Sleep seizures

Sandy - posted on 11/01/2012

Leanne ... read my post to Dana. It has a lot of info that should help you. As for diet .... there is no perfect diet to stop seizures. The Ketogenic Diet works for some but it can be difficult if you have more than one child. Especially when they are older and can get in the frig themselves. It is all trial and error with everything dealing with seizures. Drugs, supplements, foods, atmosphere, etc. DO NOT GIVE ANY DIET DRINKS and even GUM!! Most contain aspartame which causes seizures!! One sip of a diet soda and my son would start seizing. The more he drank .. the more he seized!! Good luck.

Sandy Lora

Sandy - posted on 11/01/2012

Dana... Melatonin 3 mg. an hour before bedtime helps them get into a deeper realm of sleep. I give it to my son nightly and he's 13 years old. Stopped seizures while trying to go to sleep, seizures during sleep and seizures upon waking. Trileptal is one of the best seizure drugs that I have given my son for 13 years. Everyone is different so each person can react differently to any drugs or supplements. It's all trial and error. If you don't try ... you will never know .. and it could have been the Miracle you've been searching for!! I would give 1 1200 mg. capsule (or whichever form you choose) every day. It's a supplement that is over the counter. It's for brain and nerve function. It has done wonders for my son!!! He was seizing every day and now it's one seizure or 4-5 eye diaviations every couple of months. MIRACLE for a child who was NOT suppose to live to be 18 months old due to uncontrolled seizures, even after most of his left brain was removed to save his life!! Go to www.youtube.com and search Joey Lora. Miracle Do Happen is a video of my son that will give you inspiration!! Good luck.

Sandy Lora

Leanne - posted on 11/01/2012

what are your childrens diets like and do you think it can have anything to do with what they eat as it seams no medication works and no doctor knows what they are talking about no matter what country you are from????

Dana - posted on 05/04/2012

Alot of these posts were from 2009. Does anyone have any updates?

Dana - posted on 05/04/2012

My doctor( who was the second in 6 months) didn't even know what a seizure monitor was. I question EVERYONE. I fought his trileptyl for 2 years. He is on it now and Im moitoring him extremely closely, but the MINUTE i see any thing wrong hes off. I will go natural remedy methods. I just was told about Melatonin which i will certainly try. There is definantly something to say about mothers instinct! Good job following yours :)

Leticia - posted on 05/02/2012

Exactly well as far as nocturnal szs my 9yo has had them for about 5 yrs nvr knew what they were till grand mal in june2010 befroe that it was just jerks and twitches i thought he had tourettes he takes valproic acid, keppra, topomax and adderall for ADHD and melatoini to help him sleep

ToniAnn - posted on 01/18/2012

Hi ladies, my 7 yr old daughter was diagnosed with Benign Rolandic Epilepsy (seizures while she is sleeping) in November 2011. It was a bitter sweet diagnosis because it took me 7 yrs to get this diagnosis! I had videotaped her having seizures when she was an infant and brought that to a Pediatric Neurologist who told me it wasn't seizures. She refused to do any testing despite a family history of epilepsy. In May 2011 I brought my daughter to the same neurologist because she was complaining of severe headaches. She diagnosed her with migraines and again refused to do an EEG. This school year I insisted to my PCP that she have an EEG because I believed she was having seizures and reminded him of previous events. The EEG was done and came back positive. I took the results to a different Pediatric Neurologist who is now doing a video EEG because the original EEG didn't have the sleep portion completed. She also has ADHD and only takes meds for her ADHD (Intuniv). But she get Melatonin for sleep and Tylenol for headaches every night before bed because she has difficulty sleeping and complains of a headache nightly. The neurologist is waiting to medicate her for the seizures until after the video EEG is complete. He wants to make sure he gives her the right medicine. It's so frustrating though because it seems like her seizures are nightly and she is so tired in the morning. I hate sending her to school the next day!

Sandy - posted on 05/24/2011

Missy ... Please try giving him probably 6 mg. of Melatonin an hour before bedtime. It helps get into a deeper realm of sleep which allows them to get into a deeper sleep and keep the seizures away. Also, try giving him Lecithin which is for brain and nerve function. I give my son 1200 mg. capsule every day and it has helped to calm his seizures and actually stopped them for 7 3/4 months!!! Try, try again. Never stop trying!!!
Sandy Lora

Sandy - posted on 05/24/2011

Michelle ... trying giving him 3 to 6 mg. of Melatonin an hour before bedtime. This puts his brain in a deeper realm and he should sleep better and not allow the seizures to happen. You should also give him Lecithin, which is a vit/min. that is for brain and nerve function. Both of these have helped my son who is now 12 years old. Try anything because you never know what is going to help!!
Sandy Lora

Jenny - posted on 05/24/2011

my 3 year old son has many different seizures he has most in his sleep im askin my dr 4 a sleep eeg

Sandy - posted on 04/14/2011

Night time seizures!!! Try giving your kids 3 mg. Melatonin!!! It turns the brain down and allows them to get into a deeper realm of sleep. This helped my son stop seizing while sleeping and he sleeps all night. Please give it a try!! Trial and error is what we as mom's have to do, otherwise we will never know what will HELP our kids!! Lecithin is a mineral/vitamin and on the shelf. It has helped my son by stopping his seizures for 7 1/2 months. I will try anything and do anything in an effort to stop or control the seizures. Good Luck.
Sandy Lora

