LukeSeizures120509Part1
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I was just like you. And my wife was the calm one as well. After my daughter was diagnosed with epilepsy I watched her every second analyzing every move, reaction. Was that normal? Was that a seizure? Are you feeling ok? Brings back so many emotions. I really hope all is going well for you guys.
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I can really understand about how you would be sick of seeing them now.. It kind of takes over your life for a time there, right?
Luke is so much worse than my son was so I had real difficulty with knowing what was wrong. I trowled the net trying to find something.
Not many other people saw what I was seeing. I think my hubby thought I was loding it.
41 seizures (poor thing) Luke, a lot for a little boy to deal with. I do hope things settle for you all very soon.
Good luck now
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Hi What a lovely child you have, Its a shame he has to go through this. I have a son with a similar story, he is 5. It took a while to get control but he is very stable now.
I have been following Luke's story I hope you keep us updated. I hope that Luke finds stabiltiy very soon.
Thanks, although it s hard to watch I am sure it will help many, it sure would have helped me.
The very best to you all.
TheFreelily 1 year ago
Thks Feeliliy. He has his moments . Glad to hear your son is doing well. Luke turned 4 in Feb. He is doing ok at the moment and is having some small seizure free periods. Hopefully he won't get tolerant to the drugs and get worse again. But it can be very random with Luke ie. a few good days and then a really bad day, and so it repeats.. We did the EEG monitoring in the hospital the other week and they captured about 41 seizures to analyse. All the best to you guys as well!
kplowman 1 year ago
Initially just posted it so our relatives could see what was happening, what they looked like, but I think it is useful to help others see what they look like eg. the myoclonics. I've found it useful to see what other people's seizures look like also. Especially at the start. Although I've seen too many seizures now and am sick of seeing them!
kplowman 1 year ago
Was he having Myoclonic's (those breif episodes0 that led up to the tonic clonic? Hope he's doing well now
Gretchenfan76 2 years ago
Hi, yes he was having myoclonics. He gets myoclonics , drops, head drops & tonic clonics. He was diagnosed with generalized epilepsy but as its not been well controlled they are now thinking it might be partial/focal epilepsy, so going into hospital in 2weeks time for aVideo EEG monitoring. He's doing ok, he usually averages 20-30 myoclonics per day, a couple of drops per day and a tonic clonic once a month.
kplowman 2 years ago