Worried about partner being alone with our son

[Reecex]

My partner and I have been together for a year and a half, we've been friends for 9 years and 6 years ago had a very brief period of dating. My partner was diagnosed with epilepsy when he was 16 and has had 9 years to accept and deal with his condition. I, in no way whatsoever, can even begin to imagine dealing with this condition, however, he forgets to take his medicine sometimes days at a time, I've tried everything to get him to remember like setting an alarm on his phone, buying him a pill key ring so if he's out and about when his alarm goes off he has pills on him to take. I've also bought the Monday to Sunday am and pm pull boz and I've even brought him his medicine to take. He still has seizures, he almost went a year without one but unfortunately on boxing day last year he had a very serious fit and lay in the snow with his 2 front teeth knocked out and a suspected neck or back break. Thankfully he was okay and we have managed to get the NHS help on our side for his teeth (he's getting implants). We're only 24&25 but had our first baby in Feb this year. It's been a very VERY tough start (my son and I almost died) and in the last month he's had 2 seizures, one on his own and one yday. Yday was the first time I have ever witnessed it and it scared the shit out of me. My son was safe but all I'm thinking about now is leaving my partner alone with my son for extended periods of time. This may sound harsh but he doesn't get any warning before a seizure and I'm scared he gets hurt. I had only been in the house for 5 minutes before he had a fit and prior to that was alone with my son for hours as it was father's day. AIBU to think like this??

Yanbu. he's a dad. he needs to get on top of his medication routine. It's understandable that you worry about your child's safety

If he's not fit to drive he's not fit to look after a baby on his own until his condition is under proper control.

Nope, YANBU.

What does he think? Does he think there is a problem? What are his ideas for improving things?

Does he have a consultant appointment coming up, or could you make a GP appointment to go to together to talk about his management of his condition in the long-term?

We have literally just been to his neurologist, I called and left a message but haven't had a call back yet.
I have been looking into epilepsy Scotland, I'm trying to check if there is someone we can talk to about caring for a baby if you have epilepsy, I think it would be good for us all and hopefully my partner can stop feeling so guilty and embarrassed about his condition

Agree you can't leave him alone with ds until he's got his medication under control. My dd used to have grand mall, she'd fall to the floor, go unconscious and then be totally out of it for another hour. Too dangerous

If he’s epileptic he really needs to take more responsibility for his medication and I say that as someone who is also epileptic! Not taking medication he needs is just sheer irresponsible, especially when there is a baby involved. Case in point: my worst seizure involved falling on my disabled brother, thankfully my dad was in the house and quickly moved me so we were both fine but it could have ended up much worse.

What did his neurologist say? Was it all 'it's going fine, oh great, see . you in six months' or was there any discussion? Is there a neurology specialist nurse to talk to - particularly for you since you have found witnessing the fit really hard?

If he's old enough to be a father then he should be old enough to take responsibilty for his medication. YANBU. What if he drops the baby whilst having a fit? etc etc. I wouldn't be leaving the baby with him. Sad as it is he's not in a position to be able to safely take care of a baby.If anything happened you would never forgive yourself.

Does your dh have an epilepsy nurse? Or if you live in Scotland have you ever heard of Quarriers? Quarriers are a charity that provide support for people with epilepsy and their families.. My dh has epilepsy and I have been there with worrying with the babies. Luckily my dh has had medically controlled epilepsy/ been seizure free for 6/7 years now.

There are apps for remembering to take meds. Or the Quarriers nurse might be better able to advise you on supportive equipment/ ideas. Is it possible your dh is having absence seizures which could be affecting his memory? Does he realise how dangerous missing his meds can be? I ask because my dh was originally very against his diagnosis his family didn’t want him to accept it and he refused medication. Thankfully he saw sense when I pleaded with him! Is your dh depressed or struggling to accept his diagnosis?

Dh is religious with taking his meds, he carries spares in his car and in his coat pockets so that he has meds just in case he forgets to take with breakfast or is out later than he realised.

My dh took a seizure whilst holding our newborn ds, amazingly he put our son down on the floor in the hall before fitting in a different room. He doesn’t get warning but his body kicked in and put our son down safely first. We kept the pram in the house and for several weeks unless DH was lying/ sitting down with our baby, he would put ds in his pram/ playpen when he was alone. I pushed ds between rooms in the pram at home anyway as I had spd/pgp and needed the support for walking, so it wasn’t unusual for us. I also made sure to be nearby if dh was bathing ds and used a bath seat that cradled ds so if dh took a fit he wouldn’t have been holding the baby.

