Seizures in sleep?

Chelle - posted on 08/06/2010 ( 39 moms have responded )

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Just wondering if anyones children are dealing with seizures in their sleep, when they fall asleep, when they wake up, or altogether? How did you find out this was happening? What tests were performed and gave results? How soon before you got a diagnosis?

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Zoe - posted on 08/21/2010

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Hi there both of my daughters have panayiotopoulos syndrome they mostly have happened during the night. They are now both well controlled on medication. The initial diagnoses was made for my youngest daugher when she was just over 3 she had gone to sleep and I walked into the room 15 minutes after she had fallen asleep to find her sitting up but not communicating she then proceded to go into a complex partial seizure with vomiting at the end when the ambulance arrived they told me she looked like she was post ictal. She went to hospital was there over night and the next day the pediatrician organised for us to get an eeg done which confirmed that she did have epilepsy we then spent the next 6 months getting her medication right. Our oldest daughter the following year was asleep in bed and i heard her say "I can't see" i walked in to find her in a complext partial seizure hers were always a little different in that she did not vomit during the seizure it was usually an hour later after having a severe headache and stomach cramps. She was diagnosed very quickly with eeg and with similiar symptoms to her younger sister. Once you recieve a diagnosis be prepared to work through lots of different emotions, keep yourself informed, remember to ask lots of questions, find someone to talk to and most importantly organise time for yourself. Someone once wrote that those who's children experience nighttime seizures always live with it under the skin, knowing that when the go to sleep at night it is not entirely restful. I think this is so true but it does get easier.

Sandy - posted on 12/06/2012

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Erin .... she should post on here and ask for anyone who is her age to contact her. There is a very wide age range on here. One thing ... her neuro doc will probably tell you that Lecithin isn't a 'proven' supplement to help stop seizures!!! They like pushing drugs because the drug companys give them 'treats'!!! My way of thinking ... you have to try anything and everything to make the seizures stop or decrease. : )

Sandy Lora

ErIn - posted on 12/05/2012

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hi everyone :).....my daughter is 17 and a senior in high school diagnosed with epilepsy 4 years.ago...after trying different medications over the years she is now on lamictal 250mg twice a day...no more grand mals embarrassing her at school camping or at a red light in the car....after her last routine EEG we were told that in fact she is still having them but now the only activity is during the sleep state...my concern is Im not sure how to tell if she has in fact had one or not and she doesnt know when she has them....I have noticed that after a seizure she does sleep the rest of the day and complains of a severe headache....as of right now my daughter has been asleep for 4 days,she was up long enough to attend school monday and made it 2 hours yesterday at school before they called me to pick her...she has a severe headache and cries to just let her go back to sleep..:(....im not sure if it has anything to do with her epilepsy or if something else is going on.....does anyone know what this may be??any help would mean the world to me

Zoe - posted on 08/21/2010

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Just another quick note we have used the AC401 – Movement and sound monitor our daughters stop breathing at the start of a seizure so this monitor has worked well for us.

Dawn - posted on 08/07/2010

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My daughter was 9 months old when she had her first grand mal seizure, but she wasn't diagnosed until she was over a year old. Here in Arkansas, the doctors didn't test her until she had had 3 grand mal seizure events. She had to undergo an EEG, which showed abnormal brain activity during her sleep cycles. It was an "a-ha" moment for us because she had had sleep apnea as a new born. We then suspected that all that sleep apnea had probably been sleep seizures all along. She is now 13, and we've managed to get her seizures under control 99.9% of the time.

However, I have other friends who have children with seizures. One has had difficulty getting a diagnosis, even though I've seen her seizures, and they look the same as my own daughter's seizures. Another friend is an advocate for epilepsy education. She uses an Emfit Seizure alarm sensor pad for her son when he sleeps alone. It is designed to alarm the parents when then child is having a seizure in the night. This enables them all to sleep in their own beds without worrying that they won't know if it starts happening again.

