sleep related epilepsy

Claire - posted on 10/25/2010 ( 74 moms have responded )

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My 5 year old daughter has epilepsy but she only has fits in her sleep or not long after waking. Just wondering if anyone else's child is similar and what medication they take? My daughter is on sodium valproate 4ml twice daily, not sure if this is working for her. Should she have more medicine at night than in the morning or does it not make a difference? Any tips? Thanks, Claire x

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Elaine - posted on 11/02/2010

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Hi Claire, My grandaughter does the same thing. I don't know what meds she is on, but she was taking alot, but now fewer, and is doing much better. she is going to see a specialist tommorrow. But, one thing I wanted to let you know was to contact the Danny Did foundation (www.dannydid.org), and ask them if they could help you with an Emfit bed moniter. We got one and it alerts you when she is seizing. Go to that site and read their story, then contact them. I hope all gets better for you.
Elaine

Mary - posted on 10/27/2010

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MY DAUGHTER IS 12 SHE HAVE HAD EPILEPSY IN HERE SLEEP LIKE THIS SINCE SHE WAS 3 YRS OLD. SHE IS NOW TAKING TRILEPTAL 300 MG 2 TWICE A DAY AND SHES DOING GREAT. WE HAD TO TRY MANY MEDS BEFORE FINDING THE RIGHT ONE. SHE BEEN IN THUS MED FOR 4 YRS NOW AND HAVE HAD ONLY 1 EPISODE SINCE THANK GOD...

Sandy - posted on 08/24/2011

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Kayla .. Try 1mg Melatonin. Crush it and put it in yogurt, ice cream, apple sauce, whatever. It promotes a deeper sleep which can keep some seizures from happening. It works for my son now for 3 years at least. I would also put him on Lecithin 1200 mg. capsules 4 times a week to start (open and mix with something, or see what other form is available. It's over the counter.) Lecithin is for brain and nerve function. It has helped stop most of my sons seizures. Doctors won't tell you about these meds because they are not drugs. It you don't try it ... you will never know what works for your child. Good luck.
Sandy Lora

Claire - posted on 08/01/2011

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Hi Denise,

Sorry for the late reply, how is ur daughter now? Did you get any answers from the sleep study? It sounds to me like epilepsy as that is what my daughter goes through and she was diagnosed after her EEG. As she's falling asleep, before she gets in too deep a sleep, her left arm twiches which normally wakes her up and she screams out but it only lasts a couple of minutes, this is what i mean by a fit. At least these are the types of fit/seizure she has now she is on medication as that stops her from having the bigger grand mal type ones.

I keep a diary of all her seizures and a brief explanation of what happened for future reference but lately (since meds 2 yrs ago) she has woken up fitting so they are all pretty much the same. In her earlier days (before meds) she would have different types of seizures but a couple of things were always the same; she fits down her left hand side, it's always just after waking and she's always sick. She's not been diagnosed as having nocturnal epilepsy but that is what i think she has as she has never fitted in the daytime unless she had a nap.

She is now on 7.5ml twice daily and hasn't fitted since April so the meds are controlling her seizures.

Thanks everyone for your helpful comments x

Elizabeth - posted on 11/11/2010

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My daughter is also five, her seizures started over 2 years ago and her seizures also come on during sleep. We went almost six months without her having a seizure until two weeks ago. To my surprise she walked with this seizure (i say it that way because all her other seizures involved her loosing the ability to use the right side of her body). She takes 4.5ml in the morning and 6ml in the night, she still has the twitching in her feet and hands at night but tripletal seems to work for her, when she had this last seizure they raised her medication. Fingers are crossed that it doesnt happen again. Good luck with your daughter.

