Epilepsy

[GlitteryUnicornSparkles]

I’m not sure if I’m posting in the correct place but I could really do with some support from others possibly going through similar and can offer some guidance and helpful advice or a hand hold because I’m barely holding it together.

My son is 16 (17 in a few weeks).

At the start of December he had his first seizure in the morning whilst in the shower, despite the awful gut wrenching panic I felt I told myself I knew what to do and could get through it (I work at a centre for people with epilepsy so I’ve witnessed quite a few seizures and receive annual training on it and life support) but when his lips began to turn blue and I realised I couldn’t move him (he was in an awkward position) and if he stopped breathing I wouldn't be able to do CPR I called for an ambulance. I had never been so scared in my life and thought it would never be possible to be even more scared.

Around 2 weeks later he had another seizure, again in the shower, only this time he had gone over the side of the bath, taken the shower curtain with him, hit his head on the radiator and was lodged behind the door (tiny bathroom) so I couldn’t get in to him, again lips started to go blue, ambulance called, they also sent fire brigade as they thought the door may need to come off to get to him.

In mid Jan (about 6 weeks later) he had his neurology appointment, no further seizures at that point but he was diagnosed with epilepsy and started on Keppra 250mg twice a day due to be doubled after 2 weeks. Around a 5-6 days into the meds he became very tired and lethargic, sleeping a lot, not really eating saying he's not hungry or he’s too tired to eat when normally he's like a walking dustbin. He had another seizure shortly after waking up in the night, we managed to ride it out. After that he continued to sleep a lot, not eat much and had to I had to tell his work (part time job of 1 hour a couple of nights a week) that he needed time off as he feels lousy, he kept saying he felt weak which I wasn’t sure if that was down to not eating much. I put the rest down to the meds and frantically tried to reach his neurologist as I was worried upping the dose would leave him comatose. The Dr agreed it sounded like he wasn’t tolerating the meds so stopped the Keppra and changed him to 25mg of Lamotrigine once a day, to be increased every 2 weeks by 25mg until we reach 150mg a day.

At this point we had kind of concluded that his seizures seemed to be linked to waking up ways occurring within 5-15 minutes of waking up.

On Saturday morning I heard him get up and go to the loo and then get back in bed. I was lay there for probably 30-60 minutes contemplating needing to get up and pee but not wanting to because I was cozy and didn’t want to wake the dog up when I heard him seizing, I ran into his room and he was mostly still in bed but kicking the wall, again we rode it out. Once he started to come to properly and he was able to start chatting a little bit he said that he had gone back to bed after the loo and back to sleep, he had no recollection of being awake again prior to the seizure starting which makes the timing different to previous seizures (in his sleep), then, as he always seems to do at this point, he declared he was starving now and asked if I’d get him a drink and a bowl of cereal, which I did. His room was a tip and there was a load of rubbish on his floor so as he was eating I decided to grab a rubbish bag and have a quick tidy up, as I did he suddenly began having another seizure, I grabbed and moved the bowl planning again to ride it out but I was panicking about choking because he was in the middle of eating and I didn’t know if he had food in his mouth. I managed to get him relatively onto his side and some food was coming out when all of a sudden he just went grey, he wasn’t breathing properly, I was even more scared than the first time which I didn’t think possible, well and I panicked and called an ambulance.

Much to his disgust he’s been admitted. He is fuming because “I’m fine, they’re not doing anything and I just want to go home, this is your fault, stop calling the bloody ambulance”. We’ve been waiting on a neurology review for two days.

Meanwhile I used the time he's in hospital to clean his room and discovered that despite them literally being placed in his hand with a glass of juice he has taken less than half of his prescribed anti- seizure meds!!! This now raises why he’s seemed so out of it as it couldn’t realistically have been the meds given how few he had taken. Obviously I’ve told the Drs what I have found.

I’m so angry, stressed and terrified all at the same time. I’ve been permanently on edge ever since this started, every little noise I jump up in a panic. When I’m at work I’m worried something bad will happen whilst I’m not there or that he’ll take unnessisary risks. I’m not sleeping well. I spend every bit of downtime I get crying. The fact he does not seem to take it seriously or realise the impact it and his blasé attitude is having on me does not help. There is only me & him at home so I’ve no one to lean on or help share the burden. Seriously how do people cope because I’m really struggling.

