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night time epilepsey
Fri, 11/23/2007 - 09:32Comments
Re: night time epilepsey
Submitted by abl126 on Thu, 2008-06-19 - 09:01
Re: night time epilepsey
Submitted by bksutton on Thu, 2008-06-19 - 10:05
Our daughter was diagnosed with BREC (Benign Rolandic Epilepsy of Childhood) 2 years ago. We went through a very similar situation. She had "night terrors" as a baby, and when she started crying hysterically in her sleep around age 8 or so we assumed it was the same thing. However, we finally witnessed a full seizure when we found her on the floor of her bedroom shortly after going to bed. She apparently partially woke up and felt "funny" and got out of bed before falling to the floor. (We have since then had many serious discussions about STAYING in bed when this happens--so as not to get hurt.) We called 911 and took an ambulance ride to the hospital. My husband and I were shocked when the doctor told us kids don't generally have night terrors after age 5--that this was something else. The next morning an EEG showed BREC. (Our neurologist has since told us that BREC often goes undiagnosed because parents assume their children are having nightmares or terrors--unless they witness a seizure, and then kids outgrow the condition with puberty so it goes away.)
We opted not to start medication at the time, and we did fine managing the occassional seizure. However, as she has approached puberty (she turns 13 this summer), she decided she wanted the medication as the seizures were coming more frequently. She was to a point where she was having trouble falling asleep and was afraid to stay overnight anywhere--she wasn't sure she wanted to go to camp this summer which broke my heart since she's gone for 3 years. She has had no seizures since starting the medication in March and seems much happier. In fact, she'll be at camp for her 13th birthday! The stress of worrying about having a seizure is gone. Hopefully as she progesses through adolescence, she'll outgrow this. We'll probably have her go off meds and do an EEG in a couple years to check.
The good thing now is since BREC has a tendency to run in families (even though we don't know of any relatives with it) if any of our children's children down the road exhibit this nighttime behavior, they'll know what to check for and can then make decisions as to how to manage it.
Our daughter was diagnosed with BREC (Benign Rolandic Epilepsy of Childhood) 2 years ago. We went through a very similar situation. She had "night terrors" as a baby, and when she started crying hysterically in her sleep around age 8 or so we assumed it was the same thing. However, we finally witnessed a full seizure when we found her on the floor of her bedroom shortly after going to bed. She apparently partially woke up and felt "funny" and got out of bed before falling to the floor. (We have since then had many serious discussions about STAYING in bed when this happens--so as not to get hurt.) We called 911 and took an ambulance ride to the hospital. My husband and I were shocked when the doctor told us kids don't generally have night terrors after age 5--that this was something else. The next morning an EEG showed BREC. (Our neurologist has since told us that BREC often goes undiagnosed because parents assume their children are having nightmares or terrors--unless they witness a seizure, and then kids outgrow the condition with puberty so it goes away.)
We opted not to start medication at the time, and we did fine managing the occassional seizure. However, as she has approached puberty (she turns 13 this summer), she decided she wanted the medication as the seizures were coming more frequently. She was to a point where she was having trouble falling asleep and was afraid to stay overnight anywhere--she wasn't sure she wanted to go to camp this summer which broke my heart since she's gone for 3 years. She has had no seizures since starting the medication in March and seems much happier. In fact, she'll be at camp for her 13th birthday! The stress of worrying about having a seizure is gone. Hopefully as she progesses through adolescence, she'll outgrow this. We'll probably have her go off meds and do an EEG in a couple years to check.
The good thing now is since BREC has a tendency to run in families (even though we don't know of any relatives with it) if any of our children's children down the road exhibit this nighttime behavior, they'll know what to check for and can then make decisions as to how to manage it.