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Mrs - posted on 06/15/2014

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my son too have in sleep but he z taking valporic acid, frisiuim, zopiramate, n 1 tablet for sleep

Sandy - posted on 11/18/2011

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Hi Catherine .... Trileptal is a very good drug to try. My son has a few types of seizures and this has been his stable drug for over 11 years. As for nighttime. I give my son 3 mg of Melatonin and hour before bedtime. It's over the counter and doctors won't tell you about it. It slows the brain down and puts it in a deeper realm so they are in a deeper sleep which has prevented seizures during the night and his initial going to bed and waking up. I also give my son Lecithin which is also over the counter and for brain and nerve function. This actually stopped his seizures for 7 3/4 months. Puberty set in and things went haywire. lol I recommend you try these because of my experience of handling Joeys seizures since he was 9 months old. I am not a professional but I am better ... I am his mom who will do whatever needs to be done to make his seizures stop or be better contained. Please try these before getting into a lot of drugs. If you don't try ... you will always wonder if either would have helped!!! There is also a device VNS (vagus nerve stimulation) which has also helped my son. Look into it on the internet. Good luck!!
Sandy Lora

Catherine - posted on 11/18/2011

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Hi, my son has recently been diagnosed with Epilepsy, he has "absences" in the day an seizures in his sleep, he has started on carbamazipan, I have yet 2 see an improvement in his seizures but drs do say it could take a couple of months 4 medicines 2 kick in.

Kristin - posted on 11/06/2011

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usually if her seizures are at night seems like neurologist would have a little higher dose before bed but should give a smaller dose in morning just to keep medicine levels so she doesn't have a break through seizure has she ever had seizures during the day

Sandy - posted on 10/29/2011

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Alex, give her 3 mg. of Melatonin an hour before bedtime. I did this with my son and he sleeps well. It relaxes the brain so you drift off into a deeper sleep realm.

Alex - posted on 10/28/2011

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hi. my daughter is 8, only ever has fits when just dropping off to sleep or about 30 mins into sleep. she has been increased to 8mls am and pm but this is relative to their weight, so that befits her size, apparently. Her fits have increased slightly lately (3 in 10 days). She had never had a fit before and now we have more than one a week. I realise that this is low compared to others, but I hate to see her like it and hope that the meds can be adjusted again as I thought that fits were supposed to stop once on meds (?)

JULIE - posted on 10/26/2011

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ask your doctor about keppra, my 8 year old takes 2ml twice a day and hasnt had a seizure in four years.. she too had the night seizures and now she doesnt has any at all.. good luck and hope you find something that will work.. god bless!

JULIE - posted on 10/26/2011

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ask your doctor about keppra, my 8 year old takes 2ml twice a day and hasnt had a seizure in four years.. she too had the night seizures and now she doesnt has any at all.. good luck and hope you find something that will work.. god bless!

Kayla - posted on 10/25/2011

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Going to talk to a pediatric sleep doctor tomorrow. Hope i get some answers.

JoHanna - posted on 10/24/2011

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My son is 8 and he has Benign Rolandic Epilepsy. He started having seizures approx 2 years ago, but the Doctors said that it wasn't a big deal.

He is on Keppra 5 ml am and pm. Take her to a pediatric neurologist to be properly diagnosed and medicated, that would be my suggestion.

Keppra is one of the best meds, because it can be increased slightly and there isn't an interaction between most meds.

Sandy - posted on 10/23/2011

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You should try Melatonin an hour before bedtime. 1 - 3 mg. It is over the counter in vitamin section. My son used to have seizures going to sleep, sleeping and upon waking. Now he has a great nights sleep and wakes up refreshed. It's worth a try!! You will never know until you try it. I am sure glad that I did. Take care and good luck.
Sandy Lora

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Oh, I forgot to say our neurologist put her on 600mgs of Trileptal at night and 300mgs in the morning, which seems to really be working well. Kier

[deleted account]

I know this is an older post, but thought I would respond anyway. My daughter is 5 years old, and has something called Ring 14 chromosome, it is rare with only 100 cases recorded in the world. With this she has epilepsy, always seizing when falling asleep or while sleeping. She is on a concoction of meds. Small amount of Clobazam, Keppra and Trileptal. We have just changed from Tegretol to Trileptal and have seen great change in seizure control, and overal development with our daugher. Kier

Kristin - posted on 09/08/2011

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i have a friend that her daughter had seizures at night she would roll over and all her mom heard was her falling out of bed she would go into her room and she was in a seizure hers happened late at night or early in the morning she on depakote it was nice because we had each other to talk to about seizures i have epilepsy also and have been on depakote i didnt like it it caused alot of my stomache problems my doc lowered my med in the morning and put an extra pill in the morning so i was still on the same dose just set up at different times

Lana - posted on 09/06/2011

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Nikki, Emfit makes a Movement Monitor which is a sensor placed under the mattress that alarms. It is expensive ($600) but they will ship it if you play the downpayment ($200) and agree to a montly pmt of $50 it has no credit check and goes towards the purchase price of $600 and then no further payment is due. Where do you live? I work for a durable medical equipment company and might be able to find a company that rents them near you if you are not in a financial position to buy one...