Missy - posted on 02/06/2009

I have a 16 year old who has been having nighttime seizures since he was 7. We had taken him to a dozen nerologists and no one could tell us why. Then we moved down to Louisiana and took him to LSU and finally got a diagnosis. He has temporal lobe epilepsy. When he has a seizure he screams through them and alot of times after the convulsions he will scream and cry for about 10-15 minutes. He used to have cluster seizures which means when he had them he would have about 7-8 of them a night then he would wake up the next morning with migrains and couldn't really do a whole lot that day, but as long as he takes his meds. he doesn't get but 1 at a time and that's not very often. The good thing is he is taking trileptal also and they say that is the best medicine for these kind of seizures. Right now my son takes 450 mgs. twice a day but the doc. said that isn't a very high dose and he can go up quite a bit if he has to. What dose is your son taking? I don't know if I helped at all but I do know what your going through.

Kelly - posted on 02/05/2009

Quoting Lana:

Kelly, you are the woman i want and have to talk to you!!!! I read what you said yet it felt like i wrote everything you wrote word for word... you have to keep me updated with all the new things you get to find out.. Somewhere somethings not as it should be... Our mothers should challenge alot of the diagnoses reasonably though. Easy to just give a child a handfull of pills... Sad!

Hi Lana,

We are on day 2 of the EEG. The poor guy was not happy about walking out of the doctors office with his head wrapped with all the wires on it! He cried about it for a while. My heart just broke for him. He is much better today and can't wait until tomorrow when he gets to go back and get it taken off. It takes about 7-10 days to get the results so we shall see if they can find out more. I just hope it gives us a bigger picture of what's happening.

Talk to you soon,

Kelly

Heather - posted on 02/05/2009

My 3 year old son has had seizures ever since I can remember. 98 percent of them are when he is sleeping. He has a ton of seizures for a few months and then we get a couple months when he has very few. When they are bad he has 15 or so a night (they only last 15 -30 seconds usually). He is on Valproic acid and this medication also gives him a stomache ache. Sorry I'm not much help but I thought I'd share.

Heather - posted on 02/05/2009

My 3 year old son has had seizures ever since I can remember. 98 percent of them are when he is sleeping. He has a ton of seizures for a few months and then we get a couple months when he has very few. When they are bad he has 15 or so a night (they only last 15 -30 seconds usually). He is on Valproic acid and this medication also gives him a stomache ache. Sorry I'm not much help but I thought I'd share.

Natalie - posted on 02/05/2009

my daughter is 8 very aggresive with herand only as seizures in her sleep to she takes 600mg of eplim in mornin and same at night she gets very aggresive and as a single parent i get very upset i hope the medication is sorted soon so he does not have these sickness bouts

Christine - posted on 02/04/2009

My son goes in about once a year for about a week hooked up to eegs and video taped the whole time.  It is called a video eeg and they are much more accurated than just a day eeg.  His day eeg was normal it was when we had the video eeg done we found frontal lobe spikes.  He also is on the autism spectrum.  He is on the high functional end.  When I am in the video eeg after two days that start to take away meds and sleep deprive him.  The eeg tech told me I should have this done once a year to make sure they are the same and nothing has changed.  It is interesting to finally find a name for these sleep seizures because I was never told that.  Well good luck everyone keep the great info coming.

Christine - posted on 02/04/2009

My son goes in about once a year for about a week hooked up to eegs and video taped the whole time.  It is called a video eeg and they are much more accurated than just a day eeg.  His day eeg was normal it was when we had the video eeg done we found frontal lobe spikes.  He also is on the autism spectrum.  He is on the high functional end.  When I am in the video eeg after two days that start to take away meds and sleep deprive him.  The eeg tech told me I should have this done once a year to make sure they are the same and nothing has changed.  It is interesting to finally find a name for these sleep seizures because I was never told that.  Well good luck everyone keep the great info coming.

Christine - posted on 02/04/2009

My son goes in about once a year for about a week hooked up to eegs and video taped the whole time.  It is called a video eeg and they are much more accurated than just a day eeg.  His day eeg was normal it was when we had the video eeg done we found frontal lobe spikes.  He also is on the autism spectrum.  He is on the high functional end.  When I am in the video eeg after two days that start to take away meds and sleep deprive him.  The eeg tech told me I should have this done once a year to make sure they are the same and nothing has changed.  It is interesting to finally find a name for these sleep seizures because I was never told that.  Well good luck everyone keep the great info coming.

Violet - posted on 02/04/2009

Quoting Heidi:hey heidi , it appears poor brody  and charlie are the only other two kiddies here with this particular syndrom ....i have been seeing what michelle has been told told in the u.k , and am intrested to know what they have to say about it down under.... i agree  no child should have to go through this , and  i pray to the angels  for strenght to carry us through!

