Seizures only during sleep

Rob. - posted on 07/29/2009 ( 28 moms have responded )

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My son has suffered seizures during sleep all his life, he is 13, he has never had a seizure when he has been awake, I am just wondering how common this is and is it assosiated with other impairements. Doctors say he not able to be classified as autistic even though they admit he has autistic characteristics , school system ascertained him highest level intellectually impaired. Cant get him to complete IQ or hearing tests. i have suspected some sensory processing disorder symptoms. We cant get much government assistance for him as he doesnt have a diagnosis. We have had a long road to travel during his life. We have tried many different types of medication all of which i feel have side effects that cause just as much damage if not more than the seizures. As he has got older the seizures have slowed a little. Tests show he still has seizure activity even though he hasnt had a proper seizure for almost 2 years. when he was a baby doctors thought he suffered febrile convusions but now say spike waves during slow sleep such as falling asleep or waking from sleep. Does anyone else have this with their kids. our Peadiatrician says in his whole 30 year doctor career he has never seen another child like our boy and he has no explanation of how or why he is the way he is he told us years ago that it is just one of those freak of nature things.....

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LYNN - posted on 04/15/2012

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My son had Rolandic Epilepsy (as told by the docs) and first had them when he is 9 yrs old in 2009. Second episode was in 2011 (about a year after the first one) and recently in 2012 he had 3 episodes of seizures of which all occurs during his sleeps. He is not under any medication as the doctors told me that the epilepsy drugs is very strong and could caused other medical problems to him.

My son is a straight A student who loves computes games, PS and he could spend hours on the computers playing games. Doctors advised us to stop his computer games and ensure that he sleeps early at nite. I have currently stopped his computer's addiction and ensure him to sleep early at nite and trying to see if there is any difference in his conditions...hopefully.

[deleted account]

My son Steven is now 20 but had his first grand mal about 4 years ago during a brief nap. His activity is when he is leaving REM sleep and beginning to awaken, which seems to be common for this type of epilepsy. Diane Carlsen hit it on the nose when she discussed the REM sleep pattern. His seizures are always grand mal and always severe.
Steven is on Depakote, which has completely stopped them until recently and has had to have a dosage increase this year. Aside from the seizures off of his meds, you would never know there was any medical issues. After his seizures, we took him to the ER to have his dapakane levels checked to ensure his levels are at 70 or above, this is really the only defense we have.
Here are some things which may help others which seem to be consistent with Steven:
He always has a headache and stomach upset before a seizure...sometimes a full day in advance, but so far this has been 100% of the time. He's always had some headaches and stomach issues growing up which were minor, but never seizures, so it's hard to tell if they were ever related. Also, he twitches in his sleep when his levels go down, sort of like a dog having a dream, which has been an indicator for us as well. He's an adult now so I don't control his medication or his actions, but I do watch him closely enough to see the signs. He lives at home still, which helps. He's now aware of his pre-seizure signs and makes sure he's medicated properly.
I hope this helps for those who have teenagers or for signs you didn't notice before.
Sabrina

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Roliagrawal - posted on 10/12/2012

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Hi there!! U r not alone ! My daughter Harshita(13)is also having seizures during sleep from last 12 years! Currently she is taking valparin, lamatec,keppra,zone gran, Lacoset! Doctors r not able to tell why??? They r just trying or can say adding new medicines every time! She can now walk with little support but speech is not there !! I am from a small city Varanasi (UP) ( INDIA)where we don't have much facilities !! I am really worried that being on such high medicines why her seizures r continuing !! God please help her. !!

Roliagrawal - posted on 10/12/2012

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Hi there!! U r not alone ! My daughter Harshita(13)is also having seizures during sleep from last 12 years! Currently she is taking valparin, lamatec,keppra,zone gran, Lacoset! Doctors r not able to tell why??? They r just trying or can say adding new medicines every time! She can now walk with little support but speech is not there !! I am from a small city Varanasi (UP) ( INDIA)where we don't have much facilities !! I am really worried that being on such high medicines why her seizures r continuing !! God please help her. !!

