Mrs_Rachel23
09-09-2005, 07:55 PM
Hello, I'm new to this board, this is my first post..
My son was just recently Diagnosed with Rolandic Epilepsy, and i was devastated, i was 85% sure he had Epilepsy, but i guess there was that hope that it would not be found.
Any how, the seizure's that my son has, are while he is sleeping, and only part of his body is shakeing, the first one was December 22, 2004 11:31pm, i had called 911, the Ambulance had came and took him to the hospital, he was discharged 4-6 hours later, and was told that he had a febrile seizure, so i felt confadent, until July 27th 2005 he had another, then i was sorda at ease becasue i had read somewhere that the "febrile" seizure's usually have 1 more following the first 1 but within a year of the first one, so i thought ok its over now... and yet once again they diagnosed him Febrile seizure again.
Went home everythings fine.. I did think how strange it was he would have these seizures while he was sleeping, he indeed woke up during them but that always stayed in my mind.
So here comes september 1st, 11:45 in the night he sleeping sound, and his daddy just so happens to check on him and seen him moving and shakeing, so i called 911 again (3rd time) in less than a year.
The first 2 seizures i had him at the # 1 hospital for Pedi-atrics, so this time i decided lets take him to a different hospital and see what they say, so i had EMT take him to the hospital where he was actually born and so the nurses an doc's right away took him in and started doing EKG's, he had oxygen i think cuz he was stressed, any how, his normal post seizure reaction are he is sorda outa of it for about an hour or 2 after but awake, this time he slept right after it, and that was odd to the doctors, they did a CT, EKG he slept threw all of it, they took blood he slept threw that 2. so they were going to do a spinal tap, but he had no fever, they then decided to admit him until we can find out why hes having these seizures, its SO OBVIOUS NOW that he is not having febrile seizures,
So they took him to the 2nd floor at pediatrics, and he is still asleep, its going on 530am now, he hasnt woke up, doc's decide to do an EEG, and so they did it, and we waite it seemed for years for the results to come back, they came back about 18 hours laster.. so here we are now waiting for a nuro to read it.
Finallt one did and he said my son has Rolandic Epilepsy, i was shocked, my hubby and i was looking at each other and we were just stunned, because all these months we thought he had a lil' fever.. damm that other hospital.
So they put him on dylanta, then when he got discharged they got him on trileptal now, i think its spelled right.
My question basiclly comes down to, I was getting his prescription at a rite-aid Pharmacy, and it started to be longer then i had expected it to be, so go and ask, how much longer, the pharmacist said, well this medicine is not been given to a child of this age before, i said what do you mean, he said there has been no testing on how sever or non severe the medication side effects are. My son is 3 yrs old, he turned 3 yrs old abou 3 weeks before the 2nd seizure.
So is there any one out there who know's about this medication or has a child takieing it... i just need to feel some relief, im going crazy.. hes haveing alot of twitches, and major, major, major anger issues..
My son was just recently Diagnosed with Rolandic Epilepsy, and i was devastated, i was 85% sure he had Epilepsy, but i guess there was that hope that it would not be found.
Any how, the seizure's that my son has, are while he is sleeping, and only part of his body is shakeing, the first one was December 22, 2004 11:31pm, i had called 911, the Ambulance had came and took him to the hospital, he was discharged 4-6 hours later, and was told that he had a febrile seizure, so i felt confadent, until July 27th 2005 he had another, then i was sorda at ease becasue i had read somewhere that the "febrile" seizure's usually have 1 more following the first 1 but within a year of the first one, so i thought ok its over now... and yet once again they diagnosed him Febrile seizure again.
Went home everythings fine.. I did think how strange it was he would have these seizures while he was sleeping, he indeed woke up during them but that always stayed in my mind.
So here comes september 1st, 11:45 in the night he sleeping sound, and his daddy just so happens to check on him and seen him moving and shakeing, so i called 911 again (3rd time) in less than a year.
The first 2 seizures i had him at the # 1 hospital for Pedi-atrics, so this time i decided lets take him to a different hospital and see what they say, so i had EMT take him to the hospital where he was actually born and so the nurses an doc's right away took him in and started doing EKG's, he had oxygen i think cuz he was stressed, any how, his normal post seizure reaction are he is sorda outa of it for about an hour or 2 after but awake, this time he slept right after it, and that was odd to the doctors, they did a CT, EKG he slept threw all of it, they took blood he slept threw that 2. so they were going to do a spinal tap, but he had no fever, they then decided to admit him until we can find out why hes having these seizures, its SO OBVIOUS NOW that he is not having febrile seizures,
So they took him to the 2nd floor at pediatrics, and he is still asleep, its going on 530am now, he hasnt woke up, doc's decide to do an EEG, and so they did it, and we waite it seemed for years for the results to come back, they came back about 18 hours laster.. so here we are now waiting for a nuro to read it.
Finallt one did and he said my son has Rolandic Epilepsy, i was shocked, my hubby and i was looking at each other and we were just stunned, because all these months we thought he had a lil' fever.. damm that other hospital.
So they put him on dylanta, then when he got discharged they got him on trileptal now, i think its spelled right.
My question basiclly comes down to, I was getting his prescription at a rite-aid Pharmacy, and it started to be longer then i had expected it to be, so go and ask, how much longer, the pharmacist said, well this medicine is not been given to a child of this age before, i said what do you mean, he said there has been no testing on how sever or non severe the medication side effects are. My son is 3 yrs old, he turned 3 yrs old abou 3 weeks before the 2nd seizure.
So is there any one out there who know's about this medication or has a child takieing it... i just need to feel some relief, im going crazy.. hes haveing alot of twitches, and major, major, major anger issues..