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

I'm another who knows someone who died following a seizure in their sleep. She was the beautiful 27 year old daughter of an old school friend. She started having them in her teens and it had been well managed to that point.

My young sil died from a seizure after no medication. Stress and being tired does trigger them but you absolutely cannot manage this for someone else. Especially as she gets older she might push it

Completely agree and understand every comment about SUDEP etc. My daughter has had epilepsy for nearly 4 years. All I would say is please do your research about the side effects of the drugs you are offered as some are so awful you would never believe it until you have seen it.

I've been on epilepsy medication for over 20 years. Have my driving license and a DC. Seizures are so frightening and dangerous. I would do anything to not have that risk again.

Do you not feel like driving with epilepsy is irresponsible even if you’ve been seizure free for however long

Unfotunately, epilepsy like asthma is really underestimated and as others have said may cause death, especially if it is not pro-actively managed. You DD is of an age to decide what she would like to do under Gillick Competence, so this should be her decision backed up by her parents, even if that is only you. If she is on medication, she will need to remember to be responsible and to take it at the right time... although do not be surprised if in late teens or early 20s she rebels against it, as this is quite common. For me, and because of those I have known with it, it would be straight onto the medicine.

Why would it be? She could have not had one for 10 years. Anyone can have a seizure at any time

I've been seizure free for over 20 years so statistically my risk of having a seizure is the same as the general population now. That's the real positive of being on medication. You can live a very normal life.

Think about all those people who drive after 3 drinks, 4 drinks, on drugs, who exceed the speed limits, use their mobile phones, and drive recklessly on a regular basis. Now that's irresponsible.

Yes, but there are quite a few drugs, and if the side effects of one are too much, the neurologist can always try another one. Also, just because the information leaflet lists side effects, it doesn’t mean DD will get them, or that they will be unbearable?

It’s like all drugs - do the benefits outweigh the risks?

The brain goes through a lot of changes in the teens and early adulthood. If the epilepsy changes as a result, other triggers may emerge, besides tiredness. The ups and downs of hormones in DD’s menstrual cycle could cause seizures as time goes on - which DH won’t have experience of.

But someone who is diagnosed with epilepsy knows there is a higher chance.

Your EX should not be advising his daughter to go against the opinion of medical professionals and you certainly should ignore him of this. Just a point though - for me first seizure 6 hours after my mum suffered placenta previa, seizures 2,3,4,5 between the ages of 10-12. Now 43 and and have none since, and was never on meds. I am not saying at all your daughter should be on meds, but it is possible that this is something she will grow out of without them.

If it's what your dd would prefer as well then yes do push for it. Also, did you know you can buy seizure alarms for beds, they have pads which go under the matress and then you can have an alarm in your room to alert you to a seizure at night.

Thanks all - the comments about DD’s autonomy and approaching it that DD has the info, has decided to try it and will be managing it herself are super helpful. I think this is the way to go. I’ve been worrying too much about her feeling in the middle of us two but of course she should be central in all this.

@BlueandWhitePorcelain yes I know, my daughter has been on 16 different epilepsy drugs. All her hair fell out taking sodium valproate, she ran out in front of a moving car taking clobozam. We have been weaning clonazepam for 16 months as it’s such a violent drug she cannot tolerate more than a 0.1mg reduction each week. It has only just been recognised that teenage girls should not take sodium valproate however parents have been saying this for years. I’m urging the poster to do their research and speak to parents of children of a similar age - not to say no to epilepsy meds.

Keppra is a first line drug but there is a new drug from the same family that does not come with the ‘rage’ many people who take it feel. I wish it was as simple as trying a new drug of the first one doesn’t work.

I was on sodium valproate as a teenager and it completely messed me up including stopping my periods. I would only recommend that if nothing else has worked. OP, lamotrigine is also an option.

I know three people who have died due to seizures. One only a few days ago, tragically. I have Epilepsy, am on a fuck load of medication, and it's still very poorly controlled. My Epilepsy Nurse had a serious go at me the last time I saw her (and was correct to do so), saying "you do know people die due to seizures? Do you want to be one of them?"