I would try to find support groups in your area for parents of children with epilepsy or special needs. They can not only give you lots of advice, but they can also give you affirmation that you're not crazy....that you know your child better than any doctor ever could....to trust your instincts. In Arkansas, we have PEACE, Parents Education Arkansas about Children with Epilepsy. We do have folks connected to our group who live in other states, so if you need more information, you can try contacting Tina Alexander at this link for PEACE...http://www.peaceinark.com/index.html

Hang in there!

Dawn in Conway, Arkansas

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ErIn - posted on 12/06/2012

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im definitely gonna try the medication first I really hope it helps like it has for your son....I dont want to spend alot of money on something if its gonna keep me awake all night everytime she rolls over :)....I will keep u posted she follows up with her neurologist monday so fingers crossed more answers come our way....do u know of any like support groups online or site like this for the kids to talk and meet other kids with the same condition I know it would be a big help if my daughter had a friend to talk to that knew what she was going through.....Thank u Sandy ur such an angel :)

Sandy - posted on 12/06/2012

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Erin ... I pray the Lecithin and Melatonin work as well or better than they have for my son. I've never bothered with seizure monitors. They are not the most reliable. I've heard that it can actually make people go nuts when the alarm goes off for false alarms more often than for seizures. I truly think the supplements might make her life a lot better and decrease seizure activity, so don't worry about a monitor yet. They also cost a lot of money. Thinking about what I would do to monitor .... I would somehow find a motion sensor like they have for security systems or outdoor lights and have the sensor pointed at her in bed ... but have the light or sensor alarm be in your bedroom. I'm sure you would wake if a bright light came on in your room. Not sure how the motion sensor works but I would take to some people and find out. Please let me know how things are going. Prayers.

Sandy Lora

ErIn - posted on 12/06/2012

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Thank you so much Sandy I will definitely try it ....I also.have been reading alot about the seizure monitors they have out that will alert me if she does have during the night..do u know anything about them if they work and are worth the money???...Thank u.for your help :)

Sandy - posted on 12/06/2012

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Erin ... a couple things to try. Both have helped my son who is now 14 years old. Give her 1 1200 mg capsule of Lecithin every day. It's over the counter and is for brain and nerve function. It has decreased my sons seizures tremendously!! Give her 3 mg. of Melatonin and hour before she goes to bed. It helps put them in a deeper realm of sleep which can stop the seizures they have while going to sleep, during sleep and upon waking. Her doses may need to be increased compared to my sons. Good luck.

Sandy Lora

Marie - posted on 12/03/2012

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my daughter just turned 3 months and started having seizures. We are still in the process of trying to find the right medication for her so they can be controlled. She has had two EEGs done, MRI, and every lab imaginable. Her next step is the VEEG. She has been hospitalized twice in the last three weeks. Still no diagnosis and I'm not sure we will ever get one. All her results come back negative. Look at this as a good sign because it means they are healthy everywhere else!! However, after reading replies from parents I no longer feel so crazy. We have noticed that she only has seizures while she is sleeping or just waking up. Of course every time she awakes I am a nervous wreck. Glad to know I'm not alone. I also started co-sleeping with her. Glad I did because the other night she had two tonic-clonic seizures and was sent back to the hospital. She is so tiny, which makes it hard to catch unless she is directly in my line of sight and she is kind of quiet when they happen. It is exhausting having to never take your eyes off of her for more than three minutes at a time but we have to do what we have to do. Anyways, my point is...don't be shy about being your child's advocate. You are the only person who can do it!! All of the tests we got done were originally rejected by doctors or our insurance until I pushed for them to take care of my baby. I had to continually tell doctors that they were only really happening when she was sleeping. I was told that in the absence of any positive test results she is most likely epileptic but as a rule they usually wait until they have had a few seizures to classify them as epileptic. Keep the faith! You are not alone!!

Yesenia - posted on 10/22/2012

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My son is Autistic, and also has seizures when he sleeps. He is also on Keppra.

He's 16 he had his first seizure 3 years ago, the meds. helped a lot and they stoped. For some reason he started having them May of this year. Since then he's had one to two and month since.