Roliagrawal - posted on 10/12/2012

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Hi there!! U r not alone ! My daughter Harshita(13)is also having seizures during sleep from last 12 years! Currently she is taking valparin, lamatec,keppra,zone gran, Lacoset! Doctors r not able to tell why??? They r just trying or can say adding new medicines every time! She can now walk with little support but speech is not there !! I am from a small city Varanasi (UP) ( INDIA)where we don't have much facilities !! I am really worried that being on such high medicines why her seizures r continuing !! God please help her. !!

Lula - posted on 10/04/2012

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My daughter started having siezers at the age 14 , only when asleep but she also has night terrors in between siezers and it all is scaring me to death. She has ben in hospital couple times and had the 3 day eeg at home, has anyone sen this before they say its caused from stress. any answers emal me facebook @ luladustinparsons. I really need answers

Ranita - posted on 08/19/2012

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Hi my name Adam I know this site is for moms I do apologize I am 28 My wife Ranita Is there when I have my seizures they are weird to me I actually am conscience when it happen and can sometimes control them and snap outta it but it allways happens when I am kind of sleeping I dont know If i am asleep or not but it has been getting worse lately. I dont really know if this is serious or not but iI can have like 4-5 in bout 2 hours I think(not sure) It seems common it only happens in my head but just a few minutes I jerked in my shoulders scared her half to death I really dont want her to be worried. I just dont think i have grown outta this very well or do you think this is something that people tend to forget about becasue of there hitting adolescence and they move out and are on there own so they loose track of this in later years

Lynn - posted on 06/06/2012

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Hi everyone,

I might take Lesty's suggestion and take my son for an eye-sight check coz thou the doctors diagnose him but they were puzzled of his conditions since there were no history of epilepsy in our family and my sons has no developmental or learning issues. My son has been in good condition since his last seizures and i've been controlling his habits, his sleeps. Thou he is ok but i still have my worries. I have lost an amount of sleeps since his last seizures and even now i keep on waking up at nites whenever he stirs in his sleeps. I also really wish that he will grow out of his seizures when he reach puberty. I have heard cases of children grows out of it when they reach puberty here in my country...btw i'm from Malaysia.

Jarrett Neil - posted on 06/06/2012

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Hi,



I'd like to suggest a solution that I'm very hopeful about! We have a dog who is 6 months old and has been having terrible grand mal seizures every time he starts to go to sleep. Its been going on now for three days this time almost every hour as he falls asleep about an hour after each seizure.



My wife and I could not afford $5,000 to get him the treatment he deserves and we were afraid we'd have to put him down very soon as this is hell on him as you can imagine. Like many others he stopped knowing who we were, could not eat, drink walk nor relieve himself properly. He was like a vegitable.



My wife however, the smarter of us two, had remembered some of her meds stating they also work on dogs so she started researching and found out that in the Emergency rooms they give seizure victims VALIUM to stop the seizures......she knew VALIUM was a derivitive of Valarian root, a natural plant which you can buy at the nursery and grow at home! She ordered it yesterday on Amazon, 530mg capsules, 100 for less than $5!



Amazingly they arrived today and have miraculously stopped his seizures completely so far!!!!



We first gave him one pill and all his twitching and muscle spasms went away but he did not fall asleep (the definitive test we felt before we could say it works) so an hour and a half later we gave him his second and he has now slept, woken from sleep and still, no shakes! IT IS A TRUE NATURAL MIRACLE DRUG THAT GOD HAS GIVEN US! Why take all those poisons pharmaceutical companies make when we have nature?



Here is what we purchased http://www.amazon.com/Natures-Way-Valeri...



ALSO, JUST SO YOU KNOW SEIZURES IN DOGS ARE THE SAME AS IN HUMANS SO THIS SHOULD WORK, I PRAY IT DOES!



