Did post in special needs but no response epilepsy I'm frightened.

[Theodoreb]

DD2 had a seizure back in July lasting 30 minutes she was in rescuss over a hour and being honest experience was so frightening. Well since then she been having what may possibly be mini seizures it follows a strict pattern 20 minutes behavior disturbance followed by 10 minutes zoning out completely unresponsive then ten minutes of spasms (her legs and arms twitch uncontrollably) then a further ten minutes of zoning out then she is quite clumsy and disoriented.

We had results of her EEG today apparently she had unspecified abnormal brain activity and anomalies. I was asked to keep a close eye and record any episodes if possible. I have 7.5mg madazolam to give to her if a seizure lasts more than five minutes but being honest after seeing that seizure I'm so frightened by the fact that these may become a normal part of life I don't ever want it to happen again. Very frightened and anxious.

Got a reply now so gone over to sn children.

No advice as I don't know anything but bumping for you. Also - might be useful to post her age as that might affect things.

@Theodoreb Sorry to hear this is going on OP. I’ve had epilepsy since I was 18, both tonic clonic seizures and absence seizures. I’m not going to sugar coat it and say it’s nice but with the right meds life can be better.

Thanks both DD2 is 8 at first we were hoping it was a febrile seizure caused by temperature even though she is too old. However no virus or infection was found and owing to the mini episodes they think epilepsy is more likely.

I developed epilepsy as a teenager, and, now I have my own DC and also have a job in which I see other DC having seizures, I can appreciate how terrified my mum must have been. I am lucky that she never showed that and didn't stop me from doing things and going places where I can imagine your first response would be to never let your DD out of your sight in case something happens. Does your DD take regular meds to control her seizures as well as having the midazolam in case of a prolonged seizure? I am lucky that, despite a couple of issues, my epilepsy is now well-controlled by medication with minimal side effects, and epilepsy has not stopped me doing anything I wanted to do except learn to drive (I have been seizure free for a long time and could learn now but I couldn't when I was 17). I have a good job, have travelled, have DC.

@happypotamus it fills me with hope that you have had a good life. DD2 is not on medication as we were waiting for this test to confirm. Unfortunately she has been frightened by her first seizure as she was kept in hospital over a week in July.

I try to let her live as normal a life as possible but I do follow her doctors instructions that she is not allowed to be alone outside, bath alone or climb.

But other than that I allow her to behave as normal although being honest I'm constantly frightened, but I don't show it she's a very active outdoor child and we haven't let this stop her and as she was only 7 when this happened, she was used to being supervised outside. So has not noticed any change as she is so young I plan to just continue a high level of observation.

Her school have also received training to administer madazolam and we are instructed to call a ambulance immediately on the start of a seizure. Glad to hear she can still live a full almost normal life however.