Quoting Michelle:

Quoting Heidi:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hi Michelle, my son has been diagnosed with this condition also.  we are in far north queensland Australia, where are you located?  do you take your little one to the emergency room when she is siezing? how many seizures has she had?  how old is she?  would love to talk with you. Heidi

Hi Heidi.. Really! i have never found anyone with the same as Charlie.. I'm in England.. Wish i was in Australia haha.. I have taken Charlie (8) to the hospital everytime she has had one.. She had her first one at 2 then never had anymore until she was 6 7 and 8.. so ahe has had 4 now.. How old is your son? I would be glad to talk to you about it..

hi michelle, Brodie is now 6 and has had 3 seizures in the last year.  one big one that went to "Status Epilepticus"  where we nilly lost him, he was out of it for hours and we spent the night in Intensive Care, it was in the afternoon after a really active weekend, the second  a minor one when he was with his Dad, mid morning,  and the third was with me when he was waking first thing in the morning, white frothy "vomit" on the pillow case and completely vacant look about him, i gave him 1/2 a millogram of Midazolam in the cheekand he went to sleep while we waited for the Ambo's to arrive (they got lost)  Very aggrovated when he woke up (from the medication - they said it gives them a terrible headache).  the Doc's said me giving him the Midaz was the right thing to do and saved him from going into Status again, which they may never wake up from!  the EEG and cat scan i think it was, were unremarkable, they cant find anything wrong with him.  thankfully he doesnt have to have the medication.  after reading other concerned Mothers reports on here, i feel lucky that my baby doesnt appear to have anywhere near the severity of seizure that other children have.  it also makes me bloody angry... noones baby should have to go through this B.S.  its just not fair.   take care and even though im not very religious, GOD BLESS ALL THE LITTLE CHILDREN.

Violet - posted on 02/04/2009

Quoting Michelle:hey michelle, Abbie turned 8 last thursday  , we are in ireland, i can not get a second openion  here as there is no where else to go , she attends irelands top peds. neurologist in one of the two main Dublin childrens hospitals, she also attends a peds. proffessor in the same hospital   , he basically keeps an eye on her overall well being to ensure nothing else being affected ..... he said he is fascinated by abbie!  they keep a good eye on her  and take her in at least once a year to do telemetory....... which naturally enough when they have them hooked up to the machines for 48 hours they never seizure!!!!!  lol....but they said that is very common....however even though she is not seizuring during these times they said there is seizure activity going on  right throughout the night ......they spoke of spikes and electrical waves ...... abbie has also had grand mal and absence seizures, and very often would sit on a chair or in the car and her body would start jerking severly, although during these times she is alert and awake.... i put this down to side affects of the medication..as the meds go up this would get worse . when the meds are up she would also look vacant with dull eyes and it is like " the water isnt reaching the fountain" so to speak!   she would do things like walk on front  of cars even though she is looking at the car,  the neurologist said these episodes sound like seizures themselves but i think a mother knows there child and i disagree. when we knock the meds. back down we get our happy bright eyed sparkley little girl back!   although i know she is seizuring regularly i feel in striking a balance she still has some quality of life......hopefully little charlie will come good and not have too many more episodes, we have learned its a part of life  and to get on with it , my older son was diagnoised with a cardiac condition 3 years ago which really rocked our world again and poor abbies condition seemed so insignificant  to me then , i feel so guilty about that now ....

Quoting Violet:... I have looked on various websites and have found so many different things its confusing.. Charlie has had 3 eeg's and a brain scan but nothing has been found, they have sent her to various hospitals but have still not found anything.. Have you ever had a second opinion? it sounds like the severity of Abbie's are worse than Charlie's, i hope that doesn't sound harsh... I cannot believe it has gone to that extent, its sounds like a common thing for u guys, its really rare that Charlie does have eppisodes, i'm concerned now that they have said its nothing to worry about.. Sometimes i often wonder if they know what there talking about.. How old is your daughter? Are you in the uk?

Quoting Michelle:that is excately what i mean about all the information being so different, abbie has been left with learning difficulities and the part of the brain her learning problems are has being pin pointed to where the seizure activity is comming from on the eeg, she had  a psychological educational assessment  which consisted of 6 one and a half hour sittings ,  and they were pretty sure the two were connected.  she seizures pretty regularly even on medication for 4 years ,  i just dont know , i wish it was all so much clearer... i couldnt count the number of fits she has had and some were so sever we nearly lost her,  and yet the diagnosis was the ssame as your child!

Quoting Violet:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hey michelle, this is the exact syndrom my little girl suffers from!  i have written an earlier post but i would love to descuss this more with you, her neurologist told me it is a relatively newly discovered syndrom and they are still learning about it. i dont know why they call it begnin  as abbie has been  damaged in the brain in the area the seizures come from!  i would love to compare the information you have been given on it and what i have been told......doctors differ , patients suffer! and when i looked it up online alot of the symptons were similar but the bulk of  the information was compleatly off.....for example the age of onset and duration in years it should go on for, it said the age of onset is usually about 7  but abbie was 2 , and the seizures should only go on for 12 mts. but it has been nearly 7 years now!!! she takes lacmatal twice a day which has calmed things down a bit in the severity of the seizures but she still seizures in clusters every 6 to 8 weeks  which will go on for about 6 weeks.......

Hi, i am glad i found someone else with this problem.. they told me the same, that it is newly discovered, They have told me that it wont damage Charlie's brain in anyway, they also told me that it doesn't matter how long she fits it wont cause any harm, sometimes her fits can last up to an hour. The info i have found online has fitted Charlie's problems perfectly.. As for the age thing they never told me an 'onset' age but did say she would grow out of it by 9 bot some info says it could be 15+.. They wont medicate her because she dont have them regular, she has had 4 fits from the age of 2 until now.. They have given me a drug that i can give her while she is fitting but touch wood i haven't had to use it yet..