PLEASE RESPOND BACK AND LET EVERYONE KNOW IF IT WORKS FOR YOUR LOVED ONE!



Warmest regards to you all,

Jarrett Neil Ridlinghafer

jarrett,ridlinghafer@gmail.com



PS - THEE ARE NO SIDE AFFECTS FROM THIS NATURAL ROOT EXTRACT. Even Valium is a very safe drug and you can take either without worry of any bad side affects. If you look into the history of medicine they have been using this plant for stopping seizures, helping with headaches, killing pain and many other things since the days of ancient Greece! I guarantee that NO DOCTOR would ever prescribe it though as they do not make any money from prescribing natural remedies that WORK!

Patricia - posted on 09/09/2009

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Wow i can totally relate to u. My son started at 3 months old but also does them awake. I have no clue what to say. I cant travel with him on the bus he freaks out. That is new though. I sleep with him cause i am afriad of him never waken up or something. My son has sensory issuse and we are waiting for toronto east general hospital for him to be tested. Where u from?

Trina - posted on 08/28/2009

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I can understand your frustration. My son has grand mal seizures asleep--at anytime of the day. He had his first seizure at 14. He has had grand mal seizures twice when he was awake.He has had 3 seizures when he just stares into space and his eyes move from side to side really fast and with these he was fully awake. The dr can't tell me why he has the different seizures. He also has an abnormalty in the lower left lobe of his brain. Since the change in the seizure, i can't get the dr to to refer him to a neurologist to check and see if there has been any changes in his brain. Pray, Pray and Pray for God to direct the thinking of the doctors and everyone involved to solve this problem. That is the only way I could get some peace with this situation. My son is now 17 and takes 800 mg dilantin aday and still has grand mal seizures in his sleep. I constantly pray for an answer to this problem. I refuse to believe that my son is suffering from one of those freak of nature things. There is an answer and I pray you don't give up. The Epilepsy foundation is a good place to start doing some research. That is where I gained information on this disease and the resources available to people with epilepsy. God bless you and your family.

[deleted account]

re: "Posted by Amanda Hol (July 31, 4:17 pm)
My son was diagonosed with Benign Rolandic Epilepsy, which is basically seisures at night. The seizures he did have were due to breath holding which were unrelated to the Epilepsy he has been diagnosed with. We haven't seen anythign and he is only 3 and so we are not sure if he is having them and then not able to explain what they are. This type of epilepsy they do grow out of by puberty. Was this ever mentioned?"

Steven's neurologist stated this is common for teenagers when they HIT puberty, which appears to be in direct contrast...I find it interesting that there is so much conflicting information, this tells me they don't know enough. I pray they grow out of it every day :)

Colleen - posted on 08/05/2009

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I am wondering what the statistics are on kids growing out of the seizures. I know they told us that Jacob would probley grow out of them but it has been 8 years now. But I will still pray that he does!!!! It would be nice to know how this happened? what caused him to start having seizures ect. But the doctors said we probley will never know. Jacob had been on the same meds since he was 3 but just kept increading the dose as he grows so that he doesnt have seizures, now i noticed that he was having a few here and there when he sleeps and i even video taped them for the doctor to look at. They are going to switch his meds to keppra now. We just have to be thankful that their are meds to control the seizures and that he doesnt have them day and night. The only thing that we have ever noticed while he was on meds is that he gets tired other then that he has not had any bad side effects.

Lindsey - posted on 08/05/2009

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My oldest son was diagnosed with Benign Rolandic Epilepsy when he was 5 (3 years ago). He was put on Topamax from the beginning, and has been pretty controlled with a few break through seizures a few times a year. He has Gran Mal seizures only that I have seen and usually during wake up time. The seizures that we have seen have been long and unable to stop without calling 911 (15-20mins, which drops his blood sugar to almost nothing and causes more seizures). It is very heartbreaking to watch your young child go through this, but we just keep praying to God that he will grow out of it like his dr. predicts. He is having another EEG done on the 10th so we will see how he is really doing in a few days!

