Epileptic, unsafe to look after my DS

[emmalinewre]

Hi All. Looking for some advice. I have grand mal seizures with no warning.

This has resulted in my almost three year old having to attend nursery full-time to keep him safe. At the cost of £1800 per month, my god. It’s crippling us. I can’t work and get no benefits.
Anyway.
When my toddler is ill and off nursery, my husband has had to leave work on numerous occassions so I can go back to bed if under-slept, as it’s too risky for me to be alone with my toddler. (Sleep deprivation is my trigger.)
This isn’t sustainable and I’m worried he’s going to start getting in trouble at work.
Does anyone have any advice on what I can do to avoid my husband having to do this?
Safety tips, general advice, support of some kind, I don’t know - something. Thank you!

I’m sorry OP this sounds really difficult. Have you checked that you’re definitely not entitled to anything? Especially if only on 1 income with high childcare, and if you have been assessed as unable to work? Have you looked into PIP? X

Have you contacted social services at all? Ask for an assessment. They're not just there for neglect.

Have you contacted the epilepsy society to see if they can offer advice?

also are you under a neurologist and know you are getting the best care and medication available in case there is something out there which could improve your condition.

your life sounds very hard so i hope you find some help.

Hang on in there, because your child is getting older. I have some professional experience of parents with epilepsy and your child (assuming your child has no additional needs) can, if you wish, be drilled in what to do if you have a seizure by around school age. You can teach a child to make a 999 call and to call someone else such as another parent or neighbour who is ready to be on call. There needs to be someone easily available on call but they do not need to be present at all times.

I'm not saying this is ideal but it is done by many families with an epileptic parent (and other conditions such as diabetes). You will probably have seen this type of call on the news and on social media.