He was due to start driving lessons next month, he got a Christmas job to save up for them and thats been put an end to. He is also doing an electrical course and now hes got to have his work and his work experience modified and risk assessments in place. He had his eye on an apprenticeship with scottish power in September but theres a good chance that won’t be allowed to do that now either for safety purposes which I understand but it just feels like all the things he was looking forwards to and his potential career have just been ripped away in a heart beat and I worry where we go from here once his course ends in a few months.

I'm really sorry you are going through this but have they done a head scan as well just to make sure there isn't anything else going on.

You did right thing calling 999.
Hooefully they give him a scan and read the riot act about taking meds.

If he takes meds properly and gets seizure control he can pick up his plans later on.

And reach for support for you. Call epilepsy uk. See your gp. Call samaritans.

Couple of things:
He needs an MRI.
He needs the 2 - 3 days telemetry monitor
He needs to take the meds. Can you get it liquid and hand it him in a syringe.
You can get wearable seizure monitors / alarms that are the size of a watch

This bit is really worrying but once you get it under control it becomes your new normal.
Take a diary of food, sleep, irritability and hyperactivity as there may be a cyclical pattern with fitting.
Slightly different as my 5 year old started fitting at 10 months and it took till 4.5 until he started meds - focal partial so unless you know him you wouldn't know. But it's very scary. Sending love

I really feel for you - my DS had epilepsy for 3 or so years (11-14) until he grew out of it (no seizures for over 5 years and med free but fingers crossed). I did dread how I would deal with it if he refused meds as it is a really typical teenage behaviour - but it must be particularly hard if your DS feels that everything is being ruined.
Totally agree about the MRI now he has had more than one seizure (we were refused one after the first seizure so actually went privately), and also the telemetry and keeping a diary.
And try not to show him how panicked you are (it is hard when you are terrified - I really know) - if he feels that there is a route to getting things back under control then hopefully he will engage with the whole process.

What test have been done and what is his diagnosis? What type of seizures has he been diagnosed with? What does is the lamotregine on now? Do you feel that it is making any difference? It can take months to fully take effect. This has all happened very fast and I’m quite surprised that he’s already had his meds changed after just a few weeks. It can take weeks for side effects to subside and for any benefits to be seen. It also seems odd that he’s had two different types of meds without any actual specific diagnosis.
I will say I know exactly how you feel. My DD is 15 and was diagnosed at the age of 12 out of the blue. She has at least two types of seizures and is now on her third medication (lamotregine) thankfully this currently seems to be working.

I will also say that in the short term I find the seizures to be more traumatic for those watching than for my Dd. She has no memory of them.
She is incredibly good at taking her meds and looking after herself. He really needs to do this or there is no chance of the future he envisioned. If he does then there’s a good chance he can be stable and can then do most of the things a normal life would involve.

Thanks everyone. I’ll try answer all the questions.

His diagnosis is generalised tonic clonic seizures unless his EEG shows otherwise.

Regarding head scans he had an MRI 2 years ago when they were investigating dizzy spells plus a CT after his first seizure in December. Both were normal. Based on this the neurologist said she feels no need to repeat at this time.

He had an EEG last week still waiting on the results. He did have an EEG 2 years ago after an episode of fainting at school, it came back with abnormalities not fitting a known seizure type. In the absence of clinical seizures they said the EEG means nothing.

I’ve read him the riot act over the meds and told him that he has no hope of learning to drive or work his dream job if if he can’t get his seizures under control which he won’t without absolute consistency. The Drs however are so blase, just saying thanks for the info its good to know, we’ll add it to the notes.

Drugs were changed because he seemed so severely out of it, neuro said if he was that bad after 2 weeks it wouldn’t improve and that they clearly didn’t agree with him and were affecting quality of life. In reality it transpires he wasn’t taking them, which begs why hes seemed so tired and off his food. I don’t think liquid will make him any more likely to take over putting it down like he has with the tablets, clearly I’m going to have to physically watch him. He’s on meds for other things too so and during this period he didn’t take any of his other pills either, he hasn’t just singled out the seizure meds he took nothing. Lamotrigine is 25mg, he's only been on it 6 days and obviously it has to be increased much slower than the Keppra.