I noticed he has them more when he has signs of allergies, food,seasonal ect. So I had his doc. take a blood test to see if, and what allergies did he have, come to find out he does have seasonal, some food, some animal,but what they did find is that he's ten times more allergic to dust mites. So now I have to keep his bedding extra clean, have a air clean in his room,and special hypo-allergenic mattress and pillow covers. I also started giving his allergie pills. That has calmed him. But I will try your suggestions, It doesn't hurt to try. Check and see if allergies could be the cause.

Sandy - posted on 09/20/2012

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Albert ... give her 3 mg Melatonin (over the counter) an hour before bedtime. It stopped my sons seizures when he was trying to get to sleep, in his sleep and upon waking. You should also give her a 1200 mg. capsule of Lecithin (over the counter) which is for brain and nerve function. Both of these have helped my sons seizures diminish to only 1 every month or so. As for the doses, you may need more of each. My son is 13 and those are the doses I give him. Doctors with not accept that Lecithin helps but my son went from seizures every day to none after I put him on Lecithin. Puberty caused some problems but now he is doing quite well. Good luck.

Sandy Lora

Albert - posted on 09/20/2012

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Our daughter is 41 and has tonic clonic seizures when she first goes to bed and in the early morning. We have a open mike in her room so we can hear her since she usually makes a sound or two when she has a seizure. Clonazapam was just added to her Keppra and Trileptal drugs and has been a great help. She hasn't had one in the morning for a few weeks.

Jenny - posted on 05/24/2011

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my 3 year old son has seizures in his sleep i a reqwesting a sleep eeg next visit 2 dr

Sandy - posted on 03/10/2011

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Denise ... I have been picking and choosing what I give Joey. I am the one who lives with him and knows him best. The doctors are just guessing. It's true. No matter what the doctor says I would try the Melatonin an hour before bedtime. Even if it just gives her a deeper, calmer sleep ... it's worth it!!! Sleep deprivation is a cause of some seizures!! Please try it for her!! Who knows? A better sleep may help her kind of seizures to lessen or go away. Trial and error is our ONLY way to figure what is and is not good for our kids!!! The Lecithin is in the vitamin/mineral section. I happened upon it 8 months ago when I was waiting for my prescription, and like I said, go for it!!! I wish I would have noticed it years ago since Joey is now 12 years old. I started it 8 months ago. Took 2 months and we noticed ... hey, none of us say any seizures today, then the next, etc. and now it's over 6 months without any seizures!! Check to see if it comes in another form besides capsules. If not, just open the capsule and give it to her. Maybe with some kind of food. I give it to Joey 4 nights a week. You could give it at any time during the day and do the Melatonin at night. Get a pill crusher for the Melatonin. Give it with Ice cream, yogurt, apple sauce, or anything she likes to eat. Do anything and everything you can to try and get rid of the seizures!! Good luck!!
Sandy Lora

Denise - posted on 03/10/2011

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Sandy..wondering if this Lecithin you refer to can be taken by a 3 yr old? I asked our neuro about Melatonin and he said that it wouldnt work for my daughters type of seizures - she has BRE...so I have not tried giving it to her yet but you are the second person I have read that speak highly of Lecithin. What age did you start giving that..is it a vitamin?

Sandy - posted on 03/09/2011

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Chelle ... Please try 3 mg of Melatonin an hour before bedtime. It has worked miracles for my 12 year old. He use to have seizures while trying to fall to sleep, during sleep and upon waking. Now he sleeps through the night and no seizures. Melatonin turns the brain down so that they can get into a deeper sleep realm, where the brain is peacefully sleeping. Worth a try. I also added Lecithin 8 months ago, 4 nights a week. He has been seizure free for over 6 months and I credit the Lecithin for it. I have taken away over half of his seizure drugs and he is still seizure free. I've been 'playing' with drugs, diets, etc. since was 9 months old and he's now 12 years old. If you don't try it ... you will never know if it will help your child.
God Bless. Sandy Lora

Colleen - posted on 08/21/2010

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My son is 11 and he only has seizures when he sleeps. we found out about his first seizure when he was 3 and his 5 year old brother was sleeping in the same room as he and he came in and woke us up saying something was wrong with his brother. Through the years we have had jacob sleep in our room next to our bed and monitor his seizures. He usually makes a loud noise and that wakes us up to them. when the medication starts controlling the seizures then we put him back in his own room. and then every now and then we will have him come back in our room to see if he is having any. He has done the sleepover studies at the hospital and also has worn a portable eeg pack for a few days at home and then has had the regular eegs through the years.