Andrea Denise - posted on 08/04/2009

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Hi. My son had seizures only in his sleep as well. You are not alone. He was put on Keppra and his seizures have now stopped completely unless, he has very mild ones that only an EEG would detect. Just pray that God will protect him/her.

Christina - posted on 08/03/2009

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There are a couple seizure disorders that happen during the period of falling asleep or waking from deep sleep. My stepson has seizures when waking from deep sleep. He is treated with medication and does well. He's never had any of the other developmental disorder you spoke of though. You might want to start your search by looking up Beign Reddericks disorder i believe it is called.

Annette - posted on 08/03/2009

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Oh and if you can get them to diagnose Generalized Seizure Disorder, you may be able to push your school into a Autism Diagnosis as well...30% of Autistic children have a GSD diagnosis (or so I have read) and once you get that, even if it is right or wrong, you can get more government assistance.

Annette - posted on 08/03/2009

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Our boy has had exclusively night time events for the last two years. His daytime events were usually all within an hour of waking, but now, they are nocturnal only. BRE was ruled on on EEG. I explain to people that it's like having a 60 pound infant. His seizures wake us up every few hours and the sleep deprivation is amazing. He has had stretches of no seizures with each medication dosage increase but after 13 days...back to multiples a night.



He started Lamictal and Keppra and now his abnormal activity is mostly frontal lobes and not the 'all over generalized' we were seeing before. There is a chance he has a frontal lobe deficit or defect but his MRI is normal. The frontal lobes do not fully develop until the early 20's so as time progresses he may get better. Right now, he has NO speech, NO ick factor (just wiped his feces off the walls, his mouth, my pillows etc...) and yet, is very cuddly and people oriented. I have no doubt that he will test on the Autism Spectrum, if he could respond to questions at all. We are doing EEG's every few months, and an MRI once a year. We up his meds as we need and hope for the best, aside from that, we let time help us by helping him grow and hopefully, develop. I talk to his Doctor or the PA every few weeks and give her an update. I research and ask questions, if I don't understand the answer I make them dumb it down. I rarely leave confused or uninformed, but often I leave sad.



The schools are gonna really hate me. Good luck with your son and I am sending oodles of support to all of you! group hug :)

Anna-marie - posted on 08/01/2009

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my daughter had fits or this is what they thought at frist after she had fallen down the stairs after her haveing for fits they did scans and found she had a carvanoma in the brain three days later she went to and had surgey at frenchhay bristol the surgen said this is very rare in young children and she had this from when i was 6 weeks pregent i worried that it was my fault . although it two years on and no signs of growing back i have relized that she was choicen as not all children can cope with things like this

Colleen - posted on 08/01/2009

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My son Jacob has been having seizures since he was 3, and only during sleep. He is now a month away from his 11 th birthday. Through the years medicaiton takes care of the seizures for awhile then as he grows and shows signs of seizures again they up his meds. He has complex partial seizures coming from the front temporal lobe. Every now and then I will sleep with him to see if he is having any seizures and when i notice that he is then they give him a higher dose of his medication. Its really hard seeing your child have seizures. They first told us to that is was caused by a fever, then was told he will probley just grow out of them, but the older he gets the chances are less likely.

Does anyone else's child have similiar to my sons seizures? If so I would like to compare notes, on what kinds of meds and what their seizures look like.

Thanks.

Lesty - posted on 08/01/2009

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How is his eye sight? Yes, I have a son with a lot of the same issues as yours. His doctor also said he hasn't seen anything like it. After a several yr chase, and more doctor appointments than one should have in a lifetime, and a couple of mis-diagnosis, they finally figured out the correct diagnosis. Take him to get his vision checked immediately, and be sure they dilate his eyes to look inside. If they find anything suspicious, please contact me.