I’ve kept nearly all of my crying private, I understand it is worse for me watching than it is for him but I need him to recognise that and just how scary it is. His current attitude is that if its that awful to see then just don’t watch, leave him to it, if he dies he dies, he won’t be aware! It’s just a really unhelpful attitude. He’s annoyed at being in hospital when he feels there is nothing wrong with him.

Do not underestimate the impact of this on him and his emotional state. It has only been 10 weeks and his entire life has been upended and he’s seen the future he planned disappearing. He’s likely to be very down and very angry. He’s perhaps hoping it’ll all
just go away. The seizures themselves lives have a huge impact on them physically and can take days if not weeks to get over if they were bad ones. You are doing all the right things and will need to keep responding as you are no matter what he says. It’s very hard right know for him to see an end point but it is still very likely that this can be at least controlled and that he can do nearly everything he wants to. Even drive if he gets the medication sorted.
It’s truly the hardest thing I’ve had to deal
with as a parent. Accepting a new normal and adjusting our expectations for her a bit. He will come through it. I’d focus on getting the medical aide sorted as that will
make a big difference.

Have you asked about psychological support? He has to agree to go but maybe motivation is there underneath to move through this

Not for him, I’m not sure he’d be willing to engage. I asked him if he wanted me to arrange some counselling so he has someone to talk to if he doesn’t feel he could talk to me but he said no. His electrical teacher has epilepsy and has been seizure free for 10 years, he really likes his teacher so I think he talks to him about it a bit but I might give pastoral services a call.

Its been a really rough year and then this (plus more on top), so my (now ex) manager referred me to counselling through work. I’ve only had 3 sessions and I can’t say it’s helping much thus far.

I’ve had a telephone call off his neurologist this morning as I e-mailed her yesterday out of frustration that the hospital don’t really seem to be doing anything. Apparently our hospital is shit (like we didn’t know that already)! Apparently they should have called the emergency on-call neurologist when he was admitted on Saturday. They didn’t refer him to neurology until Sunday using a non-urgent communication tool that is only for general queries and only accessed Mon-Fri 9-5 and using it in urgent situations like this is a misuse. She said given multiple seizures and his colour I did the right thing calling the ambulance and if we come in again to tell them we need them to call the emergency on-call neurologist. She said her colleague replied yesterday at 5pm telling them he could go home on clobozam but at 6pm we were told there was still no response so I went home, at 7pm I had to come back with meds because their pharmacist couldn’t get what he needed! 🤦‍♀️. Apparently his neurologist does do ward rounds at our hospital on Tuesdays between 2pm & 3pm but is hoping she can get them to let him out before she gets here! They started him on Phosphate tablets yesterday in response to bloods on Sat morning showing his levels were low (slow response), she said its infuriating when they do this, low phosphate is rarely the cause of seizures but is a sure fire way of knowing a seizure occurred and they always get it wrong, he doesn’t need phosphate tablets. He’s going home (hopefully in the next couple of hours) on 7 days of clobozam to bridge the gap whilst we wait to up the Lamotrigine, she is also going to get his GP to prescribe some as PRN should he have 3 consecutive seizures. So fingers crossed we’ll be able to leave soon.

It is likely to take a while to sort things out. After discussion with her neurologist, my sister chooses to increase her risk of seizures (very approx every 3-6 months) by not taking a second medication - she found that she felt so knocked off that she was unable to work and dropped out of a masters.

She was diagnosed in adulthood and it took nearly a year to feel like herself after starting medication - your son may find it reassuring that he is unlikely to feel like this on medication for ever and his body needs to get used to it.

Epilipsy Action have a lot of helpful resources, but your son is unlikely to want to access any of them until he accepts the diagnosis himself. Does your hospital offer any sessions with a psychologist?

It’s so so awful for teens, my son started having seizures at 14.
The drugs do make them feel awful for a while but it gets better. My son is fine now in max dose of 3 drugs. Clobazam totally knocked him out to begin with.
If he’s not taking it seriously, show him SUDEP information.
Please think about seizure safety, a sleep safe pillow and alert device especially for nocturnal- we use epimonitor but others use an app on Apple Watch.
Young Epilepsy has been a lifeline for my son, lots of online groups and 1:1 support workers available.
Its a tough road, sorry you find yourselves on it.