 

 

Michelle - posted on 02/04/2009

Oh really.. I have never heard of 'status epilepticus' before, The last one Charlie had was a bad one and lasted over an hour, She also wet herself which i have never experienced before, even diazapan didnt stop her fitting, once she comes out of the fit she just sleeps for hours and hours, they have assured me that it cannot cause damage to her but i am a bit worried now after hearing other peoples stories. Charlie has never had a fit on waking its only in here sleep, she tends to get up and sleep walk then puts herself back into bed then vomits then fits.. She never knows she has had them (which is a good thing) and just wonders why she has woken up in hospital.. I had the same with the eeg and scan, found nothing wrong with her..  I have found this a very 'weird' case of childhood seizures and without the knowledge from the doctors am concerned as to her future..  We are lucky really because some of the stories i have read here must be very upsetting for parents, nobody's child should have to go through things like this...

Heidi - posted on 02/04/2009

Quoting Michelle:

Quoting Heidi:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hi Michelle, my son has been diagnosed with this condition also.  we are in far north queensland Australia, where are you located?  do you take your little one to the emergency room when she is siezing? how many seizures has she had?  how old is she?  would love to talk with you. Heidi

Hi Heidi.. Really! i have never found anyone with the same as Charlie.. I'm in England.. Wish i was in Australia haha.. I have taken Charlie (8) to the hospital everytime she has had one.. She had her first one at 2 then never had anymore until she was 6 7 and 8.. so ahe has had 4 now.. How old is your son? I would be glad to talk to you about it..

hi michelle, Brodie is now 6 and has had 3 seizures in the last year.  one big one that went to "Status Epilepticus"  where we nilly lost him, he was out of it for hours and we spent the night in Intensive Care, it was in the afternoon after a really active weekend, the second  a minor one when he was with his Dad, mid morning,  and the third was with me when he was waking first thing in the morning, white frothy "vomit" on the pillow case and completely vacant look about him, i gave him 1/2 a millogram of Midazolam in the cheekand he went to sleep while we waited for the Ambo's to arrive (they got lost)  Very aggrovated when he woke up (from the medication - they said it gives them a terrible headache).  the Doc's said me giving him the Midaz was the right thing to do and saved him from going into Status again, which they may never wake up from!  the EEG and cat scan i think it was, were unremarkable, they cant find anything wrong with him.  thankfully he doesnt have to have the medication.  after reading other concerned Mothers reports on here, i feel lucky that my baby doesnt appear to have anywhere near the severity of seizure that other children have.  it also makes me bloody angry... noones baby should have to go through this B.S.  its just not fair.   take care and even though im not very religious, GOD BLESS ALL THE LITTLE CHILDREN.

Christine - posted on 02/03/2009

Hi my son is 8 1/2 and he has sleep seizures since 2 1/2 years old. we have tried numerous meds and they seem not to work that well. I he is on diliatin and lamictal right now. I just increase his lamicatl only because I noticed he was asitting up a lot during the night not having full grand mals but small seizures I call them. He as a grand mal about every 4-5 days and he has at least 2 in a row sometimes 4-5 in a row. We tried trileptal when he was 2 and it made him sick to his stomach and he got a rash. I have tried probably close to 15 different meds., I went to Boston and the neurologist said that I should just keep trying meds and when he stops growing they should stop changing. I think he will have them no matter what I do. I try to keep med down to only 2 at a time and only increase when I think he needs it. The neurologist I go to like to keep increasing every 3 months but as far back as I can remember he has on average 6-7 seizures a month no matter how many meds or high they are. I also noticed 2 years ago he was sitting up a lot at night and the neurologist called them seizures but when I had him tested for sleep apnea it was severe so he ended up with his tonsils remove. I also have done the vns (vagus nerve stimulator) I can't say 100% if it works but it is not a drug and there is no side effects. Recently I started swiping him again and his seizures seemed to stop after two grand mals. I have also tried the ketogenic diet and the low-glycemic diet. no realy results from them just fatigue. I am willing to try the ketogenic again if his seizures turn into drop seizures. Well I hope this helps. Please feel free to contact me if you have any questions or just want to chat because I found out chatting with other moms is the best therapy!

Lana - posted on 02/03/2009

Kelly, you are the woman i want and have to talk to you!!!! I read what you said yet it felt like i wrote everything you wrote word for word... you have to keep me updated with all the new things you get to find out.. Somewhere somethings not as it should be... Our mothers should challenge alot of the diagnoses reasonably though. Easy to just give a child a handfull of pills... Sad!

Lana - posted on 02/03/2009

Now i just feel bad as i was really so unaware so many felt like there doc didnt know enough........ but its my baby..

Michelle - posted on 02/03/2009

Quoting Violet:... I have looked on various websites and have found so many different things its confusing.. Charlie has had 3 eeg's and a brain scan but nothing has been found, they have sent her to various hospitals but have still not found anything.. Have you ever had a second opinion? it sounds like the severity of Abbie's are worse than Charlie's, i hope that doesn't sound harsh... I cannot believe it has gone to that extent, its sounds like a common thing for u guys, its really rare that Charlie does have eppisodes, i'm concerned now that they have said its nothing to worry about.. Sometimes i often wonder if they know what there talking about.. How old is your daughter? Are you in the uk?

