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Epileptic mum - what about the safety of my toddler?

6 replies

pormenjus · 16/12/2022 22:18

I'm epileptic. I've had a seizure recently in front of my almost 2 year old son. I have no warnings and just drop - grand mal. I usually sustain some sort of injury from the drop.
I'm a stay at home mum and terrified of being alone with my son now.
What can I do?
I can get him into a childminder a couple of days a week, but no places in any nursery close by and the money for that is impossible anyway.
How do I keep him safe? I'm afraid to even take him out in the pram.
I feel like I need another person around in the daytimes while my partner is at work.
Where do I start? A mother's help perhaps? Could I approach a charity or something?
Radical ideas welcome - this really might be a matter of life and death, I can't imagine what could happen were it to happen again.
Thank you

OP posts:
Mumof1andacat · 16/12/2022 22:29

I would try your epilepsy nurse specialist. They normally work alongside the dr/consultants and are much better at dealing with practical matters.

Mumof1andacat · 16/12/2022 22:32

Also the charity epilepsy action might be able to provide advice

HumourReplacementTherapy · 16/12/2022 22:44

An Apple Watch can detect when you have a fall/alerts emergency services.
I don't know if any other watches have that feature.
I used to have seizures (not had one since eldest was 2 and he's 23 now) but I did think it would have been a great thing to have when I was worried re seizures.

Absolutesuperstar · 16/12/2022 22:47

My grandma wears a wristband which can detect when she has a fall. I think it was arranged through adult social services. She pays a small monthly fee.

gogohmm · 16/12/2022 23:05

A seizure detection dog could give the the confidence you need. My ddog is not even properly trained but he lies by dsd before she goes into seizure (he's only met her a few times, complicated reasons) the properly trained ones will alert you and will be trained to stay with your child too. You can also have a medic alert wristband linked to your records. I would also suggest clear instructions attached to your pushchair of who to call - it means if a stranger like me came across you I would know you were had epilepsy and how to contact your next of kin too for your child. I'm sure epilepsy action has forums, pretty sure I was on one for my dd (my dd has a different form of epilepsy to dsd). Talk to experts, they can help plus if you need care then the council can assess you

weaselwords · 16/12/2022 23:12

Epilepsy Action have lots of good advice www.epilepsy.org.uk/living/parents-and-children/parents-with-epilepsy
Good luck!

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