I am really sorry OP. I haven’t rtft, but what stands out to me is how hard your son is finding it to adapt to this new life. I wonder whether he has had some therapy? If not, then maybe that might help? You are holding all of it at the moment, and I imagine he is as scared as you are, even if he seems to not be taking it seriously.
take care op

I had to reply as the situation of recent epilepsy diagnosis (Nov 25) is very similar to me and my son and the understandable fear and panic your post is the same for me completely.

My son is 19, electrical apprentice and it is just me and him at home. He had a driving license and a car and now can’t drive for a year.

Two witnessed (by me) prolonged nocturnal tonic clinic seizures needing an ambulance on consecutive nights. It was awful - I thought I would never sleep again. At A&E they tried to fob us off with a referral to first fit clinic with a 4 month wait. I became the polite but firm tiger mum and the on call neurologist visited who was amazing and diagnosed epilepsy and straight on meds. He was given 30 days of Clobazam as coverage for the slow Lamotrigine titration.

He is taking 150 mg Lamotrigine a day split in to morning and evening dose and is compliant. I do feel for you on your son not wanting to take his meds - what can you do as you can’t physically force him!

It has been the single hardest thing I have ever dealt with. He swings from understanding his diagnosis to thinking he doesn’t have it. However, he is choosing to life his life as he wishes - I have had to navigate boozy nights, a weekend away with his mates. He has booked a lads holiday in July. It is the last thing I want but I also don’t want him living a half life.

3 months down the line I am less jumpy but still wait with baited breath for him to get up in the morning - is his alive etc. 😢

i don’t have thd answer to many of your questions - but I wanted you to know I hear you and it is so hard!

Sorry, also to add my son has risk assessments around his work (building site) not working at height or on his own. He has told his colleagues about his diagnosis and they have been great many of them sharing stories of people they know with epilepsy.

Also, my son is a closed book too - outwardly fine but he is bound to be anxious inside and it is coming out as head in the sand by the sound of it. So hard for both of you x

Hi OP,

I found your message so upsetting to read, it must be so difficult for you.

I had my first tonic clonic seizure at 16 too which is why I think I empathise with the scenario so much.

I was prescribed Lamotrigine but between the ages of 16-19 I was awful with regards to my tablets..... I used to pretend to take them and then just stash them in the back of my wardrobe. I was so, so angry at having epilepsy and I just wanted to pretend it didn't exist. I hated being different from my friends. I kept my anger very well hidden, I never verbalised to people how I felt, but inside I felt like exploding.

Instead, I went on a complete self-destruct cycle...... I started bunking off college, I wouldn't do my course work, I was going out drinking, being promiscuous with too many men etc etc you get the picture. I just stopped caring about anything that really mattered. It was just my way of filling my time and keeping my brain distracted so that I didn't have to accept my new reality.

It wasn't until I was about 21-22 years old that I finally calmed down and accepted the fact that my life was different and that if I wanted to achieve the same things that my friends had (driving licences, career paths) then I needed to buck up and take my medication and take my health seriously.

I hadn't been taking my medication for years by that point so I was prescribed Lamotrigine again and my Neuro wanted me on a minimum of 300mg a day and said he wouldn't expect a dose lower than that to stop my seizures, so to expect them to keep happening until I hit that level (which they did).

To be honest, prior to that I hadn't even thought about how much worry or stress I must have been putting my parents through. All I cared about was how much it felt like my life was ruined.

I wish I had something more positive to say but from my experience, receiving the diagnosis and having to live with such an awful (and stigmatised) illness and adjust to all the ways it would change my life, and having to try and make sense of that at only 16 years old was was absolutely devastating.

If you are on FB there is an excellent support group for those who have the condition and also for those who have partners and children with the condition. There are a lot of parents on there who talk about the worries and fears they have about how best to support their children - it may be worth joining? It is called "Epilepsy Chat/Support Group UK" (the group photo is purple writing of different types of seizures).

Thank you so much for sharing your experience with me. It’s good to hear from the opposite side of the coin. I’m glad you have managed to stabilise your seizures now.

Thank you for the information about the facebook group I will take a look.