User - posted on 09/05/2011

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My 3 yr old has epilepsy and althu has had 7/8 fits only 3 off them have been during the day . there mor commen at night and i have yet to put him in his own room . i would like to know if anyone knows off anything that i can use to place under his bed that would trigger off an alarm in the night if he was to have a fit . So my little boy could maybe go in his own room .. thank you nikki

Sandy - posted on 08/25/2011

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Carly ... Unfortunately the H1N1 shot could have been from the vials that had 10 doses in it, which they added a preservative (Thimerosal) to. They use to put Thimerosal was added to the Pertussis part of the DPT shots. Within a couple months of my sons 3rd DPT shot, he started having seizures. The left side of his brain had to be taken out when he was 17 months old because it had turned into a seizure machine. Brain tissue was gray where it should have been white and vice versa, also it was hard where it should have been soft and vice versa. I swear that it was the Thimerosal in the shot. My son was perfect when he was born at full term. I can't even count how many times he has almost died from the seizures. Thousands!!

Try Melatonin one hour before bedtime. Crush and put in yogurt, ice cream or something she likes. I would also put her on some form of Lecithin which is an over the counter vitamin/mineral that is for brain and nerve function. Try everything you can to stop the seizures. Good luck. Sandy Lora

Carly - posted on 08/25/2011

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my daughter is 2 years old and has seizures at night only. shes had seizures ever since she had H1N1 at 3 months old. she is on 3 mls twice daily of keppra

Sandy - posted on 08/24/2011

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Hum Kayla ... maybe some valium. He needs to get a good nights sleep. I also wonder if trying 12 mg of melatonin may help. Try, try again!! LOL Make sure you give the melatonin about 1 hour before you want him to go to sleep. I love it when Joey says, "I'm tired, I'm going to bed"!! Have you tried massaging his feet with some lotion to relax him?? My boyfriend goes straight to lala land when I do that!! Keep trying!! Try the Lecithin too. I buy one, get one free at CVS pharmacy. Could do some good in the hyper department. Each person acts differently to drugs and vitamins but don't be discouraged!!! Keep trying to find 'his mix'!!! Good luck! Sandy Lora

Kayla - posted on 08/24/2011

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We have tried Melatonin. He is on 9mg of melatonin and it doesnt seem to help at all. We have tried so many things, we dont know what to do from here. He has always been really hyper. The other night he stayed up to 3am when i gave him his melatonin. All he wanted to do was play. Then he got up at 8am and was on the go!

Kayla - posted on 08/23/2011

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I think my son has been having seizures since he was 6 months old. He kept doing this one thing with his arms. We took him to have an EEG but it came back nothing wrong. Then when we turned 1 year old he had a big seizure. Then when he was about 16 months. He had another EEG and it came back fine. Then we put him on keppra. He is now 2. But most of his seizures have happened in the middle of the night. or early in the morning. But he still wakes up in the morning really shaky. I dont know why. He has had multiple types of seizures. He has had an MRI and everything came back normal.