Quoting Michelle:that is excately what i mean about all the information being so different, abbie has been left with learning difficulities and the part of the brain her learning problems are has being pin pointed to where the seizure activity is comming from on the eeg, she had  a psychological educational assessment  which consisted of 6 one and a half hour sittings ,  and they were pretty sure the two were connected.  she seizures pretty regularly even on medication for 4 years ,  i just dont know , i wish it was all so much clearer... i couldnt count the number of fits she has had and some were so sever we nearly lost her,  and yet the diagnosis was the ssame as your child!

Quoting Violet:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hey michelle, this is the exact syndrom my little girl suffers from!  i have written an earlier post but i would love to descuss this more with you, her neurologist told me it is a relatively newly discovered syndrom and they are still learning about it. i dont know why they call it begnin  as abbie has been  damaged in the brain in the area the seizures come from!  i would love to compare the information you have been given on it and what i have been told......doctors differ , patients suffer! and when i looked it up online alot of the symptons were similar but the bulk of  the information was compleatly off.....for example the age of onset and duration in years it should go on for, it said the age of onset is usually about 7  but abbie was 2 , and the seizures should only go on for 12 mts. but it has been nearly 7 years now!!! she takes lacmatal twice a day which has calmed things down a bit in the severity of the seizures but she still seizures in clusters every 6 to 8 weeks  which will go on for about 6 weeks.......

Hi, i am glad i found someone else with this problem.. they told me the same, that it is newly discovered, They have told me that it wont damage Charlie's brain in anyway, they also told me that it doesn't matter how long she fits it wont cause any harm, sometimes her fits can last up to an hour. The info i have found online has fitted Charlie's problems perfectly.. As for the age thing they never told me an 'onset' age but did say she would grow out of it by 9 bot some info says it could be 15+.. They wont medicate her because she dont have them regular, she has had 4 fits from the age of 2 until now.. They have given me a drug that i can give her while she is fitting but touch wood i haven't had to use it yet..

 

Violet - posted on 02/02/2009

Quoting Michelle:that is excately what i mean about all the information being so different, abbie has been left with learning difficulities and the part of the brain her learning problems are has being pin pointed to where the seizure activity is comming from on the eeg, she had  a psychological educational assessment  which consisted of 6 one and a half hour sittings ,  and they were pretty sure the two were connected.  she seizures pretty regularly even on medication for 4 years ,  i just dont know , i wish it was all so much clearer... i couldnt count the number of fits she has had and some were so sever we nearly lost her,  and yet the diagnosis was the ssame as your child!

Quoting Violet:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hey michelle, this is the exact syndrom my little girl suffers from!  i have written an earlier post but i would love to descuss this more with you, her neurologist told me it is a relatively newly discovered syndrom and they are still learning about it. i dont know why they call it begnin  as abbie has been  damaged in the brain in the area the seizures come from!  i would love to compare the information you have been given on it and what i have been told......doctors differ , patients suffer! and when i looked it up online alot of the symptons were similar but the bulk of  the information was compleatly off.....for example the age of onset and duration in years it should go on for, it said the age of onset is usually about 7  but abbie was 2 , and the seizures should only go on for 12 mts. but it has been nearly 7 years now!!! she takes lacmatal twice a day which has calmed things down a bit in the severity of the seizures but she still seizures in clusters every 6 to 8 weeks  which will go on for about 6 weeks.......

Hi, i am glad i found someone else with this problem.. they told me the same, that it is newly discovered, They have told me that it wont damage Charlie's brain in anyway, they also told me that it doesn't matter how long she fits it wont cause any harm, sometimes her fits can last up to an hour. The info i have found online has fitted Charlie's problems perfectly.. As for the age thing they never told me an 'onset' age but did say she would grow out of it by 9 bot some info says it could be 15+.. They wont medicate her because she dont have them regular, she has had 4 fits from the age of 2 until now.. They have given me a drug that i can give her while she is fitting but touch wood i haven't had to use it yet..

Michelle - posted on 02/02/2009

Quoting Heidi:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hi Michelle, my son has been diagnosed with this condition also.  we are in far north queensland Australia, where are you located?  do you take your little one to the emergency room when she is siezing? how many seizures has she had?  how old is she?  would love to talk with you. Heidi

Hi Heidi.. Really! i have never found anyone with the same as Charlie.. I'm in England.. Wish i was in Australia haha.. I have taken Charlie (8) to the hospital everytime she has had one.. She had her first one at 2 then never had anymore until she was 6 7 and 8.. so ahe has had 4 now.. How old is your son? I would be glad to talk to you about it..

Michelle - posted on 02/02/2009

Quoting Violet:

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hey michelle, this is the exact syndrom my little girl suffers from!  i have written an earlier post but i would love to descuss this more with you, her neurologist told me it is a relatively newly discovered syndrom and they are still learning about it. i dont know why they call it begnin  as abbie has been  damaged in the brain in the area the seizures come from!  i would love to compare the information you have been given on it and what i have been told......doctors differ , patients suffer! and when i looked it up online alot of the symptons were similar but the bulk of  the information was compleatly off.....for example the age of onset and duration in years it should go on for, it said the age of onset is usually about 7  but abbie was 2 , and the seizures should only go on for 12 mts. but it has been nearly 7 years now!!! she takes lacmatal twice a day which has calmed things down a bit in the severity of the seizures but she still seizures in clusters every 6 to 8 weeks  which will go on for about 6 weeks.......

