DS6 has just come out of hospital (Tuesday) after having a massive seizure. Utterly terrifying for us all, he was unconscious for over 2.5 hours and needed to be ventilated. At one point H and I were asked to leave the room and had to sit in the relatives room wondering whether he was going to make it or not. When he went for emergency CT scan we were followed with the crash team and lead paediatric consultant, never in my whole life have I felt so helpless.
He has had 4 previous seizures over a 3 year period which had been put down to febrile convulsions, although his temperature was never very high, I questioned this at the time, but was reassured that it was the speed of the temp rise rather than the temperature reached IYSWIM, these were diagnosed at another hospital, rather than the one we went to on Sunday. The new consultant we saw is now, due to the severity of this latest seizure and a normal temperature, not happy with this diagnosis and is arranging an EEG to test for Epilepsy.
His CT scan came back with a "mild mid-line abnormality" - anyone any ideas?? He also had an MRI, the initial results of which showed no gross abnormality but we are waiting on the full report. There has also been some question as to whether he has absence's. This was first mentioned at pre-school and has also been mentioned at "big" school, we had his hearing checked and that was all good. The teachers all say the same thing, that he seems to blank out for 5-10 secs and then switch back on, but is often very upset following these episodes. I feel horrid now as I have always put them down to "selective hearing"!
I am absolutely terrified of this happening again, I really thought we were going to lose our little boy. Before the seizure on Sunday he complained of feeling sick, tonight he says he feels sick, he looks terrible but he's finally dropped off to sleep. I know I won't sleep a wink, I want to camp out in his room but my H says theres no need and that he probably ate too much (he has eaten for England today!)
Anyone with any advice, I'm really anxious and out of my depth. Please share your experiences, if he seizures in the night will we hear him, is he in danger? Is 2.5 hours unconsciousness usual, am I being over cautious? etc etc.
Many, many thanks.