User - posted on 08/22/2011

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Hey,
My son used to have that. It was really scary. He had a sleep study and they found out that he was suffering from central sleep apnea. He was having seizures in the night after a time when his brain would stop telling him to breathe. He doesn't seem to do it any more, although I am going to have a follow up done. It's been 4 or 5 years. When he started doing that, the neurologist told me to put him on Depakote and some other antiseizure drug. I wasn't comfortable with that so I removed all known toxins from our environment, put him on an all natural diet (as well as could be done....spent a LOT of money there) bought a super expensive home filtration system for the house so the water would be clean of toxicity, took him to a naturopath and had an online holistic doc as well. I went crazy. I did all the good natural stuff I could do with the guidence of two very expensive docs. My life became this issue in total. He began to get better. Now, was he just growing into his brain? Perhaps. Maybe there was something running through his endocrine system at night that was causing him to awaken. Chinese medicine says that the 1am to 3am hours are when the endocrine system starts to run and everything begins to metabolize. If there are contaminants there for whatever reason, this is when they run through the system. You see.....it could have been anything. I have noticed him starting to awaken again at that time so I am watching him closely and setting up Healthy Kids of Florida so I can get him in again for a new study and MRI. Best of luck to you. My best advice is to temper everything a doctor tells you with a lot of research and a lot of questions. I was fired from a neurologist once though, so be prepared to mee with some nasty looks when you walk in with a google search in your hand. I recommend a doc that encourages you to research. I didn't sleep back then...I watched my fish grow during the night. Those were hard days. Hang in there and make sure she gets a lot of rest.Sometimes docs are just trying too. We can help them. We love the patient and care more about the cause than they do.

Sandy - posted on 08/14/2011

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Kathy ... the Melatonin truly helps to attain a deeper sleep. With his age, he may need a larger dose. Trial and error until you find the right mix. As for Dilantin ... keep a close eye on kidney function with blood tests, and it does make hair grow, everywhere!! My 12 year old had hair on his legs when he was 2 or 3. As for Banzel ... my son has issues with temper. Not really bad but still caused problems. Good luck!! Sandy Lora

Kathy - posted on 08/14/2011

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my son's siezures are like that, he's 18 and has had epilepsy since he was 5yrs. old. He takes Felbatol, Dilantin, Banzel, and Celontin

Sandy - posted on 08/12/2011

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Denise ... You need to try Melatonin and hour before he goes to bed. My 12 year old gets 3 mg and he falls to sleep nicely and usually sleeps straight through the night. He use to have seizures upon falling to sleep, in the middle of the night and upon waking!!! Melatonin slows the brain down and enables them to get into a DEEPER sleep which overrides the seizures!! Joey was tired when waking because he wasn't sleeping well, now he is up and bouncing around getting ready for school. There is also a vitamin/mineral, Lecithin 1200 mg capsules, that I give Joey one every day. It's for brain and nerve function. After Joey was on it for 4 or 5 weeks ... his seizures stopped for 7 3/4 months. His seizures are not as bad as they were and I am still trying to find the 'perfect' fit for his brain. Joey only has 40% of his brain due to surgery and stroke. He has battled to live since he was 9 months old. That is the reason I have my circle of moms for mom's of Epilepsy/seizure disorder kids. I feel the need to help others and to give back info I have dug up and learned by trial and error!! Please give these things a try!! You don't have anything to lose but seizures!!! Good luck!
Sandy Lora

Sandy - posted on 08/12/2011

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I personally think that the Pertussis part of the DPT shot is what caused my son's brain to turn into a total destruction. The Pertussis part contained a preservative called Thimerosal which contained 40~50% MERCURY!! One drop of mercury spilled in school and it's evacuated and the fire dept. sends in the hazmat crew!! I also believe that this preservative has a lot to do with Autism!! I also recommend getting baby shots one at a time!! How can we tell which shot causes side affects, if they give the baby two or three shots?? Think about it!! It is worth going to the doctors several times so YOU know if the baby is having a bad reaction to a shot and you will know which shot is causing the problems!! We have no proof of what started the seizures but I can sure make some very good guesses just by a little research!! Take care.
Sandy Lora

Denise - posted on 08/09/2011

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Good morning, Claire. Hope everythings well this morning. Unfortunately, we don't have a reasoning for Norman's seizures either. His birth sounds exactly like yours. Therefore, maybe the use of the forceps did trigger the seizure activity. However, it went unnoticed until he was 4. He was really bright and did well developing, but all of a sudden, one day, it began and here we are today. I try my darnest, however, to make his life "normal" each day. He is included in everything and enjoys it to the fullest. So enjoy your little hunny bun to the fullest.

