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Baby epilepsy diagnosis — in shock

2 replies

esgill · 10/06/2024 22:32

I’ll try and be brief…

8-month old baby had an episode 2 weeks ago they diagnosed as a BRUE (brief unexplained event). She went floppy suddenly and looked like she was going to pass out but then came to and regained head control within a minute.

yesterday, the same thing happened except her arms were shaking and she was moaning.

we took her straight to a&e. they admitted her to the ward. She had an eeg and the cardiologist said the readings consistent with epileptic seizure activity in Occital lobe (though said the positioning doesn’t mean much in infants) and he diagnosed focal epilepsy and said we should have an mri but I requires general anaesthesia and genetic blood tests (done today). He said if it happens again to consider getting her on medicine.

today, the same again after being discharged but she was also screaming.

tomorrow we’re going back in to get a heart ultrasound to rule thing: out.

has anyone else here got a baby with an epilepsy diagnosis? What’s the outlook?

developmentally they’re not worried as she’s hitting all her milestones. Neurologist said when babies are so young it’s unclear how things will go and that she could grow out of them. She had two separate colds with both these seizures but no fever.

I’m an FTM and atm sick with worry…

OP posts:
OhMaria2 · 11/06/2024 00:22

esgill · 10/06/2024 22:32

I’ll try and be brief…

8-month old baby had an episode 2 weeks ago they diagnosed as a BRUE (brief unexplained event). She went floppy suddenly and looked like she was going to pass out but then came to and regained head control within a minute.

yesterday, the same thing happened except her arms were shaking and she was moaning.

we took her straight to a&e. they admitted her to the ward. She had an eeg and the cardiologist said the readings consistent with epileptic seizure activity in Occital lobe (though said the positioning doesn’t mean much in infants) and he diagnosed focal epilepsy and said we should have an mri but I requires general anaesthesia and genetic blood tests (done today). He said if it happens again to consider getting her on medicine.

today, the same again after being discharged but she was also screaming.

tomorrow we’re going back in to get a heart ultrasound to rule thing: out.

has anyone else here got a baby with an epilepsy diagnosis? What’s the outlook?

developmentally they’re not worried as she’s hitting all her milestones. Neurologist said when babies are so young it’s unclear how things will go and that she could grow out of them. She had two separate colds with both these seizures but no fever.

I’m an FTM and atm sick with worry…

I don't have any experience with epilepsy but big hugs, that sounds really frightening. I was terrified all the time when my son was under a year old, and I am a FTM too so I understand. I hope your daughter will be OK.

buffyslayer · 11/06/2024 00:38

Not outlook wise but it might help with how it feels
After a seizure I was disoriented, so so tired and grouchy. It feels like people are trying to drag you out of sleep when you haven't slept in a week
So screaming, grouchy, crying, all really normal Flowers

I had them as a child but it was following a head injury

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