Hi just wanted to share our story and hope someone can tell me it's normal.
My son is a fit healthy 4 year-old with no medical issues.
Last November at 7pm just as he was falling to sleep he had a 14 min long (what I now know to be) sezure. He went stiff eyes rolled to the ceiling and just kept swallowing while being unresponsive. That was some scary shit... So went to a and e were kept in over night and then releaced with the promise of tests. The next day my son started to have a tick.(head and arms jerk) a few days later he started to have moments of absence.
This continued while we waited for tests first one being a video eeg. We captured some of the jerks while doing the eeg which was great. What wasn't great is we were told he deffinatly didn't have epilepsy and it might be autism or something else..
Next test 24hr eeg. Got some good data from that one. Now they think it might be epilepsy bit the specialist didn't want to take him on. (Ego much)
Next 50 min MRI under sedation.
More meeting with non epilepsy specialists and me starting to lose my temper.
At the end of our latest meeting my natural sarcasm started to escape and I may have said some things.
1hr later we receive a phone call saying the epilepsy specialist will take us on and my boy has got epelepsy and here's a bottle of epelete. Thanks.
Here's why my missunderstandings start.
We give him the drug and the next day I have a different little boy drowsy angry but without 20-30 tick a day.
We have had a few people comment on how our son is like a different person... And that's my issue is it worth it. Doping up my child just so that he dosnt have these judders.
Next part have been taking drug for 1 week last night at 3am baby monitor wakes us up he is having a sezure (now the drugs don't work they just make you worse) so ambulance called into hospital. After getting checked out we.are.told the epilepsy specialist will be doing the rounds today so we could see him (great actually see the guy who diagnosed him) so we waited and waited and at 1pm he turned up. We have a very one sided conversation where I feel like I am being red a script.
So I pipe up saying what's the point in sedating him. I get told in broken English his epilepsy is very bad. Ok well you are the dickhead that didn't want to take us sooooo.
Anyway my main question as I write this at 4am because I don't want to sleep incase my boy chokes himself in his sleep. Dose it get any better or is he going to be constly stoned for the rest of his life (due to the meds).
My son is a fit healthy 4 year-old with no medical issues.
Last November at 7pm just as he was falling to sleep he had a 14 min long (what I now know to be) sezure. He went stiff eyes rolled to the ceiling and just kept swallowing while being unresponsive. That was some scary shit... So went to a and e were kept in over night and then releaced with the promise of tests. The next day my son started to have a tick.(head and arms jerk) a few days later he started to have moments of absence.
This continued while we waited for tests first one being a video eeg. We captured some of the jerks while doing the eeg which was great. What wasn't great is we were told he deffinatly didn't have epilepsy and it might be autism or something else..
Next test 24hr eeg. Got some good data from that one. Now they think it might be epilepsy bit the specialist didn't want to take him on. (Ego much)
Next 50 min MRI under sedation.
More meeting with non epilepsy specialists and me starting to lose my temper.
At the end of our latest meeting my natural sarcasm started to escape and I may have said some things.
1hr later we receive a phone call saying the epilepsy specialist will take us on and my boy has got epelepsy and here's a bottle of epelete. Thanks.
Here's why my missunderstandings start.
We give him the drug and the next day I have a different little boy drowsy angry but without 20-30 tick a day.
We have had a few people comment on how our son is like a different person... And that's my issue is it worth it. Doping up my child just so that he dosnt have these judders.
Next part have been taking drug for 1 week last night at 3am baby monitor wakes us up he is having a sezure (now the drugs don't work they just make you worse) so ambulance called into hospital. After getting checked out we.are.told the epilepsy specialist will be doing the rounds today so we could see him (great actually see the guy who diagnosed him) so we waited and waited and at 1pm he turned up. We have a very one sided conversation where I feel like I am being red a script.
So I pipe up saying what's the point in sedating him. I get told in broken English his epilepsy is very bad. Ok well you are the dickhead that didn't want to take us sooooo.
Anyway my main question as I write this at 4am because I don't want to sleep incase my boy chokes himself in his sleep. Dose it get any better or is he going to be constly stoned for the rest of his life (due to the meds).