Does anyone else have a child with panayiotopoulos syndrome? I would be interested in speaking with someone else that knows first hand about this type of epilepsy as research and talking with doctors is not the same as knowing first hand.
I have made a page on facebook called epilepsy awareness Moomin's story , its fairly new so a few bits on there but I will add more to it. I started the facebook page after her last hospital admission just a few weeks ago , this was the worst she has ever been , she was in bed with me as she couldn't settle to sleep , just an hour and a half after she fell asleep i woke to a loud gasping noise , she was vomiting but non responsive , pupils enlarged , eyes tipped back to the right this started off as a focal seizure after 2 and a half minutes became generalised, she began the chewing motion and nostrils flaring and her left hand and fingers became rigid , she stopped for just 1 and a half minutes but was still non responsive, this is when I called for an ambulance, then she started again with the chewing , swallowing rapidly , nostrils flaring , left and right arm jerking , drooling and foaming at the mouth , this finished for just one minute then she started the same again for 6 minutes, during this 3rd one the paramedic arrived as it was finishing, another minute later she had a fourth , then a 5th then a 6th one, the 6th one lasted over 20 minutes and during this one all her limbs were jerking ,facial twitches, eyes still tipped back to the right , she peed at least four times during these seizures. the ambulance finally arrived as the big one was calming down but only stopped for less than a minute then would go again for between 3 and 6 mins, in total she was seizing for 6 & a half hours. she is not to be given emergency medication to control seizures by ambulance technicians as with this type of epilepsy the emergency meds can cause apnea but she was given the emergency meds after a while of being in A&E the first lot given anally did not work so she was given another intravenously which did finally control her seizures. it took her 17hours to get back to her self although she was still in a state of confusion couldn't walk or talk properly . her single seizures take her about 5hours to become herself again. her triggers sometimes seem to be tiredness , excitement , hunger occasionally illness but she has had viruses before that haven't triggered her epilepsy. she was started off on the medication Tegretol (carbamazepine) and was on it for some time but after a while she continued to have a lot of absences even at maximum dose so was weaned off that while introducing Epilim (sodium valproate) she's been on this for some time now but this medication is not right for her , since being on this she has been complaining more of tummy pain, nausea , having heart palpitations , behaviour issues and hair falling out so is now having lamictal ( lamotrigine ) introduced with a view of weaning her off of the Epilim .
Awww bless you @A MyEpilepsyTeam Member x
i am 52 yrs old and have had epilepsy since age 6. a lot of your daughters seizures, activities, symptoms ad such sound like me. way back then there only 2 types of seizure. Petit Mal and Grand Mal. i have both. i pee myself every time i have a grand mal..which is basically going all the way out for 2-5 minutes. seizure i had 2 yrs ago was the worst ever. i was hospitalized for 5 days. when i came to in a hospital room i didnt remember a thing. i didnt know who i was etc....very scarey. i laid there for 5 days staring at the tv...ate very little, couldnt talk. it took me that whole time to come back to myself. God bless your daughter, and you too.