aprilr607
07-05-2004, 11:48 PM
About a month ago i found my 14 yr old son unconcious in his bed after rushing him to the er and all the tests in the world had been done we still have no answers. He had been taking accutane, the doctors said it could be a side effect from that but it may also be brought on by puberty we just dont know but it seems to be happening mostly while he is asleep early in the morning.
Has anyone experienced this, do you have any information you can give us. Do you know what the percentage is of a teens seizures stopping.
If you have any storys or information you can give us we would really appreciate it.
Thank you,
April
Has anyone experienced this, do you have any information you can give us. Do you know what the percentage is of a teens seizures stopping.
If you have any storys or information you can give us we would really appreciate it.
Thank you,
April
Sponsor
tkdmom96
07-06-2004, 12:34 AM
Hi April, Welcome to the boards!
Please read some of the threads that discuss sleep seizures. I'm surprised the doctor didn't want to remove the Accutane first, to see if that was the cause. Usually all "new" items that have entered one's life are looked at first. New med, new food, travel, recent injuries, then the history looked at.
How many times has this happened? According to some of the info I've read here there is a time in the sleep cycle that can have something to do with seizures. Either just before awakening or at awakening. I would recommend looking into finding a Neurologist or an Epileptologist to do a sleep EEG in the hospital, an EEG and an MRI. These are all diagnostic tests to confirm E or find where the seizures might be coming from. Do they happen frequently? Is he on any anti seizure meds yet? Usually if there are more than 2 or 3 "unprovoked" seizures, it leads to a diagnosis of E.
There are great people here with lots of good info. Continue to ask questions, be as specific as you can (I know you're new to this), provide as much detail as possible (without sending out anything that would be TOO personal i.e.>your hometown, etc.) and you should get some direction.
I came here 2 years ago looking for info and that info lead us to a new specialist (Epileptologist), a years worth of testing, two surgeries in the last 3 months and our daughter has so far, been seizure free! She is 16, and has had seizures since 9 months old.
There is always hope! Hang in there!
Vicki
Please read some of the threads that discuss sleep seizures. I'm surprised the doctor didn't want to remove the Accutane first, to see if that was the cause. Usually all "new" items that have entered one's life are looked at first. New med, new food, travel, recent injuries, then the history looked at.
How many times has this happened? According to some of the info I've read here there is a time in the sleep cycle that can have something to do with seizures. Either just before awakening or at awakening. I would recommend looking into finding a Neurologist or an Epileptologist to do a sleep EEG in the hospital, an EEG and an MRI. These are all diagnostic tests to confirm E or find where the seizures might be coming from. Do they happen frequently? Is he on any anti seizure meds yet? Usually if there are more than 2 or 3 "unprovoked" seizures, it leads to a diagnosis of E.
There are great people here with lots of good info. Continue to ask questions, be as specific as you can (I know you're new to this), provide as much detail as possible (without sending out anything that would be TOO personal i.e.>your hometown, etc.) and you should get some direction.
I came here 2 years ago looking for info and that info lead us to a new specialist (Epileptologist), a years worth of testing, two surgeries in the last 3 months and our daughter has so far, been seizure free! She is 16, and has had seizures since 9 months old.
There is always hope! Hang in there!
Vicki
aprilr607
07-06-2004, 02:47 AM
Thank you so much for your reply, yes after the first set of seizures a month ago he actually had a total of three that day, 3 days in ccu, mri (normal), cat scan (normal), lumbar puncture (normal) and 2 eegs that were also normal we went home on Keppra meds and we did take him off the accutane and for almost a month we thought there were no sz but then i found him unconscious again just 20 minutes after waking him up to give him his meds, he must have had one just after i woke him up but he does not seem to remember any of it. So I rushed him by ambulance to er again and another eeg was done and there was a spot on the right side of the brain that showed sz prone activity. We then had him moved to Texas childrens hospital and he spent 2 nights there and they released him on Trileptal. We have a sleep deprieved eeg scheduled this coming friday at the blue bird clinic ( neuros at tch) but i am not suire that we will really have any answers until he is seizure free for 2 years that is when they say he can go off meds. So far we are 11 nights with no sz.
Does anyone know the percentage of adolecents starting sz and then they go away or do they usually stay or does anyone really know?
I am really glad to hear about your daughter and the surgery being a success that is great news, i hate that she had to go through it but there could be no better age than to gain that personal freedom again than at 16.
I am worried about my son and the mental stress he must be going through although he says he is fine i often worry if that is true. Well I hope to hear from you soon.