Hi, i am glad i found someone else with this problem.. they told me the same, that it is newly discovered, They have told me that it wont damage Charlie's brain in anyway, they also told me that it doesn't matter how long she fits it wont cause any harm, sometimes her fits can last up to an hour. The info i have found online has fitted Charlie's problems perfectly.. As for the age thing they never told me an 'onset' age but did say she would grow out of it by 9 bot some info says it could be 15+.. They wont medicate her because she dont have them regular, she has had 4 fits from the age of 2 until now.. They have given me a drug that i can give her while she is fitting but touch wood i haven't had to use it yet..

Heidi - posted on 02/01/2009

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hi Michelle, my son has been diagnosed with this condition also.  we are in far north queensland Australia, where are you located?  do you take your little one to the emergency room when she is siezing? how many seizures has she had?  how old is she?  would love to talk with you. Heidi

Violet - posted on 01/31/2009

Quoting Kerry:

My son Alfie-Jay was diagnosed in April 08 and  also suffers nocturnal szrs. We found getting a baby monitor with CCTV attached help with our piece of mind. Alfie-Jay is on epilim twice a day. There are also special pillows you can get, so if they have a szr whilst sleeping, they can't suffocate. I just ordered a card from the internet, and it really helps when the kids are out overnight.Its credit card size, you can put any info you like on them, and they take it everywhere with them.I hope things settle down soon for you.x

kerry , i would love to find out more about this card you have ordered, it sounds like a great idea, what is it called and where on line can you find it?? thanks!

Violet - posted on 01/31/2009

Quoting Michelle:

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

hey michelle, this is the exact syndrom my little girl suffers from!  i have written an earlier post but i would love to descuss this more with you, her neurologist told me it is a relatively newly discovered syndrom and they are still learning about it. i dont know why they call it begnin  as abbie has been  damaged in the brain in the area the seizures come from!  i would love to compare the information you have been given on it and what i have been told......doctors differ , patients suffer! and when i looked it up online alot of the symptons were similar but the bulk of  the information was compleatly off.....for example the age of onset and duration in years it should go on for, it said the age of onset is usually about 7  but abbie was 2 , and the seizures should only go on for 12 mts. but it has been nearly 7 years now!!! she takes lacmatal twice a day which has calmed things down a bit in the severity of the seizures but she still seizures in clusters every 6 to 8 weeks  which will go on for about 6 weeks.......

Kelly - posted on 01/30/2009

Quoting Peggy:

They say this is a pediatric thing, and that she will most likely grow out of it.  Anyone else have any experience with this?  Even if not, it is comforting to read and discuss this with anyone who knows where we're coming from ! :)

Just an addition: Peggy- my daughter also has benign rolandic epilepsy (she also has benign occipital epilepsy) with most seizures occuring in the few hours around when she is going to sleep or waking up. We have a pediatric neurologist who is used to explaining things to parents with questions. She explained to me that the frequency and intensity of seizures with benign rolandic epilepsy (BRE) should peak around age 9 and that by age 14 over 95% of patients with  BRE should stop having any seizures.  She explained that since epilepsy is a disorder centering around messages being sent& recieved erroneously in the brain and that when the brain is changing from a waking to sleeping state (or vice-versa) is a common time for the messages to get mixed up by the brain.   

I would suggest that you write out a list of questions to take to your next appointment.  You can't rely on your memory to ask all of your questions if your brain is working overtime trying to process the answers that your doctor gives to your first question or two.  My question list has really helped me make the most of my time at Brianna's neurologist appointments.

 

Michelle - posted on 01/29/2009

My daughter Charlie suffers from sleep seizures, Panayiotopolas syndrome/begnin childhood seizures.. she often complains of headaches before bed and sometimes has a fit during deep sleep, she vomits and then starts to shake all over, sometimes no shaking has occured but her body looks like she has had a stroke as one side of her body is limp and lifeless causing her face to droop one side. She is unresponsive to.. they can last for up to an hour and she has no recolection of them as she sleeps for england after them.. she has had eeg's and a brain scan which show no abnormalities so the docs are not concerned.. they have perscibed her with buccal medazolam which is dropped into her mouth while she is fitting.. I was very concerned at night and sometimes cant sleep if she tells me she has a bad head, but usually the vomiting wakes me up.. Does anyone else experience sleep walking with night time fits?

Darci - posted on 01/21/2009

That is what started us off with the seizures with my daughter she had them going to sleep and waking up and we thought they were night frights because they are not the normal shaking seizures. I have no advice other than hugs and I am so thankful for this board. We are on the generic lamictal but wish we could take the name brand because it is so much better with no side effects it is so dang expensive though.