Claire - posted on 08/09/2011

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Hi Denise,

My daughter was 2 when she started having seizures (she's now 5, nearly 6) but they can't tell me why she developed epilepsy as there is no history of it in my family. Do you know the reason for your son developing epilepsy? My mum thinks it has something to do with her birth as she was forcep delivered quite roughly but i can't prove it. I hope things continue to be great for your son, and I will keep my spirits up. Thanks for your post, Claire x

Denise - posted on 08/08/2011

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Hi Claire, my name is Denise. My son, Norman, is 26 (will be 27 this month on the 26th), has sleep induced seizures as well. I still feel blessed and feel that he is doing much, much, much better. He began having seizures at the age of 4 and they were all day as well as night. We have done it all and been to several doctors from Baton Rouge to New Orleans. Right now he takes Phenobarital 90ml each night, Keppra 500 ml, 2 at night and 1 in the am, and Lamictal, 200 ml, 2 at night and the 100ml 2 at night and 1 in the am. I know it sounds like a lot, but it helps. He is capable of going to his job at the ARC center and does not have any daytime seizures. He does have them at night, either a few moments after he goes to sleep or a couple of hours before wakeup time. But he's great. Keep your spirits up, your daughter will be fine. If I can say, Prayer works wonders as well.

Melissa - posted on 07/27/2011

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My son's seizures usually occur early in the day. he is taking keppra and lamotrigine (sp?) he is now 17. his seizure meds are the same, morning and night. he takes other meds for autism. i don't know whether this is much help! melissa

Sandy - posted on 07/27/2011

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Hi Claire .... have you ever given your daughter Melatonin? It's a vitamin/mineral that turns the brain down so they get into a deeper sleep. The deeper sleep keeps seizures from surfacing in many. It has helped my sons for years now. He would be up and down all night with seizures and then he'd be exhausted when it came time to wake up and go to school. He would also have seizures when he woke up but that too has been curtailed. I hope you take this advice and try it. You will never know until you try!! I give Joey 3 mg. one hour before bedtime. You can try 1 mg. and increase up to 6 mg. Joey slows down and then says, I am ready to go to bed. The best words to hear some nights!! : ) I also give him Lecithin 4 nights a week. Vitamin/mineral 1200 mg capsules. Joey on it 4 weeks and stopped seizing for 7 3/4 months!!! Good luck!
Sandy Lora

Suzanne - posted on 07/21/2011

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Hi there, yes, my 7 year old son was diagnose last August with what sounds exaclty the same as your daughter. He is on Epilim (which I think is the same as your Sodium Valproate). He is now on 9 mls twice a day. When the medication is put up he is fine for maybe a week or two then starts to go downhill again. It has been really hard because our sign for one in the night is usually him having a wet bed because otherwise his toiletin is fine.
The only thing I could recommend is talking to the Doctor you see. Also keep a journal of everytime she as them and what they are like and take that to the Doctor.

Elaine - posted on 07/19/2011

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@ Whitney a simple seizure is one that the person does not loose awareness but has an event that they cannot controlled, twitching, smells whatever but they know it happens. Partial complex seizure they are not aware of what is happening, it may be that they kind of zone out--stare into space--my son does that. Other things too, it depends on what part of the brain is affected, Partial complex they don't know it has happened but they can walk, etc no loss of control in that respect. My son has tonic clonic at his worst, he looses unconsciousness then his whole body stiffens and trembles. We have often felt like we were just out there on our own. He started 1 Aug 10 and just got a neurologist appointment the end of June 11. He takes Keppra and I have him take Lecithin because it is known for helping to improve brain conditions. He is 17 so it can be tough getting him to take care of himself. Epilepsy is very much learning what triggers the individual's seizure and controlling it. For my son it is eating well, sleeping well and often not doing the things other teenagers are doing. The keppra works well for him. They gradually increased his dosage, since he has seizure in the morning the neurologist increased the keppra evening dosage so it is larger than his morning dosage. This could be something you would be interested in, your daughter has night, morning seizures. But you must learn about the specifics of individual's condition and act accordingly. Many seizure can be reduced in severity or stopped by knowing the triggers.