April
Does anyone know the percentage of adolecents starting sz and then they go away or do they usually stay or does anyone really know?
I am really glad to hear about your daughter and the surgery being a success that is great news, i hate that she had to go through it but there could be no better age than to gain that personal freedom again than at 16.
I am worried about my son and the mental stress he must be going through although he says he is fine i often worry if that is true. Well I hope to hear from you soon.
April
wokstar
07-06-2004, 03:18 AM
Hey April,
I too started getting seizures in my sleep around the age of 15....we did not know the cause. I was diagnosed with epilepsy after a sleep deprived EEG, ,and went on various medications; until we found one that worked. In the first month after my diagnosis, i still got seizures while sleeping like your son (that is because my tegretol meds were not working...this happened for a while..then switched to epival, still were uncontrolled, and finally 3 years ago started lamictal and it is working!).
Though, when only getting seizures while sleeping, it is sometimes hard to determine if one has had one, if no one witnesses it. Have u ever witnessed your sons seizures? Or only have found him unconscious? What my parents did was use one of those baby monitors. My parents had one and so did I, if my mother (the light sleeper) heard anything unusual, she would check up and was able to discover some of my seizures that way. Though we only did this at the beginning of my diagnosis, (for a few weeks or so).
I"m not sure about the statistics for discovering epilepsy in the teenage years. Epilepsy is discovered at all ages....some "grow out of it"...some don't. I"ve heard of childern who are born with it, but then later seem to stop having seizures.
I first discovered i had epilepsy at age 15, I am now 22...and still experience seizures. So who knows about the future...only good things i hope, haha!
I too started getting seizures in my sleep around the age of 15....we did not know the cause. I was diagnosed with epilepsy after a sleep deprived EEG, ,and went on various medications; until we found one that worked. In the first month after my diagnosis, i still got seizures while sleeping like your son (that is because my tegretol meds were not working...this happened for a while..then switched to epival, still were uncontrolled, and finally 3 years ago started lamictal and it is working!).
Though, when only getting seizures while sleeping, it is sometimes hard to determine if one has had one, if no one witnesses it. Have u ever witnessed your sons seizures? Or only have found him unconscious? What my parents did was use one of those baby monitors. My parents had one and so did I, if my mother (the light sleeper) heard anything unusual, she would check up and was able to discover some of my seizures that way. Though we only did this at the beginning of my diagnosis, (for a few weeks or so).
I"m not sure about the statistics for discovering epilepsy in the teenage years. Epilepsy is discovered at all ages....some "grow out of it"...some don't. I"ve heard of childern who are born with it, but then later seem to stop having seizures.
I first discovered i had epilepsy at age 15, I am now 22...and still experience seizures. So who knows about the future...only good things i hope, haha!
aprilr607
07-06-2004, 01:43 PM
Thanks for the info, yeah i have put a monitor in his room but sometimes the sz are silent or not much noise at all. We have witnessed 2 sz each time in the hospital after finding him in his bed, it almost seems like if you disrupt the sleep cycle by waking him up that he is sure to have another or maybe 2 that day. So far we are almost 2 weeks with no sz and we are taking Trileptal so hopefully it will work.
I feel so bad for him because i know he feels so alone and that everyone is watching him but he seems ok for the time being.
How many sz have you had and how often, do you go to the er evertytime you have one or do you just ride it out, they have given us emergency med in case of 5 minutes or longer and only then do we go to the er.
Well thanks again for all of your info hope to hear from you again.
April
I feel so bad for him because i know he feels so alone and that everyone is watching him but he seems ok for the time being.
How many sz have you had and how often, do you go to the er evertytime you have one or do you just ride it out, they have given us emergency med in case of 5 minutes or longer and only then do we go to the er.
Well thanks again for all of your info hope to hear from you again.
April
tkdmom96
07-07-2004, 02:29 AM
Hi April,
I would say that a seizure that lasts any longer than 5-8 minutes is a call for the ambulance. By the time they get there the seizure could be going on the 10 minute mark, and that is a long time.
Katie's seizures were normally less than 90 seconds (at the longest). So if she had a seizure that lasted 3+ minutes, I was on the phone with 911. That happened twice. Once at 3 years old and another at 5 years old. None since then.
Your son's pattern and your level of comfort are most important.
The sleep deprived EEG will give a better look at his brain waves. How long of an EEg is it? Just an hour or 2? I prefer the 24-36 hour ones. Gives more time to pick up activity, or maybe catch an actual seizure.