Amber - posted on 08/21/2010

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My 2year old son recently started having seizures and his EEG test isn't until next week. The internet searches on answers is naturally driving meCRAZY! He is having them early in the mornings...And I think he has been also experiencing "silent" seizures as well ever since... He appears to be having severe tonic-clonic seizures... The pediatriatian has said he thinks that the EEG will come back with something abnormal, due to him having more than one seizure. He was also born with Pectus Excavatum(sunken chest) And haven't found anything on the computer relating seizures and this deformity together... Does anyone know if there may be a link???
I put out my prayers to ALL the mothers and children going through this...I know how tramatic it can all be... No child or mother should have to deal with this!

Tanza - posted on 08/21/2010

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Zoe - very apt quote re: the sleep one gets at night if your child has nighttime seizures! Thanks for sharing.

Sue - posted on 08/18/2010

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I have twin boys who have nocturnal epilepsy, they started aged 9yrs and are now 25yrs, they have never had a daytime seizure, always during the night something in the rem sleep pattern triggers a grand mal seizure, they had several eeg's and are now well controlled with tegratol retard medication.
sue

Tanza - posted on 08/16/2010

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Hi, Chelle -

our son's ( 8yrs old) first recognized seizure was in his sleep. We were staying @ a friend's house and I thought he was about to wake up - but then he was convulsing back and forth burrowing his face in the pillow. When I turned him over and picked him up, he had the eyes rolled back and was making the typical seizure noises and the shoulders all convulsing - very scary!

He went back to sleep afterwards. We all got dressed and took him to the Palo Alto Medical Center in the SF Bay Area. They saw him and gave him a basic neuro exam - which he seemed fine. However, they referred us to a ped neurologist who ordered an eeg first. That happened on a Wednesday. Thursday theu called with the results stating it was abnormal. Monday we had our appt with the dr whose initial diagnosis was benign rolandic given his age, the area of the abnormal activity in the brain and thinking this was his 1st seizure.

I relaxed hearing the word 'benign' and that he should outgrow this by his teens. I think I felt well - he will have seizures once in a while and we will watch it and eventually he won't anymore.

However as I started reading more about epilepsy on line, we realized that what we thought was a tic (pulling of face and stopping mid conversation) was actually seizures during the day. So I started keepin a log of all seizure activity - still thinking it was okay though since it was 'benign'. Due to the abnormal EEG, they sent him also for an MRI. Luckily that came back clear - results were within a week.

Once he had his grand mal in the early morning hours, he started sleeping in our room and I would watch him. He started having the partial complex seizures when laying down to go to sleep. Before he was put on medication, he was having 8-20 the first hour of laying down. He also typically had his grand mal seizures in the early morning hours- while asleep. He would then go back to sleep afterwards - usually with no after affects.

He then had an unusually bad one on a Saturday morning. When he woke up later he come down crying about having a headache - which he has never done in his life. We gave him headache medicine and he went back to sleep for 2 hrs after crying on mommy for a while. Needless to say we called the neurologist who was then shocked when I told her how many seizures he was having throughout the day and the night time. We finally got a ped neurologist here at home who was contracted with our insurance that Monday. She saw him, read my logs - with frequency, length, descriptions, etc.

