to not want to leave ds and go back to work.

[Justkeepswimminglalala]

So, as not to drip feed, ds (6mo) started having seizures at 3 months old and has been diagnosed with epilepsy. Currently on medication for this but so far is not responding to treatment. Medication increased after each seizure.

He is doing well developmentally but his seizures are a combination of focal and generalised seizures which have so far lasted up to 45 minutes long and the shortest being 19 minutes. He has rescue medication but so far does not respond to this, or not well anyway. He always needs an ambulance called and has to stay overnight in hospital for observation.

I am terrified of having to leave him to work. Financially, it is not an option for me to not work, but I am terrified of something happening when I'm not there. I work in a role were it is not possible for me to leave in an emergency until someone can relieve me. Ds will only ever be with dp or my dm if I'm working but aibu for being so worried? Ds has been with me constantly since his first seizure and I just can't bare the thought of not being there for him if it happens.

You have another 3months, plus could you take a further 3 (savings allowing)?
My brother has epilepsy and like your son it took a bit to get him on the right dosage, however he has lived a completely normal life since the dosage was correct. He has chosen not to risk not taking it to see if he’s outgrown it but lots of children do.

Plus you’re not being unreasonable to worry at all, but I’m sure this fear will lessen slightly once it’s managed

I'm so sorry I can't even imagine how terrifying this must be for you!

Yadnbu for being worried I think anyone in the same situation would be... is there any way you could negotiate with work some sort of situation to leave if there is an emergency? I would try and take comfort in that ds is with DP or dm, although I know this will be hard as you want to be there yourself x

You are not being unreasonable. I havr uncontrolled epilepsy and it knocks mt confidence. However, it may be good for you both to start learning how to be ok with him not being in your sight. Have plans and a serious discussion with work about what yo do in x, y amd z situation. Having plabs for eaxh situation will help to ease the panic.

I feel for you. Epilepsy is tough going but you can create a rich life despite it.

I'm due back at the end of January, ds will be 8 months then and due to a difficult pregnancy, and working in a very active role, I went on maternity leave 4 weeks early. So my pay will stop at the end of January.

I'm pleased to hear your brother found medication that worked for him and is doing so well. It's always so good to hear positive outcomes from other people with epilepsy.

I think speaking to work about an emergency plan will be the best solution. I guess this is maybe not so much aibu and more a wwyd. Just finding the whole thing so tough but in reality know I need to get on with it.

It is a hard learning curve, and each seizure can be a set back, but you will all get there. Be kind to yourself. Epilepsy has the ripple affect and each seizure has different effects on everybody around them.

Could you get some money paid for you to be his carer? It may allow you to be off for longer?