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

Great news.

This is the weird time where they are starting to become adults and our job changes. It’s an adjustment to go from hands-on parent to advocate, cheerleader, advisor and sometimes the things they push against.

It’s easier in that defending your DD’s rights is a noble endeavour while making decisions for her is more fraught with responsibility.

I think your daughter is doing the right thing. Good luck to her🩷

I feel for you op there is nothing more frustrating than a parent that says 'well this worked for me so it will for you' we are all individual and our medical/emotional/learning needs are unique.

This is very much up to your dd

Read about SUDEP! Can’t believe anyone would take the chance. It really isn’t a teenagers decision to make. Epilepsy really can result in death.

My dad had epilepsy and drove. There are tight rules regarding how long you have to be seizure free before you can drive. My dad didn’t have a seizure in the last 40 plus years of his life and was driving for 35 of those.

My dd has had seizures, including clusters around puberty and we were offered meds but also the literature to show the positives and negatives - we opted not to put her on meds because the side effects are bad, you have to weigh up these things. The seizures settled by 16 and whilst she cannot drive and carries id with her explaining she has partial complex seizures and contact information for nok it is now very rare to get one, and yes typically linked tiredness and jet lag

This.

The doctors presumably presented DD with the facts of her condition, so she likely has an opinion.

If DD is in favour but exH persists in his obduracy, I'd be prepared to lawyer up. He's being a complete fool.

I would also ask your exH to respect her decision and not try talking her out of it.

Jeez this is awful. You allowed your DC to have regular fits and didn’t choose to medicate her? And she’s still having fits?

poor girl. Seizures are brutal, I’m guessing she probably won’t go on them as an adult as you’ve encouraged her not to as a child.

i don’t understand some parents on here 😭

Jeez this is awful. You allowed your DC to have regular fits and didn’t choose to medicate her? And she’s still having fits?

poor girl. Seizures are brutal, I’m guessing she probably won’t go on them as an adult as you’ve encouraged her not to as a child.

i don’t understand some parents on here 😭

Yep, this and how dangerous status epilepticus can be, huge potential to cause brain damage.

Of course she needs medication. Uncontrolled epilepsy is dangerous. I'm on lamotrigine. You start at a low dose and gradually increase, to prevent side effects. One side effect is it can affect short term memory, but I am fine. Studies have actually found that it improves cognitive function and protects against dementia in later life.

Important warning: If for any reason your DD wants to stop taking it, she mustn't stop it suddenly. It needs to be very gradually reduced under doctor's supervision. I think it's a great medication, but this is one of its negatives. The side effects from stopping it or even just reducing it too quickly can be bad, including anxiety. Best wishes to you and DD, and sorry about the problem with your ex, I don't have any advice about that except maybe to reiterate that this is doctor recommended advice, you should go with it to keep your daughter safe.

Please don't let your ex stop your daughter taking medication. Epilepsy is very serious - I know a family who lost 2 children through seizures. If a medical professional is recommending medication, she should take it. At 14, your daughter is old enough to be responsible for her own meds when she's with her father.

It really IS a teenager’s choice to make. 14 is an age when they start to have to make really important decisions about their bodies. Sex, drugs, alcohol, modifications, medications, all sorts. Supporting their right to information, education, advocacy and bodily autonomy is key. You can’t (and shouldn’t want to) hold down a 14 yo and force them to take meds, so making them the centre of the conversation is crucial.

This is all part of the same old parenting issue. We aren’t just controlling children. We are raising effective adults. Short term thinking in parenting is stopping this.

Hmmm. Their brains are really developed enough to decide about not taking drugs and possibly dying as a consequence???? You let them drink to excess if they want to, smoke, go in cars without seatbelts? You wouldn’t insist medicate for T1 diabetes if they didn’t want to, or a heart condition. Epilepsy kills people, teens included.

Teenagers often don’t realise the implications of uncontrolled epilepsy.

Dd gets the medication and just keeps it in her bag when she is at dad's.
He doesn't need to know she even has it because he's clearly an idiot.

I think I am massively biased but I think it is irresponsible not to medicate your DD. A family member had undiagnosed epilepsy as a child. He was having small seizures that he never told anyone about because he didn’t really know what they were. Just stumbles, or falling back into bed some mornings. Fast forward to uni (when people don’t always prioritise sleep or wellbeing) and he had a massive seizure - very very luckily, his roommate was studying and realised what was happening. He went to hospital and has been on medication since. So no terrible ending but it could’ve ended a different way had he not been with someone.

