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

Personally I prefer to keep mine alive as long as I can. Guess other people make different choices

I agree that the responsibility on the child is difficult. And that’s not how I would present it to DD. But since in this case the DD wants the meds, all it is for OP is having her back, cheering her on and modelling good boundaries and assertiveness.

It’s a good example of how to make a good decision and assert your right to make it.

I can’t imagine why a parent would go against medical advice. I have zero experience with epilepsy, but I do know Doctors don’t just prescribe serious drugs on a whim.

I’m going to sit on my hands and not reply with my own version of hyperbole and appeal to emotion.

For a whole host of reasons. Some warranted and others less so.

Have you never been in a position where a doctor has prescribed something, but you as the patient are concerned about the side effects versus the benefits? I had an occassion where I’d discussed a suitable medication with a PA who was then overruled by GP (without any further discussion with me). I refused the medication (which is one used for epilepsy) due to potential side effects, so went against medical advice. When I was seen by the neurologist, he advised against the meds that the GP had prescribed as they were not suitable for my condition or general health. So I was right to go against medical advice as it had been inappropriate in my circumstances.

In this case, the father has had some seizures which have not caused any long term issues without taking medication. So in his experience, seizures can be managed without medication and may not be ongoing. He is probably also hoping that his DD won’t have any more seizures. Finding the right medication can be challenging and there can be so many significant side effects. So that will skew his beliefs for his DD even though a second opinion has been taken. I don’t necessarily agree with him, but I can see where his lived experience is playing into his decision making and going against the advice of the consultants.

They have suggested lamotrogine or keppra, sodium valproate was not mentioned.

wow same age. but we’ve had 2 now so really we need to act. the neuro was due to speak to my ex yesterday - i can tell he’s still resistant as today he asked DD if anyone had yet “pressured” her to go on medication ! the neuro will call me monday morning to update me on that call - she’s being really understanding on how it’s better to get the whole family behind treatment. But if that’s not possible i will go with the DD’s choice route …

Valproate is no longer prescribed for people of childbearing age (due to toxic effects on the foetus) apart from in really exceptional circumstances so it won’t be offered.

My Dd is the same age. Diagnosed 2 years ago after a seizure out of the blue.
She had 1 more before diagnoses. Months apart. It’s was the months again before she had another that pushed us to make the choice to try medication.
Two years later - she is on three different types of medication. First two - Keppra and clobazam have basically failed. We are now on lamotregine. This does actually seem to be finally making a difference.
She has been having at least 1 tonic clonic seizure a month alongside focal seizures and probably absence seizure also.
She has had no discernible side effects apart from tiredness.
You and your partner MUST let her choose.
Neither one of you can understand how this changes her life. It potentially affects her future in multiple ways.
What precisely was her diagnosis?
Also, honestly, the fact that you haven’t had to watch this happen yet is perhaps making it hard for you to understand how awful this is. Every single one of my child’s seizures is etched into my memory.

@Allthings thanks for mansplaining all that, I am a bit thick, luckily you were here to state the bleeding obvious

If its medically recommended, she wants to take it and is Gillick competent then there is nothing he can do

I took your comment at face value and assumed you genuinely did not know. You already stated you had no experience of epilepsy. So not a far reach to think you genuinely did not know why someone would go against medical advice. I am sorry I wasted my time and effort and sharing my experience of medics getting things wrong, which was completely wasted on someone being sarcastic. I had incorrectly assumed that on a thread like this, that posters would be serious, but lesson learnt.

The biggest reason for death from epilepsy is not taking medication.

Yes, there are side effects of meds, but you can't manage her lifestyle to the point she won't have a seizure. She could get a virus, she could be vulnerable before her period....My daughter and I got stuck for hours on a train once. Anxiety was one of her triggers, she got very upset and had a seizure. I couldn't stop it and you won't be able to either.

My daughter started having seizures when she was 14 so I do sympathise. But the meds could stop the seizures. It can take ages to find the right medication and dose. But if she can have a seizure if tired, how can you let her go on school trips etc? The meds will give her the best chance of a more normal life.

In practical terms:

Get her an epilepsy pillow

Get in touch with Young Epilepsy

Keep a seizure diary

Don't let her bathe, shower or swim without someone being right there (my daughter always had seizures in the early evening - suddenly she had one in the bath at 8am).

If her epilepsy starts to hugely impact her life, you can look at things like an Access card to get a free carer pass to shows, theme parks etc. She might even qualify for dla.

Good luck

I thought you needed to have two seizures to be diagnosed. Did I get that wrong?

My daughter is 27 and is on sodium valproate but they will only give it to her if she is taking reliable contraception and fills in a form every year tocsay she understands the risks to an unborn baby - in fact the GP, the epilepsy nurse, the consultant and the pharmacy all get her to sign every year. And it has to be signed off by two consultants. She was put on it aged 18 when she moved into adult services. Up until then they tried lamotrigine and keppra, but this wasn't working. She still takes lamotrigine too but no keppra.

If you've been medicated and seizure free for 2 years your risk of a seizure is the same as the general population. Do you worry you'll seize?

Three people die due to epilepsy every day - most people never mind teenagers have no idea

Does EXH drive with his unmedicated epilepsy? If so report him to the DVLA. At 14 it's up to your DD whether she takes medication and he will have to lump it. Don't even tell him if necessary.

I hope Ex doesnt drive

Ex doesn’t have a car so no he doesn’t drive.

Does he have a license? Are dvla aware?

I know someone too. It was years ago and I don't think she'd been taking her medication properly?

I have epilepsy OP. For me there were the most scary thing that ever happened to me, and I also have MS and Strokes!
You need to ask your daughter what she wants to do, and talk to her if she doesn't want to take them.

Im on Lamotrgine and haven't had any problems or side effects.

I didn’t say it was; but as you know 70% of people with epilepsy do get control with drugs.

Drug resistant epilepsy is a whole different ball game. DD has Lennox Gastaut syndrome, but hopefully OP is not talking about that.

Sodium valproate and clobazam are the most effective drugs for DD, which her consultant says is because she has Lennox Gastaut syndrome. They don’t have noticeable side effects for DD - lamotrigine, ethosuximide, Keppra or zonisamide were far worse. She has absolutely no chance of getting pregnant.

Does your ex drive? Sounds like he shouldn’t be.