Bobbi - posted on 07/31/2009

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I have a 9yr old daughter that was diagnosed with Benign Rolandic Epilepsy, when she was 6 yrs old and has been on meds since so she don't have them as much anymore but if she gets not enough sleep then she has a siezure and so we see them but they are not always while she is sleeping either.

Diane - posted on 07/31/2009

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Hi, My son is almost 15, he has had seizures since he was 6, they have always been petetite maul seizures until Feb of this year, and that is when he had his first Grand Maul seizure and man was it ever scary for us. most of his are also in his sleep, however his petetite maul one's are also whil he is awake, the grands maul one's wake me up, i can hear him jurking from the other room, his is a big boy 250 lbs and 5"10", i have had to call 911 all 3 times. has anyone talked to their dr. about the possibility of Brain Surgery. we just got back this week from Fort Worth where our dr. is at, and we are checking out to see if my son is a canidate for surgery!!!, any advice is appreciated. Thank you Diane

Amanda - posted on 07/31/2009

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My son was diagonosed with Benign Rolandic Epilepsy, which is basically seisures at night. The seizures he did have were due to breath holding which were unrelated to the Epilepsy he has been diagnosed with. We haven't seen anythign and he is only 3 and so we are not sure if he is having them and then not able to explain what they are. This type of epilepsy they do grow out of by puberty. Was this ever mentioned?

Dianne - posted on 07/30/2009

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i have no children who are epileptic but i have 3 sisters and a brother who are. my brother also only takes seizures of a night time. if possible try and keep a written record of when the child has a fit as this can help the doctors work out a pattern. my mother kept a written record and can now date the fits back many years even though my brother is 45. does the child fit only while asleep or is it because he gets jolted awake first before he has one or does he go to the toilet and have one there (my brother did this on many a night). i understand that its hard to keep a record of night seizures but do it if you can as it will help you a lot to understand. take note of how long they last what time they start and/or anything else that happens during these seizures...



i hope that i have been of some help

take care and good luck

[deleted account]

My son James was recently diagnosed with Epilepsy in Apr. '09. No known cause for it or other med. conditions. CT Scan/MRI all clear. All of his seizures have been during sleep times / or nap times. Our doctors told us this is because the brain wave activity is at it's most vulnerable state during sleep. The REM sleep pattern can cause the neurons to fire as well and this is why some children experience a seizure while sleeping.

Vicky - posted on 07/29/2009

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My son Ryan, age 10 now, also suffers from seizures only in his sleep. He had his first one 3 years ago and then nothing for two years. For the past year he hashad 4-5 during his sleep. He is on trileptal now for about 2 months and so far no more seizures. He is also hearing impaired and has some education issues. He is in special ed classes at school but has no real diagnosis other then the hearing which is mild to mod. He also has alot of social and compulsive issues. All the doctors think he's not quite right, but don't know what is wrong with him. Right now he is at sleep away camp for Lions for hearing impaired kids. So far so good, I haven't gotten any calls and hehas gone before and they have a nurse there, but I am still nervous. I can't wait to pick him up on Saturday. I don't know if this helps, but good luck with your son.

Farrah - posted on 07/29/2009

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Hi there. My daughter, Emily (she is 8) is beginning the process of being diagnosed and such. She had a grand mal in June, with never showing signs of any seizure disorder ever before that night. It was right around bed time and they were laying there watching tv when it happened. A few weeks later, our family doctor ordered an EEG, which came back abnormal with most of the seizure activity happening in the drowsiness and/or sleep state. She also has spike waves and it all seems to be stemming from her left temporal lobe. Our neurologist seems to believe she is having complex partial seizures. I have never seen her have anything other than that grand mal. Emily has some developmental delays in speech/communication and was diagnosed with Selective Mutism when she was three...although after all this seizure stuff, I am beginning to really question that...

So, I know what you mean about the night/sleeping seizure...I think that is what I am going to be dealing with now.

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