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

What does DD think? At 14 she is old enough to manage her own medication and have a say. She might have found the seizures scary, for example.

At 14 is she allowed to have a say in her own treatment?

It seems crazy to me that he would object. Is he a conspiracy type who is suspicious of "big pharma"?

Don’t ‘push’, he shouldn’t ‘resist’. Give your 14yo all the medical, neutral information and see what conclusion she comes to.

My DD is capable of deciding for herself. And she’s also capable of managing her own meds. (Not epilepsy.)

I cannot think of a single reason why you wouldn't take epilepsy treatment if you've been diagnosed with epilepsy. I would absolutely insist she takes it (as long as DD is happy).

Yanbu, you should get her the medication. But what are his objections? I know nothing about epilepsy, are the drugs likely to cause serious side effects?

Well, if she ever wants to learn to drive she will need to control her seizures (usually through medication). Whilst on that subject, does your ex drive? If so, I do hope he has informed the DVLA of them as it needs to be recorded and you need to be seizure free for a year before getting your license returned.

Speak to your daughter about what she wants and explain about the options, then speak to your ex.

I have siblings with epilepsy. diagnosed when teenagers. The start was linked to puberty.

Both on medication.
Sounds very irresponsible to not have medication.

His experience of epilepsy is unlikely to be identical to hers, not least because she’s female…. Agree she should have some agency in her own care, which should recognise that as she moves into work/uni, her needs will evolve (and medication may adjust too). What course of treatment leads to her being safely / reliably independent?

What does your DD say to all this? Did the Consultants explain everything to her thoroughly? Epilepsy Action have some very helpful resources on their website and a helpline.

My concerns about not following medical advice would be:

Seizures suddenly become a regular occurrence with risk of serious injury and distress, ie when she is alone at home, when swimming, on public transport, at night when everyone is asleep.

Side effects of uncontrolled epilepsy on her long term health and education.

She won't be able to learn to drive with uncontrolled seizures.

The risk of pregnancy and uncontrolled seizures.

With the greatest respect, your ex sounds extremely irresponsible to think he knows better than a Consultant Neurologist.

She should have the final say and be able to manage it herself now

14 year old DD’s opinion is the most important thing here unless she’s not Gillick competent.

They can sometimes cause serious side effects

(I used to take an epilepsy medication for migraine and it's left me with problems)

DD wants to go on medication. Thanks all - I do know I need to ensure this happens, I guess I am gearing up for the inevitable showdown. He is very difficult to discuss things with, and I sense he is digging in .

He thinks he can prevent a teenager and young adult getting ever getting tired?!

If she’s happy to follow medical advice and start medication then I’d be strongly supporting her doing that.

His objections are 1. side effects 2. he thinks we can manage it by not letting her get over-tired. As he has effectively lived with this and it’s not really affected his life at all, we could do the same with DD. Thanks @AbzMozfor your points around that

The fact that he is objecting to something his daughter wants to do with her autonomy I suspect speaks of larger issues

bwxause the only important thing at 14 is what she wants to do

Get her the medication. No details, but this has had a massive effect on my life and those close to me. Don't question it or let anyone try to 'manage' it. Just get her the medication. 👍

I knew someone who died after having an epileptic seizure in their sleep. If your daughter wants the medication then she should have it. It’s her body.

But its not just a one size fits all situation. People have different types that need different medications.
What worked for him probably won't for her.
How will he stop her having a fit and falling and smashing her head or worse? This happened to my brother when he stopped medication for a few weeks as he decided he hadn't had a fit for ages so obviously didnt need it anymore.
Her health is much more important then his very limited experiences

Exactly. It’s not his decision if she is competent and wants to do it.

And that’s how I’d approach it; that DD has the information, decided to try and will be managing it herself. No argument needed.

This is bonkers, epilepsy (I have it) can be truly dangerous should a seizure happen. You never know if it’s going to end up in an accident or status epilepticus and seizures can happen even if you’re not tired! And she can’t stop herself being tired 100% of the time in the future. What if she has a fit when she’s due to sleep?

I had mini seizures too and never told my parents because I didn’t know how to describe them

your ex sounds like he needs medication for his seizures himself.

please, please put this poor girl on medication so she can live a normal life🩷

Id take my daughter to a GP private appointment and then do what she wants after discussing with the Dr what you can do to help her. I'd tell him to keep his opinions to himself he's not her Dr.

And what happens if her epilepsy presents differently than his? She's so far had 2 seizures. At this stage you don't know if it's only down to tiredness. It's very early days.

What he does with his body is his choice your daughter can do the same, especially at her age. If he interferes in anyway I would take it further. 2 specialists have recommended it. Your daughter wants to. He'll end up in a heap of shit if he goes against all of that just because "he managed without" being his argument.

Epilepsy is very serious. A friend lost her daughter to a seizure. All seizures before then had been classed as febrile. Until they weren't.

It might reassure him to know that the current generation of meds have fewer damaging side effects than before. I wonder if he and a poster above with migraines are thinking of something like gabapentin, which was harsher and would not be a first line of treatment now.

Please let her take the medication if she wants it. If she can get it under control with medication it'll make a big difference as she grows up - being able to learn to drive etc.