Kerry - posted on 01/20/2009

My son Alfie-Jay was diagnosed in April 08 and  also suffers nocturnal szrs. We found getting a baby monitor with CCTV attached help with our piece of mind. Alfie-Jay is on epilim twice a day. There are also special pillows you can get, so if they have a szr whilst sleeping, they can't suffocate. I just ordered a card from the internet, and it really helps when the kids are out overnight.Its credit card size, you can put any info you like on them, and they take it everywhere with them.I hope things settle down soon for you.x

Karen - posted on 01/20/2009

My son was diagnosed with epilepsy at 19 years old.  He remembers having spells as he called them within the couple years before that.  His happen when he is just falling to sleep and he says that he tries to talk and move but nothing is happening.  When they've been witnessed all you can tell is that he is a bit restless and anxious seeming.  He is not taking any meds and I think that is related to being a teenager that was told he has this lifelong condition etc, etc.  It seems he suffers them if he doesn't get regular sleep, so knowing that helps him.  He has always been one to fall instantly asleep and act out of it if you tried to wake him within the first couple hours.  I'm glad I found this group as I've never known where to find information.  I worry that he doesn't take the medicine.  It will affect his life with things like working long days, he should never do shift work most especially overnight and if he does go to a party, drinks a bit much and stays up much past midnight then he sleeps all the next day.  He doesn't do this often so I think he knows his limits, but it must be hard.  He is 22 now.  His brain scan showed constant mini seizures if I remember what the Doc said originally.  Hope to learn more from anyone in his situation.  It does seem hereditary and his father was diagnosed with epilepsy at age 40 and it also comes on when he is not getting regular sleep. 

Natalie - posted on 01/20/2009

Hi my name is natalie - i have a daughter who is now a healthy 5 1/2 yr old. We found out ebony had epilepsy when she was 2 yrs old, out of the blue one day she started having seizures ......... the day she started having them she was admitted to hospital and spent a week there hooked up to all sorts of equipement. Her 1st day in hospital she had 14 seizures, the second day she had 18 ...... the most she had in one day at hospital was 23 seizures, i seriously thought my baby was going to die!  The doctors for starters thought she had Meningitis, she then had a lumber puncher on her spine but we discovered (thank the lord) that it wasnt that. Lucky ebony only had seizures when she was sleeping so after a week the doctors allowed her to come home. The doctors put her on liquid epilim (which is very strong in taste and a dark red colour) i tried in vain to get her to take it but because of the taste she knew it was everything i tried to mix it with. I ended up returning to the doctors to see if they would change her medication, they wanted to do a 48hr eeg 1st before they would allow her to switch to tablets. The EEG confirmed Ebony infact had epilepsy and the doctors then changed her on to tablet form medication - this was alot easier as i could crush the tablets and mix it with yogurt etc. She was having 4 tablets twice daily. I hated her being on medication, it had many side affects, sickness, sleepy, bad temper etc .......... after about a yr of her being on medication i decided to talk to the main doctor at the hospital to find out if they could drop her dose as i felt the medication was actually doing her more harm that good, he refused and said she needed to stay on that does. as a parent everyone knows their child better than anyone else, ebony from the moment she started on medication was stuck in a time warp, her brain hadnt moved on in a whole year .......... she couldnt talk properly, her writing, reading, spelling hadn't improved. She was beginning to do strange things like falling off her chair while eating her dinner, walking into walks and just suddenly falling over while walking - it worried me to say the least! At 4 i once again tried to get ebonys dose dropped but again the doctor refused, that was the last time i went to the hospital as i did actually fall out with the doctor at the hospital that day and he told me he would remove my daughter from his list (which he did) if i didnt do as he thought was best. I spoke to my family GP and from that day on everything regarding my daughter goes through him and not the city hospital. Ebony a yr later was taken off epilm completely without consent of the  hospital, as her mother i felt i had to do what was best for her and i felt she had to be given a chance in life without being drugged up 24 hours a day. Ebony only fits once in a blue moon now, she is doing so well at school, her reading writing and spelling is wonderful for saying the bad start she had in life.

Whatever the case maybe do not give up hope, always question the doctors, yes i know they know their jobs but you as a parent knows your child better than anyone.

Take care all xx

Peggy - posted on 01/19/2009

We only have done the sleep deprived EEG, where I let her sleep 4 hours max over night and then drive in to the office in the AM and they hook her up while she falls asleep.  I would be interested in one of those 48 hr ones just to rule out anything going on during her waking hours!  We are going in to the neuro in a few weeks so I may ask about that.

Peggy - posted on 01/19/2009

We only have done the sleep deprived EEG, where I let her sleep 4 hours max over night and then drive in to the office in the AM and they hook her up while she falls asleep.  I would be interested in one of those 48 hr ones just to rule out anything going on during her waking hours!  We are going in to the neuro in a few weeks so I may ask about that.

Peggy - posted on 01/19/2009

We only have done the sleep deprived EEG, where I let her sleep 4 hours max over night and then drive in to the office in the AM and they hook her up while she falls asleep.  I would be interested in one of those 48 hr ones just to rule out anything going on during her waking hours!  We are going in to the neuro in a few weeks so I may ask about that.