I'm so sorry youre going through this, OP.
My son was diagnosed with epilepsy two years ago and (touch wood), is currently managing okay on lamotrigine.
Get your son into a routine of taking his medication at the same time every day, my son is on his twice a day, he takes one at 11am and the other at 10pm.
That way they get into a routine and it becomes second nature to them.
But do stress to him that he MUST take his medication for it to work.
I know the fear you are feeling, it's always there still for me too.
And although you see seizures in your own line of work it's very different when it's your own child.
Even now my son is very blasé about it even though I've explained to him how terrifying his seizures are to witness.
Hopefully it won't be too long before they get your son's seizures under control.
There are plenty of videos on YouTube of seizures, maybe show him to make him realise just how scary they are.
A long stretch, I know, but regarding his current attitude it might shock him into action so he cuts you a bit of slack.

Thank you for sharing this experience. 150mg is the dose we are currently aiming for but it seems such a long way off.

I’m glad to hear your son’s diagnosis didn’t affect his apprenticeship too much. My son wanted to work on the pylons but is not realistic now with it being work at height. I worry that he will struggle to get somewhere to take him with uncontrolled seizures vs. having to legally make reasonable adjustments for someone because they are already employed. Its just left a lot of uncertainty around the not too distant future which is scary.

Currently he’s fairly antisocial so going out and drinking is not something I need to worry too much about right now fortunately but I’m sure the time will come when I will.

Thank you for sharing. Yes witnessing it as a parent is something no amount of training can prepare you for!

I’m glad its not just me dealing with the blasé attitude issue. I’ve actually threatened to film him next time so he can see just how bad they are but in reality not only do I think I’ll be too busty panicking to do it, I worry that doing that would actually traumatise him, which I also don’t want to do.

Just wanted to give some support and say that you will get through this and establish a new normal, but it might take a while. I was diagnosed when I was 11 and, being that bit younger, it felt led by my parents and didn’t occur to me not to take meds etc. I can imagine with him being that bit older that it’s harder as he has more independence and needs to engage with and accept it. New meds, or even changing levels of ones you’ve been on for years (I’ve been on tegretol for 30+ years), can be very hard and make you very sluggish and disoriented. So even if he was only taking half the original prescription it could have been hard on him. I hope he finds the balance of what works for him.

I am sorry for you and your son. Let me share a little of my story:
my mum woke up in a pool of blood one month before I was due
after being born by emergency c-section, I had my first seizure at 3 hours old. Cerebral Palsy was diagnosed at about 1 year old
Seizure 2, was at 10 years old, followed by 4,5,6,7 before I was 13
Currently 44 - not had a seizure since a few months before my 13th birthday - never medicated
There is clearly a link between seizures and puberty and hopefully your son will grow out of them just like I did. I don't know if my story will help your son, but it's really possible this is not forever. Best wishes.

Ah, I can see that is difficult if he is wanting to work at height. There are lots of electrical careers so it may be he can still work in the area. But I completely understand your concern about the uncertainty for you at the moment.

It just came to me - I think part of why my son is so compliant with his meds is he bites his tongue during seizures. It had been happening for 8 months before the official diagnosis - he would wake up with the most awful bitten tongue on the left hand side that meant he couldn’t eat or drink properly for 10 days. (I did try and get him to a GP as I suspected seizures but he wouldn’t go - sigh!). Knowing that the meds could stop the seizures and therefore the tongue pain is a huge motivator for him. Not wishing injury on your son but could tackling it that having well controlled epilepsy via meds could mean he is less angry, low or lacking motivation or likely to injure himself?

Lamotrigine is also used as a mood stabiliser for bipolar as well - my son now says he feels less angry and low - could be the meds helping as a happy bi product or the fact he is sleeping better but I will take it . Neurologist also said it is generally better tolerated than Keppra too - but fully appreciate everyone reacts differently to meds and not one size fits all.

I do feel for you OP - that gut wrenching panic, the jumping at the slightest thing, the feeling of being on call and responsible on your own, the flashbacks to my son’s face and movements during the seizures - awful. But as time has gone on I do get some periods of calm and hope you do too eventually x

Please don't ever make him watch a video of him having a seizure unless he specifically asks to see one because speaking from experience, it absolutely traumatised me. My mother did it thinking it would scare me into being compliant with my medication but all it did was make me hate myself and my epilepsy even more. It was horrific watching myself have a seizure and knowing that's how others saw me too. I was so ashamed and it had a very long lasting negative effect on my self-worth and confidence.