Whitney - posted on 07/19/2011

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My daughter suposidly has simple and complex partical seizure disoder and she has more episodes at night than during the day or like u said right after waking, she is on kephran and carbatrol but were kind of in limbo too!

Elaine - posted on 01/11/2011

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Paula seizures can have some differences in appearance. Most people think of the trembling part, Seizures can be just staring, flashes of light, smells that aren't there. Myoclonic seizure are trembling or jerking of the arms or legs quite often at night or early morning. When my son has a tonic clonic it starts with a loud groan, this is caused by the air being force out as the seizure starts. Your son's choking may be something like that. If you haven't done so already take your to the DR. and discuss his symptoms, write down everything he does so you don't miss it when you see the DR.

Maria - posted on 01/08/2011

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This is actually not un common - A number of siezures happen before waking and right after. What type of siezures are they . My son has 30 second tonic clonic siezures in the moring . Sleep study and EEG may be a good idea. Meds need to be consistence level in the bloodstream. Has her siezures been diagniosed ? Myclonic etc ...

Denise - posted on 01/07/2011

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Thank you...it sure is nice to see some good outcomes..I am so happy for you and your child! I am praying the same happens with us..my daughter has only had sz's in her sleep so far, she is 3.5. Waiting for her sleep study this month.

Denise - posted on 12/20/2010

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My 3 yr old daughter has not been dx with epilepsy yet but I have my thought..she has had one febrile seizure, one grandmal sz and several "incidents' at the beginning of sleep where her shoulders and legs have jerked more than usual and when I woke her up (because it scared me so bad), she woke up but her body kept jerking. If someone here that has experience with sleep seizures can tell me what this might be or if anyone else has witnessed this with their child, I would appreciate some support here. I am quite frantic myself and have to wait for her sleep study which is not until 1/27/11. I was just wondering Claire what you mean by "fits". My baby had an abnormal eeg but her first visit to the ped neuro did not insist on a sleep study because he said her report didnt look that bad at all...

Claire - posted on 11/12/2010

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Thanks Marla, do you know if loss of appetite is a side effect of the medication or is she just going through a phase lol as i can't seem to get any food down her? She's never really been a big eater but she is just so fussy lately, she has school dinners n the kitchen staff have complained to her teacher that she doesn't eat enough. I've tried packing her lunch but she rarely eats it. She won't eat any form of potato or pasta, she barely eats bread, the only meat she'l eat is chicken or ham, she suddenly decides she doesn't like certain fruit - it's an absolute nightmare trying to get her to eat something!

Thanks Elizabeth, yeah that is unusual for them to be able to walk that must've been frightening. My daughter has left sided seizures and for a while after she can't lift her left arm or grip things. (good job she's right handed). They've just raised her meds too but they didn't say to split the dose as hers are always at night also.

Claire

Marla - posted on 11/11/2010

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Hi Claire.. It is interesting to see how many mom's have this same issue. My 12 yr old son was diagnosed four years ago after his first (and only) grand mal. At the time, the ER Dr. believed he was having a night terror. At the time he was put on Depakote which I personally would not recommend. He had to have blood tests every 3 months to monitor his liver function, it caused major mood swings, weight gain and sluggishness. He is now on Topomax which seems to work well. The only thing side effect I notice is the sluggishness. My son takes equal dosages morning and night even though the last three EEG's he has had shows seizure activity for the most part, only when he falls asleep. I believe that the equal doses is to help keep the medication built up within the body. Good luck to you and your little one. Marla

Claire - posted on 11/10/2010

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Thanks Beth i'l bare that in mind.

Yeah i hate that when people say 'oh she'll grow out of it' yeah she might but in the meantime...

She's only on sodium valproate at the moment, nothing else. I've not really been given a proper diagnosis either as all her seizures are different, i mean the first seizure she had was by far the worse, they called it an idiopathic prolonged left sided focal motor seizure then after a couple more seizures they said she had multifocal epilepsy affecting predominately the right hemisphere (hense the left sided seizures) then they called it focal epilepsy with occipital paroxysms. I mean seriously like i'm supposed to understand what type she has.

The seizures she has at the moment are triggered by her falling asleep it seems but she is aware of these and screams out as they really frighten her. She seems to be having these more frequent than when she wasn't taking medication which leads me to believe that the medication isn't working or maybe i'm just being impatient?