She prescribed Keppra - which has been great for him. After the 1st week or 2, once the dosage increased enough we saw clear reduction in the number of daily seizures. That was in May this year. Now it's been almost 3 months seizure free - daytime and night time. =-)

He had an EEG on the Keppra in June. All is looking good and his next ped neuro visit is for December - unless we have to call sooner due to any seizure activity. He has epilepsy and at this point only a 30% chance of outgrowing it - which I will take any day! =-)

Hope this helped! Good luck - Tanza

Chelle - posted on 08/13/2010

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Thank you all so very much for responding and making feel welcome too and being supportive as we go through this. I really appreciate it!

Also, a video baby monitor is something I am looking into now, thank you for the idea!

Alison - posted on 08/13/2010

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Hello My youngest was diagnosed after only 12 months of investigation. We keeped a record of his seizures, he had an MRI scan and a short EEG and an ECG. He has 2 forms of epilepsy as he stares and also has the full shakey seizures. He also has learning difficulties and mobility issues. He is now on 6ml Epilin twice a day which is the maximum dose for him because of his weight. Hope you can get your child diagnosed quickly and you have all the joy I am now getting with the medication controllin ghis seizures. He was having between 4-12 seizures a day we are now on day 6 of no seizures but it has taken us almost 6 weeks to get to this point with his medication. Good luck and take of yourself it can be a very testing and stressful time getting your child diagnosed but we are here for you

Harley - posted on 08/12/2010

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My youngest daughter started her seizures at 16 months old (which is one year ago Aug 14th) and it lasted an hour and a half. after seizures and staring seizures they did the EEG monitor only to find out its epilepsy with which her dad has and IS hereditary in SOME cases.. at first her seizures were just during the day but each one would get later and later and then she had one at night. The monitor they did on my daughter was 4 days long stuck in a bed in a tiny little room with nothing to do! I feel for you on that part BY FAR! It will get better with time. I got a video baby monitor that has the night vision for my daughter so I can see her in her sleep "just in case" it has put my mind at ease times ten. That may be something you would want to try! Good luck with everything your son will be in my prayers and you as well!

Chelle - posted on 08/10/2010

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Rosemarie,
My son has a sleep study done and they found seizures then. But then they did a 24 hour video EEG in the hospital and he never slept more than 45 minutes at any time ad they found nothing. I wonder if doing it like you did with your daughter would be more beneficial to my son.

Rosemarie - posted on 08/10/2010

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my youngest daughter has them in her sleep we took her to a neurologist he did a sleep test and the test that they put the wires all over their head we had to keep her up all day and all night the day before and they were able to pick them up right away. now they are controlled by meds she was 7 when we finally got it diagnose. she use to tear up her bed everynight and wet the bed too.

Chelle - posted on 08/10/2010

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Tonya,
Knowing I am not alone makes me feel better. This is a frustrating and scary thing to be going through but knowing I am not the only one to go through this helps.

Thank you all for responding. I appreciate it.

Gwennea - posted on 08/09/2010

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My oldest daughter started having seizures in her sleep when she was 6 (we think) We had been out late, she fell asleep in the car and when we woke her to get out, she fell to the ground and had a seizure. Since then, she has been having them thru the night and first thing in the morning. Eventually, they started creeping into the day time until she was having 23 a day.She has had MRI's, spinal taps, photo light sensitivity tests, surgery 2 years ago, numerous medications...nothing has helped. The tests showed the area in her brain where the seizures started...not much else. She does not have as many seizures as before but she definitely still has them (about 3-4 a day).

Tonya - posted on 08/08/2010

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my DD whom is now 19 started having grand mals when she was 12. She averages one every 6 mos - just enough to keep her from having her drivers license - which for a teen is devastating. The GM are always in her sleep and 'almost' always w/in 30-60 min of going to sleep. Every test known to man later, several diff meds later we still have no true diag other than "epilepsy" and nothing seems to affect them. I know while none of this makes you feel any better or answers any questions but I do know that knowing that you (and your child) are not the only ones going through this is a comfort in itself.