I don’t advise your dh pushing the pram when out though, as obviously he could take a seizure and the pram could roll away. He could safely carry your ds in his car seat whilst he is small enough.

The most important thing is making sure your dh religiously takes his meds and NEVER runs out, so you can determine if the meds are working or whether he needs new treatment.

Could you write post it notes (reminder, take meds) and stick them on the bathroom mirror, kitchen cabinets, bedroom wall etc?

Also reminder notes in the car, on the rear view mirror and steering wheel, in his wallet too.

He really isn’t safe to be in charge of a baby until he gets his epilepsy under control.
Not taking medication when he should is like Russian roulette. Every grand mal seizure is a life threatening situation.
He really needs to take responsibility for taking his meds himself

CaledonianQueen I'm really, really hoping he's not a driver!!!

OP, could he be 'forgetting' to take his meds? I mean do they make him sleepy or give him other pleasant side affects? I just can't see why they wouldn't always be uppermost in his mind, thinking the damage that he could do to himself or others if he misses them. And please don't leave him unsupervised with your son. He's a helpless baby, depending on the adults in his life to keep him safe, but you're gambling on it.

I would never leave them alone at all, not for a moment, and tbh if your partner is as much as risk as that I wouldn't leave him alone either. I lived with a friend who had seizures regularly. It isn't just the fits but the extended period of sleep he'll need afterwards too. Not conducive to looking after a baby!

YADNBU to worry about the safety of your son. Your dp should also be worried. He can get his medication under control but I would not leave the baby with him unless I was 100% confident all would be OK.

If your dp is not happy about this then he is thinking of himself and not your son.

Your dp not getting his medication under control is putting a lot of things in jeopardy.

Congratulations on your baby son, and I am sorry it was a tough time for you and him, put him first and encourage your dp to step up.

Gosh it seems really clear to me. I knew someone with lots of seizures too. There’s no way I’d leave a baby in their care, if they weren’t being regulated by medication. That’s dangerous and no conversation needed here. Your DP needs to act responsible. You can’t leave baby with him until that’s sorted.

Apologies, I am too used to dh being seizure free and having his licence back! I am trying to think of where my dh would most likely see the post it notes! It was actually dh’s idea to use post it notes for reminder!

The glove compartment and passenger mirror on the sun visor may be a good idea for notes. On the door before going outside. It would likely drive him mad but it should drive it home how bloody important the meds are! SUDEP terrifies me! I would be beside myself with worry if dh was being careless with his meds!

I also constantly carried ds and then dd in a sling (connecta) which might be an idea rather than leaving your ds with your dh. Alternatively leaving baby in a pram/ cot/ playpen would be safer than leaving your ds alone with your dh.

My understanding of epilepsy medicine is that it has to be withdrawn very, very slowly, so heaven knows how your DP's body is reacting to all this starting and stopping.

I'm currently taking epilepsy medication for a different condition. I feel for your other half as the side effects are horrible. Although most ease off or get more manageable over time at least. He absolutely has to find a way to live with his condition and the compliance needed with his meds if he wants to be a decent partner and father though.
Anyway, best of luck with this, it's a horrible situation for you both and as a new mum must be very stressful for you.

Why is he even driving? Rules on driving and epilepsy. Your dp is legally obliged to tell DVLA and they will remove his licence. Getting behind the wheel is a criminal offence.

Didn’t the neurologist talk to him about this stuff?

As for looking after your baby, no way.

He doesn't drive, never has, you can't even apply unless you've been fit free for a year. Will definitely look into quarries so thank you for that. We had the conversation and he took it hard and went in a huff, he's ashamed and embarrassed and is finding it hard to swallow his pride. He was real upset when I told him I was worried about them being alone. We do need to speak to someone so I will contact quarries and as mentioned I'm still waiting on a call back from his nurse. At the neurologist he was honest (I was there) and he got out on a different med which is benzo related so yeah he's sleepy and spacy but by mid morning he's fine but as far as I am aware his meds even without the benzo at night make him feel disconnected as he put it. I need him to get taking his meds under control and for him to be fit free for an extended time to be able to feel confident in him being alone with our son for even the shortest of times. I do feel for him but my sons safety is most important I feel.

Try Epilipsey Action and see if there is a specialist nurse available in your area.

Yanbu. Imagine him being faced with a poonami and bathing the baby while you're out...

You should NEVER leave ds alone with him, even if he's completely on top of his meds all the time. Why risk it?

Oh phew. My mistake. I misinterpreted a pps comment. He’s not ashamed and embarrassed to take his meds though unfortunately. Please don’t let yourself be pushed into leaving your baby.