Re: night time epilepsey
Submitted by rdpsac on Thu, 2008-06-19 - 05:35
We have a 10 year old son. His symptoms sound very similiar to your sons. About 6 months ago just shortly after going to sleep he was breathing very funny. Almost a snore. My wife and I went to a different room to discuss what we thougth it was. He started to moan and seemingly wake up. He started to scream and writh around the bed. His eyes were open, pupils fixed and dialated. He was non responsive like we were not there. We called 911 and when the ambulance came there was no difference. he screamed and writhed, no response to the paramedics. We took him to our local hospital he had calmed down and fallen asleep at the hospital. Upon waking he remembered nothing. He was given a Cat Scan, an MRI, and and EEG. They could find nothing physically wrong with him. There was a slight abnormality in his EEG just and he dozed off to sleep. He was refered to an Epileptic seizure specialist at Yale New Haven Hospital. He was diagnosed with Benign Rolandic Epilepsy. The EEG indicated an iregular brain wave in the rolandic section of his brain while transitioning from the first "light" stage of sleep to the deep sleep just before REM sleep. It could cause dreams and because he hasn't fallen into the deep sleep it can result in "night terror'' like episodes or sleep walking. He has had one more episode where he actually had a seizure shortly after falling asleep and then started to fall back to sleep. He was breathing very irregularly and stopped breathing for several seconds a couple of times. We called the paramedics because of the breathing and before they got there he had fallen back to sleep. they tried to wake him up and the screaming started again. They HEAVILY sedated him and took him to the hospital. He was affected by the sedative for several days. When he awoke in the hospital he again remembered nothing. We should have just let him go back to sleep. We have subsequently learned that people usually have very irregular breathing after a seizure and if he falls back to sleep the specailist recommended we let him sleep. They say he should out grow it during puberty. He has had night terrors as a younger child. Crying and crying after going to sleep, not responding to conforting or consoling. He would wake after 10-15 minutes and not know why he was crying. He would go back to sleep and not remember it in the morning. Other than seizure medications they is no treatment. It's very traumatic to watch your child experience this. We are trying to learn and adjust as best we can. Does anyone have any further information or similiar history?
We have a 10 year old son. His symptoms sound very similiar to your sons. About 6 months ago just shortly after going to sleep he was breathing very funny. Almost a snore. My wife and I went to a different room to discuss what we thougth it was. He started to moan and seemingly wake up. He started to scream and writh around the bed. His eyes were open, pupils fixed and dialated. He was non responsive like we were not there. We called 911 and when the ambulance came there was no difference. he screamed and writhed, no response to the paramedics. We took him to our local hospital he had calmed down and fallen asleep at the hospital. Upon waking he remembered nothing. He was given a Cat Scan, an MRI, and and EEG. They could find nothing physically wrong with him. There was a slight abnormality in his EEG just and he dozed off to sleep. He was refered to an Epileptic seizure specialist at Yale New Haven Hospital. He was diagnosed with Benign Rolandic Epilepsy. The EEG indicated an iregular brain wave in the rolandic section of his brain while transitioning from the first "light" stage of sleep to the deep sleep just before REM sleep. It could cause dreams and because he hasn't fallen into the deep sleep it can result in "night terror'' like episodes or sleep walking. He has had one more episode where he actually had a seizure shortly after falling asleep and then started to fall back to sleep. He was breathing very irregularly and stopped breathing for several seconds a couple of times. We called the paramedics because of the breathing and before they got there he had fallen back to sleep. they tried to wake him up and the screaming started again. They HEAVILY sedated him and took him to the hospital. He was affected by the sedative for several days. When he awoke in the hospital he again remembered nothing. We should have just let him go back to sleep. We have subsequently learned that people usually have very irregular breathing after a seizure and if he falls back to sleep the specailist recommended we let him sleep. They say he should out grow it during puberty. He has had night terrors as a younger child. Crying and crying after going to sleep, not responding to conforting or consoling. He would wake after 10-15 minutes and not know why he was crying. He would go back to sleep and not remember it in the morning. Other than seizure medications they is no treatment. It's very traumatic to watch your child experience this. We are trying to learn and adjust as best we can. Does anyone have any further information or similiar history?