Patricia - posted on 08/08/2010

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Vivian usually would have a aeizure before falling asleep and during and after. She has infantile spasms. no test

Renee - posted on 08/07/2010

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I had them going to sleep when in first stages of sleep.I've also had them wake me up

Chelle - posted on 08/07/2010

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Jamie, that sounds like my son. We have witnessed only 2 during the day time, any others we actually haven't seen it's just suspected except a sleep study found he was having seizures.

Melissa, my son has had an EEG, actually the VEEG. We were in the hospital for 24 hours. It was miserable though, our son slept only 5 hours the entire 24 hours and the longest time period he was asleep was 45 minutes which IMO was probably not long enough to find anything. He had a sleep study (PSG) a couple weeks before the VEEG that showed he was having seizures in his sleep. And we are seeing a pediatric neurologist. We are actually seeing him in a little over a week. I dunno what else they will do from here, y ou know?

Dawn, thanks for the link!

Ronda, so very true and thank you!

Thank you all for responding! I appreciate it!

Ronda - posted on 08/07/2010

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I myself have had seizures since I was 4 or 5yrs old.
I notice that if I get excited, or worry a lot, that is when the seizures can affect our bodies. Seizures bother me from flickering lights especially. I would stay in a bedroom of darkness to help me from having any other seizures. Give them some broth .soup mix, do not over feed them, they are not really hungry, but they need something for them to get better. Broth soup mix is really the best for them to have and not take chances of chocking or any other that goes on while having a seizure. Give time and Try to .keep calm, and try not to worry so much, there is only one step at a time with our trials that we have. Just try to be patient with your little one. Love them no matter what, I hope that those of you who have these problems will be able to cope with one another. I have had 3 children and not one of them have a sign of seizures at all, and they are all grown up and have families of their own. Do what needs to be done, and your families will be blessed. Keep a record of their seizures, and their medication they take. My prayers are with you all and just try to take one step at a time, and things will go well for you. Trials come and trials go, but for you loved ones there is only the one you have of them, don't put other things in front of them. Help them and don't ignore your other children they need you also. Life is so small, we do not know what tomorrow will bring us, so live for today and continue on to do the best that we can and the Lord will bless you in what you stand in need of, but remember you have to ask for what you need. Remember He is only waiting for you to ask and then He can help you also. Remember we grow as we learn to live with our trials. I hope that this may have helped you in what you stand in need of. I am not affraid to talk about seizures, people talk behind my back and yes, that does bother me, cause why couldn't they talk to me instead of another person, I would give them the answer that they needed. So if you see someone talking about your little one, staend up and don't let them talk behind your back about seizures. Open up and enjoy life while we can. One day at a time.
Today is here, Yesterday is gone, and tomorrow we will see what it may bring, but for now there is only today to live and enjoy.

Melissa - posted on 08/06/2010

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My daughter is nearly 12 and we deal with nocturnal seizures nightly and have been since she was 4. The first seizure was at 8 mos. I happened to hear her on the baby monitor. A long time went by before another occurred or at least we think so. She is a twin and always slept with her sister so we were alerted to the noises she would make. You need a reliable Pediatric Neurologist. They will schedule an EEG and probably meds depending on the outcome. After that is the VEEG (video eeg) This is done over night in the hospital to video and watch the seizures. There is a whole gambit of testing, which we have been through. My girl had a frontal and temporal lobectomy 2 years ago. Unfortunately, it didn't eliminate the problem. We still deal with seizures every night. She has slept with me for the last 3 years and now is adamant about returning to her own bed. I am currently searching the internet for some type of bed seizure monitor so we can all sleep easier. You might get a fairly timely diagnosis of Epilepsy which only means "having had more than one seizure not due to fever". The actual cause of the seizures is more elusive and very time consuming and sometimes you just can't get a reason. We did but at this time there is no fix for it. Hope this helps.

Jamie - posted on 08/06/2010

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Most of DD's seizures have been while she was asleep. All but 2 of them, I think. Whenever she has a seizure she usually screams beforehand so that has been our alert. We also co-sleep so that helps. She's had EEG's, MRI's, CAT scans. All have come back with normal results. We still don't have a "real" diagnosis and she's been having seizures for over a year now.

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