What type of seizures does he have? Did they pinpoint that yet? Tonic Clonic, Complex Partial, Simple Partial, Absence, Focal, etc.
How is his memory after a seizure? Does it take him a few minutes to answer questions correctly? Like "where are you?" "what is your name?" "what time is it?" Just a couple every minute or so to check if he is coherent and how long it took. Are you keeping track of things in a notebook? I would definately suggest that.
As far as kids outgrowing their seizures, that was always our hope for Katie. She made it to the "seizure free for 2 years mark" twice. Both times in the weaning process from meds we only made it to the 7th or 8th week and she started having seizures again. I don't know if the age of onset is a factor. That would be a good question for your Neuro.
I'm sure he feels as though he is in a fish bowl right now, but continue to love and support him. Tell him it is only to help keep him safe and until things are better under control. Also watch for side affects to meds such as depression and change in appetite. I don't know much about Trileptol, but a Keppra side affect is depression.
Hang in there and take things one step at a time,
Vicki
I would say that a seizure that lasts any longer than 5-8 minutes is a call for the ambulance. By the time they get there the seizure could be going on the 10 minute mark, and that is a long time.
Katie's seizures were normally less than 90 seconds (at the longest). So if she had a seizure that lasted 3+ minutes, I was on the phone with 911. That happened twice. Once at 3 years old and another at 5 years old. None since then.
Your son's pattern and your level of comfort are most important.
The sleep deprived EEG will give a better look at his brain waves. How long of an EEg is it? Just an hour or 2? I prefer the 24-36 hour ones. Gives more time to pick up activity, or maybe catch an actual seizure.
What type of seizures does he have? Did they pinpoint that yet? Tonic Clonic, Complex Partial, Simple Partial, Absence, Focal, etc.
How is his memory after a seizure? Does it take him a few minutes to answer questions correctly? Like "where are you?" "what is your name?" "what time is it?" Just a couple every minute or so to check if he is coherent and how long it took. Are you keeping track of things in a notebook? I would definately suggest that.
As far as kids outgrowing their seizures, that was always our hope for Katie. She made it to the "seizure free for 2 years mark" twice. Both times in the weaning process from meds we only made it to the 7th or 8th week and she started having seizures again. I don't know if the age of onset is a factor. That would be a good question for your Neuro.
I'm sure he feels as though he is in a fish bowl right now, but continue to love and support him. Tell him it is only to help keep him safe and until things are better under control. Also watch for side affects to meds such as depression and change in appetite. I don't know much about Trileptol, but a Keppra side affect is depression.
Hang in there and take things one step at a time,
Vicki
GarySids
08-04-2004, 12:18 PM
Hi April,
I'm sure your starting to get bombarded now by advice! I have both tonic clonic and simple partial seizures. From your discription it sounds like your son is having tonic clonic (grand mal) seizures. Have the doctors confirmed this yet for you? As far as the 'growing out' of Epilepsy goes I was told all the way through my teens that it is possible to grow out of it and it usually happens when the body finishes growing at around age 20-22. I can't give any advice on the drugs your son has been given as I've not taken them myself. I'm currently on Lamictal and although not seizure free I am now enjoying the least ammount of seizures for many years. Tell your son from me to hang in there, I was 11 when the seizures started and I remember other kids can be really cruel.
I'm sure your starting to get bombarded now by advice! I have both tonic clonic and simple partial seizures. From your discription it sounds like your son is having tonic clonic (grand mal) seizures. Have the doctors confirmed this yet for you? As far as the 'growing out' of Epilepsy goes I was told all the way through my teens that it is possible to grow out of it and it usually happens when the body finishes growing at around age 20-22. I can't give any advice on the drugs your son has been given as I've not taken them myself. I'm currently on Lamictal and although not seizure free I am now enjoying the least ammount of seizures for many years. Tell your son from me to hang in there, I was 11 when the seizures started and I remember other kids can be really cruel.
