerida,My son was diagnosed with epilepsy when he was 13 and he is turning 15 in a month. we changed his doctor 3 times and still, we are looking for someone who can help us to diagnose the issue and find proper medication and treatment.

He started with Keppra which was awful and in a long story, we reached Lamotrigine and clobazam and yet, we are waiting for the right dosage for him.

[Calamity-Jane]

Hi Cerida

Following 2 seizures last year, my son was diagnosed at 16 with focal epilepsy, however after a sleep EEG it was confirmed as generalised epilepsy. He is on lamotrigine which so far appears to be managed ( 10 months seizure feee) It is an emotional roller coaster especially when you read the negative stories, I used to search for positive epilepsy stories which are very inspiring. My son goes about his life normally but we are mindful he needs to eat and sleep well and needs reminding to take his meds!

My GP recommended a smart watch incase he should have a seizure and not have his phone to hand, this helped me enormously to feel less anxious.

Wishing you and your teen all the best.

[Cerida in reply to Calamity-Jane]

Thankyou so much! Needed to hear this!! Probably the first positive story I’ve heard. Yes, it’s been so scary. So glad to hear your son’s seizures are being controlled.

My son started Lamotrigine 4 weeks ago, is currently on 75mgs at the moment but is increasing gradually. What dose is your son on? Hope you don’t mind me asking. Wishing you all the best xx

[Calamity-Jane in reply to Cerida]

Happy to help! My son started initially on 50mg morning and night, overall 100mgs. Following a confirmed diagnosis after the sleep deprivation EEG he now takes 75mgs morning and night.

He had his first seizure late evening ( also experienced a aura ) and second a month later first thing in the morning

All the best. X

[Cerida in reply to Calamity-Jane]

Thankyou. My son has had 4 tonic clonic seizures and all have them been within an hour of waking up. No auras. Hoping the tablets work. Thanks again xx

[Calamity-Jane in reply to Cerida]

It’s not nice to see our loved ones having a seizure but good your son is now on meds and being monitored, it’s a slow process getting them up to their prescribed dose but hopefully things will settle down. X

[runningmad]

Hello! Im in the same boat really - my daughter had a seizure out of NOWHERE in September last year (she was 17), we were then ambulanced to hospital where she promptly had another. She was on day 9 of having Covid and seemingly fine.. She has since had another seizure whilst out with her friends and in a supermarket.

Single-handedly the most terrifying thing for a parent to witness. I dont think ive slept properly since September last year. She is now on Lamotragine 200mg a day. She wants to go to University in September which is making me ill with worry however I know she needs to do what she wants! She had just started driving lessons, we had bought her a car and then we had to sell it as her licence was revoked due to the seizures - she was and still is truly gutted about her independence being compromised!

Im currently trying to source all the info needed for reductions in rail and bus travel - but thats a whole new world of pain!!

She had feberal convulsions as a toddler but nothing until turning 17! Crazy. As a family we are trying to normalise this for her but its hard when she has to have a bath with the door open!!

X

[Cerida in reply to runningmad]

I totally understand… it’s so frightening!! As a family we are trying to get our heads round it all. I’m the same… haven’t slept since his first one last November. Since being on meds he (touch wood) hasn’t had another one… yet!! He wants to do all the things his mates are doing… sleepovers, swimming, beach etc. I’m terrified and getting on his nerves with being his constant shadow! 🙈

[runningmad]

Yep me too - We had a BIG talk about going on holiday (she wanted to go with a gaggle of friends)…. She isn’t going - the thought of her being in a club in zante having a seizure with a lot of drunk kids nearly makes me want to pass out!! Anyway she HAS got a smart watch out of it and I’m TRYING to not ask her every evening/night if she’s taken her meds and running out if excuses to check on her whenever she’s out/at college/on bus/train etc!!!! It’s hard because she says “I’ve only had 3 little seizures” ??????!!!!! 🤦‍♀️ They most certainly ARENT ‘little’ when you witness them….!! My husband, younger daughter and still have a slight haunted look about us having witnessed!!!

BTW we are too Clonic tonic, had the MRI (all ok) but still awaiting EEG… she has no warnings or auras and her last seizure was when she was walking so she fell hard and smashed up her face at the same time…hideous.

Epilepsy nurse has been Amazing tho - wish I’d seen her sooner.

[Cerida in reply to runningmad]

I’m totally with you… my son keeps saying stop fussing… only had 4 seizures. They will live with me all my life now!! Will never get used to them. I keep thinking about them every day and night!Dreading when he’s older and wanting to go out drinking/hols etc. Breaks my heart to know he won’t be able to live a ‘normal’ life!!

We had to wait ages for his EEG and had to go private for MRI 😕

[Fern70]

Hi. I've just joined and read your message. My 16 yr old had a seizure 6 months ago and another just recently. We are all struggling and the NHS has been so slow. How are you doing now?

[Cerida in reply to Fern70]

Hiya, yes my son had a seizure out the blue on his 14th birthday 😞He went to A&E and was referred to ‘first seizure clinic’ and for an EEG.

He had another 2 in December and January.

I had to chase up appt and EEG. He finally had it in January. Then I had to chase up for those results. Eventually had appt in February where he was out on medication. We had a private MRI scan as the NHS waiting time was awful.

Since being on medication he hasn’t had any seizures (touch wood).

We have 4 monthly reviews now.

Very scary times. And I don’t think I will ever come to terms with this. I worry constantly x

[Fern70 in reply to Cerida]

I'm worrying all the time too. Recalling the seizures is in my head when I fall asleep each night and it's the first image I see on waking too. I can't tell my son this - the epilepsy is about him not me. He has always wanted to be a pilot but that won't be happening now. I'm scared he will have another one, even though he is now on Keppra, because I read that it lessens the chances of seizures. x

[Cerida in reply to Fern70]

I know… I feel exactly the same. Has he had any since being on the meds? My son wasn’t offered keppra. He takes Lamotrigine

[Fern70]

Not since the meds but he only started taking them for the first time last month. We were in Spain and he had his second seizure, rushed into hospital where he had a CT scan. It was so frightening. They gave excellent care and the neurologist there put him on Keppra. Two weeks ago we finally saw a consultant here (over five months since first seizure) - he is keeping him on those meds. He had the MRI/EEG in May so I feel let down that there was such a huge delay between those findings and the results. We would not have gone abroad if we'd known. We were convinced it was a one off. Do you think we will get some kind of care plan or specialist support from the NHS? It's like feeling around in the dark....

[Cerida in reply to Fern70]

Yes your son should be under specialist and have regular reviews. We also see the epilepsy nurse in between. And we can ring her anytime. My sons mri was normal. His eeg showed signs of generalised epilepsy. Some spikes or something. Really hard to understand and get my head round it all as epilepsy is so complex

[Fern70]

Thanks - good to know. It is hard to understand isn't it. It's really helping me to talk on this forum - thanks for your messages. Good that your sons MRI was normal - although I don't know if normal results mean a better long term outcome? My sons one showed something that would have been there since birth but has only now been revealed.

[Cerida in reply to Fern70]

Message me when ever you want ok… I find it very helpful too.