Melissa - posted on 11/09/2010

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Our son takes medication twice each day, with breakfast and with his evening meal. Today, he had a seizure in the morning, after his med and morning seizures are common for him. For him, seizure meds taken within an hour before a seizure don't change things. Almost all seizures are morning (before noon) regardless of whether he has been medicated.

Anri - posted on 11/09/2010

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My daughter was diagnosed when she was 5 weeks old. also using keppra, unfortunately its not under control yet, but we are living with it one day at a time. the ultimate goal is to get off phenobaritone which she is also using. are you also using peridoxine, b6? did you also get the, they outgrow it?in my opinion only the seizures are outgrown?

Melissa - posted on 11/08/2010

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Just a note: our son is also autistic and would not sleep if it weren't for seroquel. He didn't take it as a young child and the entire family was seriously sleep-deprived. Different situation.

[deleted account]

WHat type of seizures does your daughter have? With certain types of seizures this happens. What it is is the electric waves that keep getting interrupted is more active before during and after sleep. This is when the brain is wanting to relax. With the interuptions it isn't allowing that to happen. Ask your Neurologist for lamictal and see if he could recommend a medication that can help with her sleeping activities. Most young children should not take any sleeping medications. Another thing you can try is 30 minutes before it is time to go to bed, read to her, talk to her about happy things, listen to her, and if need be lay down with her til' she falls asleep! LOL ): o ) Beth

Melissa - posted on 11/07/2010

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Our son (now 16 years old) frequently has seizures in shortly after he awakens and has had some in his sleep. He takes lamectrol, adderal and risperdal in the morning and lamectrol, risperdol and serequel in the evening. Rarely has he had a seizure after lunchtime in years. He had the same situation with toridol or topomax (sorry about my poor spelling). I haven't seen a change in either the time or the frequency based upon his meds. I have noticed an increase in frequency since he entered puberty.

Claire - posted on 11/05/2010

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I know when my daughter has had or is having a seizure at night because she screams out as she is aware of them now. The last time she had one (a couple of weeks ago) she tried to stop her arm from shaking with her other hand whilst screaming for it to stop. This was very distressing so I'm trying to get her on the right dose to make them stop. Before she was on any medication (about 18 months ago) she would have the bigger seizures that she wasn't aware of which were scary to watch but at least didn't frighten her. I speak to her specialist nurse regularly who is very understanding and is also looking for seizure freedom.

My daughter had an MRI which came back normal and an EEG which suggested epilepsy nearly 2 years ago. We have no history of epilepsy in the family so it has all been a bit of a learning curve but we will get there. Thanks everyone for your kind words of encouragement, Claire x

Angela - posted on 11/04/2010

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Have you had the sleep study done on your daughter? We discovered our son seized very hard at night even in his sleep. We had the hardest time finding a med that would slow the siezures down or even lighten them. ended up discovering Keppra worked great for our son where the topomax , phenobarbatol were not very good for our son. so many famillies have soo many diifferent experiences on the different meds. Just get a sleep study and see what your neuro thinks. Have a great day.

Faith - posted on 11/04/2010

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My daughter was the victim of child abuse at 3 years old, and ended up with epilepsy. She was on Keppra (Levetiracetam) 100 MG/ML solution, 6.8 ML twice daily, and she didn't have not one grand mal the whole time she was on it. If you think your child is still having problem's, talk to her doctor or neurologist about whatever issue's you have. If the doctor doesn't seem to listen to your concern's, I would find another doctor. One thing though, do not change the medication without her doctor's approval. Seizure medication can be extremely dangerous if used improperly (I'm epileptic myself, and I've been warned by my doctor). Wish I could give better advice. Hope everything goes well for all of you.

Sue - posted on 11/03/2010

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I have twins with nocturnal epilepsy, something in there sleep pattern triggers the tonic clonic seizures, this started aged nine and they took sodium valporate, they weaned off that as teenagers as it does not mix well with puberty. They now use Tegratol with good control, they have never had a day time seizure, so this enables them to have a driving licence now they are older. Hope this helps a little.

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