My Neurologist is very vigilant, he sees me very regularly, I have EEGs and brain MRIs several times per year.

"Anyone can have a seizure at any time". Very true, @fireplaceember. Anyone who has seizures has had a first seizure at some point. But those of us with Epilepsy are clearly far more likely to have seizures.

I do agree that some AEDs can be horrendous. I've had some really awful side effects, to the point that one particular drug made me barely able to function, mentally foggy, and suicidal. My current medication is thankfully working very well, and the side effects are minimal. So I understand the worry about taking AEDs, but it can just be a case of finding the right one.

OP, I'll be happy to discuss my experiences with you, and what meds finally worked for me, if you want to PM me, as I'm not comfortable sharing that on an open thread. And of course, what worked for me might not work for your daughter. But I just want you to know that there's support and understanding here for you.

Your nurse sounds like an arse, unless you were refusing to take your meds

Not necessarily
who’s a higher risk, someone on meds that hasn’t had one for 20 years or someone who is in denial they’re an alcoholic and in withdrawal or someone that had a seizure in their sleep and didn’t know they had one

I had seizures as a child, not on medication. My risk is probably similar to anyone else

This ⬆️
Absolutely she should be on medication.

My older son has epilepsy - diagnosed after two tonic-clonic seizures - so I read a lot about it when he was prescribed medication. Because having uncontrolled seizures are so dangerous, I concluded that medication was the best option. Seizures can cause injuries or even death. A friend of mine ended up breaking her spine after having four seizures within a short space of time (thankfully, she recovered, but had a long painful period of recovery).

Your ex has just been lucky that his seizures haven't harmed him. The thing is, you don't know when a seizure will happen - you could be having a bath, swimming, driving a car or walking down the stairs. My son had both his seizures in the bathroom and was lucky he didn't hit his head on the sink either time.

My son didn't want to have to live his life not knowing when he might have another seizure. I imagine your daughter will be worried about that too. The right meds will take that worry away.

My Neurologist won't let me take Sodium Valproate as I'm technically still of childbearing age, and it's a teratogen. Keppra almost sent me off the deep end, rage is a good way to describe how I felt on it, I was not even remotely myself. Pregabalin and Topiramate were similarly awful. Pregabilin I was borderline psychotic, Topiramate I was under a fog and slept for about 18 hours a day.. Currently on Brivaracetam which has kept me seizure free for a few months. It's so hard finding the right medication.

She was pretty harsh alright. I cried the whole way home in the car, I absolutely took my meds as I was supposed to, my Epilepsy just seems to be hard to control. She also berated me for participating in a charity event that involved heights, before I knew I had Epilepsy (it was actually when I had my first seizure). I suppose over the years she's had to deal with patients not being compliant with their meds, which must be frustrating. So I try to understand that that probably influenced her treatment of me. Oh feck, now I'm getting all emotional, because it was extremely stressful and difficult. Thankfully I now am under the care of a wonderful Neurologist, which has made my life exponentially better.

I’m so sorry she treated you that way. An epilepsy nurse should be factual, but supportive. You should ask the hospital/your GP/ your neurologist for a referral to another one. I’d honestly be making a complaint.

Sounds pretty much identical to our experience with DD. We chose medication after talking to her consultant and she’s been (touch wood) seizure free since her first and only one. She passed her driving test this year too and although it’s a slight inconvenience for her ordering tablets she’s safe and we’re happy. Seizure was when she was 14 btw on a sleepover

I definitely should have complained at the time. I was in a very bad place and not emotionally resilient enough to do anything, if I'm being honest. And now, I just want to leave it in the rear view mirror, it was such a horrible time.

But you're right, I should have spoken up, if not for me, then for the patients who would come along behind me, and who deserved better treatment.

I don't have to see her any longer, I'm now seeing a Neurologist who is extremely kind and compassionate, and who's support staff are really great.

I guess it's hard when we're feeling worried and vulnerable. The flip side is, I also had some amazing care, including the wonderful nurse who accompanied me in an ambulance transfer to another hospital for additional tests, he was kind and funny and held my hand for the whole hour long drive. And arranged for tea and toast with loads of marmalade to be brought to me once I came to from the sedation 😂