Complex febrile seizures

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Has anyone had any experience with complex febrile seizures? My daughter has had 5 in the last yr, all over 20minutes long, goes completely floppy and unresponsive, breathing can sometimes go too (have had to do cpr whilst waiting for ambulance), last seizure was different and she got Todd’s paralysis where she couldn’t use her right side of her body for 24hrs and had drooping on her lips. She is under a neurologists however I just wanted to see if anyone else had anything similar as there is not much online. Thank you

what has the neurologist said?

When things are presenting in an unusual way it's unwise to read across from anyone else's experience. Seizures are very individual. Your neurologist is going to be much better informed than an internet comments section no matter how helpful.

With all due respect I’m not asking for anyone’s medical opinion, she has a team of doctors for that I merely asked if anyone had experienced anything similar. Also I decide what I feel is wise for me or not. Your comment is not really helpful.

They are not really sure. She is still being investigated and having tests including genetics.

I think the PP’s post was very helpful 🤷‍♀️

Hi
My daughter has also had complex febrile seizures, lasting up to 40 minutes in the past. It was very traumatic and she is now on Keppra and its going ok so far. She had a hypoxic brain injury just before birth so that is our cause and we haven't been referred to genetics. How old is your little one and how is she doing now? It's very isolating and I agree, everything online refers to simple febrile seizures, I hope you're doing OK!

My DS had complex FC but they were not long but would have 2 or 3 in one day. My families has GEFS+ which are febrile seizure that carry on after the age of 5. Its genetic and goes back many generations in my family .
DS had over 20 and had his last one at the age of 13 .
DD had 4 at the age of 3 .

M