AIBU to push for DD to get medications for epilepsy despite ex being against it

[SpringCalling]

Ex and I split up when DD was 5. She’s 14 now. Co parenting generally ok nowadays - nearly 50/50. But DD has been diagnosed with epilepsy after 2 seizures, both on school trips whilst very tired. So neither of us have yet seen a seizure. Saw private paed neuro, had mRI and EEG, he diagnosed epilepsy and advised go on medication. Ex is not keen - he has never been diagnosed but has had seizures in his life - only on waking, never another time. He thinks we can manage DD by not letting her get over/tired. That it has hardly affected his life so does not need to affect hers. I got a second appt through the NHS to get a second opinion. Again, diagnosed epilepsy and advised medication. He is still resistant. AIBU to push for DD to start medication despite his opposition - even if that means she spends more time with me? Because I know he is capable of sabotaging this, losing the medications etc …. My main concerns are SUDEP (she may stop breathing if has a seizure at night - highly unlikely but a risk) and that she is likely having mini seizures / lapses without us even knowing, affecting schooling, tiredness etc

Honestly I think there is a lot of misinformation on here. Ultimately she is gillick competent and it is her choice.
My child has epilepsy - consultant has so far advised against meds as there is no regression and the side effects can be nasty. Also tiredness related. Also small seizures we didn't know about until telemetry. What has helped massively is melatonin at night. Therefore reducing the tiredness. Also child is younger and therefore more likely to resolve.

Meds will give her the best chance at freedom in her life. I'm epileptic and it's rotten to be honest. I have a fantastic neurologist who talks everything through with me and takes my opinion into account when changing anything. I'm under 40 so still childbearing age but sodium valproate is the best drug for my specific type of epilepsy. Meds and side effects are so personal and also changeable. There are so many combinations and dosages that can be tried and she can change whenever it's needed. I'm desperate to be seizure free and I'm hoping meds will get me there.

Also to say it ends up effecting every tiny aspect of your life as you are worried about a seizure and meds give you a great feeling of trying to do your best to have some control over what is essentially a shit situation.

Id want dc to have the ability to drive so would want to start medication.
Does her dad not realise how embarrassing it is for a teen to have a seizure infeont of peers?

As an epileptic myself, I’m going to give you the benefit of my experience.

Like your daughter, I have my seizures in the morning, and they didn’t go away on their own.
I just had more and more.
It sounds like he’s in denial about her condition, which i can empathise with.
But, you need to get ahead of the seizures and not let her have any more. And medication may well be the answer to that problem.

With the best will in the world, there’s always times where you’re groggy and a wee bit half asleep. You can never completely control that.
Even if you wake up from a cat nap, you’re not quite ‘with it’ for a few minutes.

Been on my meds for epilepsy for over 30 years now. I take phenytoin and have no problems and luckily seizure free when I started taking it.
I agree seizures are horrific. The auras and afterwards, and the pain for days after if you’ve bitten your tongue is so bad.

I can’t understand anyone not medicating to prevent them especially when untreated epilepsy can kill.

I wish you all the very best, @SpringCalling this is a tough situation for all my you.

Lamotrigine worked wonders for me

My 13 (nearly 14) year old son was diagnosed in December 2024. In no universe can I imagine NOT giving him medication for it. TBH neither myself or my exh even thought about asking him whether he wanted medication or not. It was a matter of, you’ll need to take medication, we’re not sure how long for. If it’s for life it’s for life.. I’m devastated by the diagnosis, it was totally unexpected. I can barely function on some days… everything has changed 💔

Lamotrogine has kept my daughter seizure free, she has the waking epilepsy you describe. No side effects, she’s learning to drive & it enables her to live her life as she would wish.

I witnessed her 2nd seizure. No way would I ever rely on merely trying to prevent her becoming over tired to prevent seizures.

Are your son’s seizures controlled? The diagnosis isn’t really that bad you know he can live a completely normal life if seizures are controlled with meds.

Not at the moment.. we are still on keppra and increasing currently. His seizures have always been, like 5/10mins after falling asleep… starting on left side of his face, into full TC’ lasting under 2 mins. Keppra seems to have eliminated the focal aspect. Awating sleep deprived eeg appt and a further MRI. I’m praying he may grow out of it at best.. failing which he gets good control. 🥺🥺🥺

I started having seizures and have tried every anti seizure medication perscribable. I hated how they made me feel, every single one of them. And it never got any better. So I stopped taling them and I manage my seizures by being mindful of myself.
My child gets migraines and im worried it may turn into epilepsy but I won't be rushing to medicate her. If it happens id try cbd based things first at the very least.

There’s a broad range of anti-epileptic drugs with varying side effect profiles.

The side effects of a unmanaged seizure disorder include death.

He is being grossly irresponsible as a
parent. His right to stupidity does not trump your daughter’s right to medical treatment.

Can ask what you mean by ‘manage’ and ‘being mindful’ of yourself.
What type of seizures do you have? Are they life threatening?
My DD is a teen. She eats well, sleeps well and obviously doesn’t drink or do drugs. There is no way of managing her seizures without medication. Her seizures come without warning and could kill her in the wrong circumstances.

I hate how they make me feel. So I have to ask, what's your magic solution? Just being mindful? Ah if only I'd thought of that years ago. As I'm clearly too thick to be "mindful ", I suppose I'll just have to carry on taking my medications. Oh well. If they stop me from dying, I'll be okay them.

my dd is late onset epileptic and having a nightmare getting her medical settled. I would much rather have had this diagnosed at 14-15 and had her meds settled so she was stable, then so she could live a typical adult life with driving lessons etc. it’s not your exs call in any way shape or form. It’s100% for your daughter to make an informed choice and then rely on you to support her treatment going forward.

Think she means just let the seizures happen, get to a safe place when you get an aura. Unfortunately not all of us get an aura warning when we have a fit, and end up collapsing in the street or falling off the toilet and breaking our noses 🙃

I read a study that said 400 people die avoidable deaths a year in the UK from epilepsy from falls, etc and they are usually on sub optimal medication.

This doesn’t surprise me.

Breaking my nose was when I realised ok I might need new meds. Thankfully stableish (no more tonic clonics) on my new meds for over a year now.

@simsbustinoutmimi yes fracturing my cheek bone and ribs did similar to me! I don't get any aura that I am aware of although my husband can spot when I'm not right. Meds are key for me being safe

I can spot when my DD is potentially more likely to have a seizure as her behaviour changes but that can take days to build up. Days of being withdrawn, dazed and poor memory, so no way of using it to help keep her safe.
Similarly she does sometimes get and aura but it’s seconds before hand and give no time to do anything about it. Only once has it allowed her to get to the floor before she fell.