Your ex is crazy to think you can manage epilepsy through lifestyle choices alone - it’s such an unknown quantity. Partly because good sleep doesn’t totally reduce the risk and partly because your daughter won’t always be in a place where she realises the importance of being ‘sensible’. She’ll stay up late to study or hang out with friends and she’ll be vulnerable. Plus, why let her live in fear of having a seizure - apparently they feel horrendous and I’d hate for my child to have one at school. As someone who (‘just’) fainted at school several times, kids are not kind about wetting yourself or throwing up in your hair between lessons.

I’m not sure why people think it’s up to a 14 year old to decide something so serious either - it’s literally lifesaving medication not a ‘nice to have’ set of pills. I don’t say this to scare the OP as I’m sure you are fully aware of the risks but it’s important people realise that without warning, she could have a fatal seizure. Not just because she might stop breathing but because it could happen anywhere which could mean falling down stairs, off a train platform, into a busy road.

Get those meds asap!

Sounds like the three of you together need to see the private neuro again, and discuss options. With the patient at the centre of the conversation and parents there in listening and support mode.

‘Let them’ is doing some heavy lifting. The whole point of involving them, coaching them, putting them at the centre of the decisions is so you don't have to ‘tell them’ or ‘let them’. At 14, if you have relied on forcing them to do things and stopping them doing other things you’ve run out of options. I watch the ‘serious consequences’ parents with their children who lie and make terrible choices now they’re teenagers.

It’s nuanced. I do a lot of ‘if it were me’ and ‘as your mum, what should I say’ and other ways of fitting these things inside their heads. DD currently makes good choices. She doesn’t want to smoke or drink or vape or not wear a seatbelt. How much of that is because I empowered her (and have since she was small) to decide sensibly, and how much is luck, who knows? I certainly don’t. And it’s a marathon so we don’t know for decades.

I’ll give you a tiny example with clothes. When she was little, she hated wearing coats, gloves etc. DH was a ‘you’ll wear a coat because I say so’ parent but my solution was, ‘OK go and stand outside for five minutes wearing what you’re wearing and see if you think you need a coat’. 90% of the time, she’d decide she needed a coat. 10% she wouldn’t. I’d say, ‘OK but I don’t want to hear about it if you get cold’ and I wouldn’t. Which means that when we were in a place where she HAD to wear a coat (sub-zero) and I said, ‘you have to’, she’d know it was serious and she wouldn’t argue. I reserve telling for very very few occasions. But DD knows if I do, I really mean it. It’s normally life-threatening times. By 14, it almost never happens because she’s already making good choices herself.

Parents who force sometimes have no skills with teenagers. And end up on here threatening to chuck them out or put them in care or whatever. Because they relied on forcing little children and now those children are big and use force themselves. Or just lie.

Seeing a child/teen having a tonic clonic seizure is genuinely horrific, and unless you video it, they will have no clue what happened. My son wakes up headachy and sore but remembers absolutely nothing. He was so upset when he first saw a video. (Parents are asked to video if possible to show to the neurologists/nurses).

Ok but not taking life saving medication is vastly different from choosing clothes. Like it or not, they need to take it. As consultants tell teenagers every time they see them.

At 14, if Gillick competent, a child can consent to treatment. They are not necessarily able to decline life saving treatment or treatment to prevent serious ill health.

Your daughter wants treatment for a potentially life threatening condition. Your ex can not prevent that and if they really wanted to try and go through the courts to prevent it no court would allow him to do so.

Epilepsy is a condition that has varied effects on people but there is ALWAYS the risk of a very serious seizure and sadly the risk of sudden death. These risks are significantly increased if the epilepsy is not treated.

Get your daughter started on medication ASAP and if ex becomes obstructive I would prevent her from staying overnight and consider reporting this as a safeguarding risk.

Clothes were an example. As they get older they are making more and more serious decisions. The clothes are priming them for later on.

14 year olds are making life-changing decisions all the time! Sex, drugs, smoking, drinking, peer-pressure. Medication is just one of them. Even if you tell them they have to, they are taking it themselves and can opt out if they decide to. By all means try to force and control them, rather than trusting and empowering them. It’s a very short time until you will have no say at all.

I’m totally with you with this style of parenting but I think there are some areas when the responsibility shouldn’t be on the child, partly because her parents aren’t in agreement (so she may feel like she’s picking sides - not a good foundation when making a big decision) and partly because she is still quite young to have all of the information /understand how this diagnosis will impact her life. I think a 14 year would find it quite scary to hear the reasons why the medication is a good idea and could potentially cause her anxiety. You might argue that she doesn’t need to know the full ‘threat’ a seizure poses but then she cannot make an informed decision with all the facts. I think when it comes to some medical choices, parents need to act like the responsible adult and make the best choice on their child’s behalf. I’d wait until she was older to give her the choice to come off them and then you can be more open about the consequences.