Kelly - posted on 01/19/2009

Thanks for posting Peggy! Not sure if you saw my earlier post about my son but he has been on Keppra almost a year now and I am wondering if it is the best choice. He also gets 10+ hours a sleep a night and wakes with bags under his eyes and just looks exhausted. It was a godsend when he first started. He was like a new kid and I really think at first it was working. He was getting sleep finally for the first time in a LONG time. We are getting ready to do a 48 hour EEG so hopefully we will find out what else may be happening. It is just so frustrating. He tries SO hard at school and still it is just a struggle for him which is totally understandable if he is not getting the right kind of sleep. Have your neurologists said its a "pediatric" thing? Do they have any clue why? God I would just love to know why?!?!?!?!?!? Thanks everyone for your posts and for listening and understanding. I just can't seem to talk to my friends about this a lot as they just don't understand.

Peggy - posted on 01/19/2009

Hi!  My 7yr old daughter has these "sleep seizures" and her condition is being called Benign Rolandic Epilepsy.  She had no symptoms that we were aware of until an absence seizure one evening in 2005.  It lasted over 30min so we were kept at Rainbow Babies and Childrens Hosp. in Cleveland for several days but no one could put theor finger on anything at that time.  We saw nothing until over a year later we noticed some instances of sleep apnea.  When tested (a sleep study thinking she needed her adenoids removed) we discovered it was centrally caused...further EEG's revealed the seizures while she was sleeping.  You see nothing if you were to watch her and absolutely no sign of seizures at any other time, but it is clearly happening on the EEG's.  She is exhausted in the afternoons at school, so while she sleeps almost 10hrs a night, it isn't a restful sleep.

Dr's said we could choose to not medicate her, but her schoolwork was going to suffer in the afternoons so we went ahead with meds.

So we started with Keppra.  It was fantastic but after about a year, we requested trying another med becasue the major side effect for her was anxiety.  We dealt with it for a while but 7yr old girls have ENOUGH anxiety as it is!!!  It was getting pretty bad at our house so we have recently switched to Zirontin (sp?).  It is going well so far...still ramping up to the desired dose.

They say this is a pediatric thing, and that she will most likely grow out of it.  Anyone else have any experience with this?  Even if not, it is comforting to read and discuss this with anyone who knows where we're coming from ! :)

Heidi - posted on 01/18/2009

hi Lyndal, can you please tell me, are you conscious during these seisures, are you aware of what is going on around you?

Lyndal - posted on 01/18/2009

hi michelle my name is lyndal and i suffer from the same seizures mainly happening at night i am on eplim and tegretol. they have been happening since i was 18 and now 37 yes they r a pain in the butt

Farrah - posted on 01/17/2009

Hi. My daughter has had epilepsy since she was a couple of months old, she is nine now. She has gone through many types of seizures but since she was about five she has had sleep seizures along with vomiting. She has been on carbitrol for a while now and it helped immensely. At first the carbitrol was just controlling the seizures and she was still having vomiting episodes, but we had the dosage raised and she hasn't vomited in quite a while. We tried keppra and it was horrible! It would be very easy for someone to think your child has adhd or something like that because of the behavior problems this medicine causes, we actually had to keep our daughter out of school for a week or so because she was very aggressive (biting, kicking) and was also peeing on the floor. Before that she was on lamictal and trileptal(together), but she outgrew that medication. Remember that as your child grows, dosages may need to be raised or medication changed altogether because your child grows out of them, this could happen every few years. And all children are different, what works for one may not work for another. My daughter also was considered "developmentally delayed" in school. I see so many children with epilepsy with this issue and nobody really knows if it's because of the epilepsy or the medication. She also has selective-mutism. Just remember you know your child best and schools and doctors can't make you do anything you are not comfortable with, YOU are the decision maker!

Kelly - posted on 01/15/2009

Hi Laura, that is interesting to hear about the absence seizures. He was diagnosed with ADHD but sometimes I have wondered if these seizures are going on instead. He definitely has symptons of ADHD but he's also a boy! I am kinda glad we are doing this 48 hour EEG as it will definitely catch if (hopefully) if that's going on. What's baffling me too is he was reading like a champ at school this year and right after Christmas break, he seems to be having trouble again. Can't figure it out. I don't think they can really diagnose dyslexia until they are like 3rd grade??? My son is in kindergarten...we actually held him back again.

Laura - posted on 01/15/2009

My son has seizures at night as well. Although he has had a seizure disorder since he was a baby that appeared to have gone away when he was 4 years old and just came back now that he hit puberty. He was just started on Trileptal yesterday. He also has hem during the day, but they are more like abscence seizures. I am not much help as the medication is all new to me. I am eager to see waht everyone else has to say.

My son is dyslexic and another girl from my carpool is also dyslexic with the same seizure type.  I found this interesting and wonder if they are related. The school they go to specializes in teaching kids with learning differences and the nurse said a number ofthe kids have right temporal lobe seizures.

Cassie - posted on 01/14/2009

My daughter has been hang seizures since she was 19 months old and is now 11 years old. Most of her seizures are in the early mornings. It is very scary since she sleeps in her own room and it is cause for alarm that I may not hear her. We bought a dog who is very sensitive to her problems so if we don't hear her, he comes and sits on me until I wake up. Nothing like a 100 pound dog waking you up in the middle of the night. They have never been able to tell us why this is going on. We have had the sleep EKGs, CAT scans and other tests. She does have seizures at other times such as stressfull times or exciting times but mostly around 4 a.m. She always wakes cranky from her seizures no matter when she has them. Just make sure to get a montiering system if you don't have one so you can hear him.