timbercat
08-06-2004, 09:51 PM
Hi,
What your son is having sounds similar to what my daughter began to experience 3 yrs ago (she will be 16 in oct). She started having grand mals out of the blue. MRI and cat scan were normal, but eeg showed spike wave pattern. She now sees an epileptologist and is on 400 mg Lamictal a day. She started out on depakote, then switched to Keppra (a total nightmare) and now the Lamictal and it seems to be working really well. Once we started to see the dr we discovered that her epilepsy actually began a little over a year prior to her first grand mal. She would have myclonic jerks in her arms and sometimes leg when she woke up or was extremely tired (cant even begin to count the number of bowls of cereal we cleaned up). We just thought these were muscle spasms or something. She was diagnosed with Juvenile Myoclonic Epilepsy. Megan has been seizure free for 14 months now and has been allowed to get her driving permit. She also is in 10th grade, in band, choir, and soccer (yes, neuro has allowed her play, she just tries to avoid head shots). Meg informs all her teachers at the beginning of the school year of her condition and gives them info on how to handle seizures, our school has this ridiculous privacy policy that prohibits them from giving the teachers info on kids such as illnesses and allergies. Keep asking questions of your dr, and keep notes on what your son is doing prior to a seizure. This is a great place to get info. Tell your son he is not alone, when Meg was diagnosed she seemed to accept it ok, but couple months later got very angry so we got her into counseling and now she is very very pro-educational (has even written an article for the school paper about living with E).
God bless,
Terri
What your son is having sounds similar to what my daughter began to experience 3 yrs ago (she will be 16 in oct). She started having grand mals out of the blue. MRI and cat scan were normal, but eeg showed spike wave pattern. She now sees an epileptologist and is on 400 mg Lamictal a day. She started out on depakote, then switched to Keppra (a total nightmare) and now the Lamictal and it seems to be working really well. Once we started to see the dr we discovered that her epilepsy actually began a little over a year prior to her first grand mal. She would have myclonic jerks in her arms and sometimes leg when she woke up or was extremely tired (cant even begin to count the number of bowls of cereal we cleaned up). We just thought these were muscle spasms or something. She was diagnosed with Juvenile Myoclonic Epilepsy. Megan has been seizure free for 14 months now and has been allowed to get her driving permit. She also is in 10th grade, in band, choir, and soccer (yes, neuro has allowed her play, she just tries to avoid head shots). Meg informs all her teachers at the beginning of the school year of her condition and gives them info on how to handle seizures, our school has this ridiculous privacy policy that prohibits them from giving the teachers info on kids such as illnesses and allergies. Keep asking questions of your dr, and keep notes on what your son is doing prior to a seizure. This is a great place to get info. Tell your son he is not alone, when Meg was diagnosed she seemed to accept it ok, but couple months later got very angry so we got her into counseling and now she is very very pro-educational (has even written an article for the school paper about living with E).
God bless,
Terri
Jhogan928
08-09-2004, 01:03 AM
this past night i had a nightmare about eating outside at 11 pm with the family, and my grandma yell COYOTE and everyone bolted for the house, except me. i fell to the ground in the dream and just layed their. in the dream i couldnt move an inch. i could feel myself shaking real bad, and when i woke up i still felt like i was shaking. this was at 8 am, so i got up immediatly to tell my ma that i think i had a seizure. but i dont know if i di or didnt, i was just thinking it was part of a nightmare reaction. but i still think it might of been a seizure. i dont have epelepsy i just went to the hospital 3 months ago with a grand mal seizure and i havent had any yet. im taking medication for it too.
so does anyone think it was a seizure, or just a reaction from a nightmare??
-john
so does anyone think it was a seizure, or just a reaction from a nightmare??
-john
Karla
08-09-2004, 03:55 AM
I had very infrequent seizures as a child. In my teen years they went away. Then after I gave birth to my twins at age 19 I started having seizures again like crazy. I was having about 30 complex partial seizures a day/night. I was allergic to all the meds on the market at the time. They were always worse and more frequent around my period. All my mris, eegs, etc came back normal. I started having grand mal seizures along with the complex partials around age 25. I then went on febatol and neruontin. It drastically cut down the number of siezures I was having but didn't stop them. Then when I was 27 years old I had a grand mal and was uncountious for over 45min. My Pastor prayed for me in Jesus name and annointed me with oil and prayed for a healing. I have not had a seizure in over 11 years and I have been off all meds the whole time. I am now 38. So I wouldn't worry about if the tests show anything or not other than to make sure there is no brain tumors or anything like that. And they can eventually go away. You learn to adjust your life around them. It is embarrasing to be in the middle of doing or saying something and then check out of life for a min or so to have a seizure and then be tired and not remember anything. My friends were all very cool about it tho. I went to college full time and got a degree working with computers. Can't hurt them or scare them with me having a siezure. My teachers and classmates were aware of the situation and my employers have all known and been very accomadating. There is life outside of epilepsy. I also raised 3 boys during the time when I was having 30 a day. It can be done. Don't ever give up hope.