seizures at night.

Amanda - posted on 08/23/2010 ( 27 moms have responded )

516

15

34

how do you know they;ve had one? my son screams, hes terrified, shakey, and is nearly impossible to calm down. i caught one or two of these when he was little and in his crib, the one i remember most clearly i woke up in the middle of it and it went on for another 2 minuets. im terrified that i don;t know how long they;re lasting. the doctors also seem to think since i don;t SEE them he;s not having them. i know how he is when he;s just had a scare... he is absolutly a wreck after having a seizure. it is the most upset he ever is. he gets over IVs easier then seizures.

one night he didn;t get his meds (he spat them out.) he was up every hour with them. this is terrifying. he;s on 17mg clobazam at 2. he went through a month where he kept having them every night. they upped the dose three times.he went from 12. to 15 and then to 17.

i just dont know what to do. the doctors stopped looking for the problem after one eeg and one mri. the eeg showed seizure tendencies and the mri was clean.. but why is he having them? and what are they? my mom has epilepsy when she was younger and the doctor said it was partly hereditary.. does that mean its epilepsy?

I;m just so worried about him...

MOST HELPFUL POSTS

Debbie - posted on 08/29/2010

1

0

0

My son has night time epilepsy...his eeg and mri did NOT show seizure activity. He was 10 years old and at that point we only saw one seizure, but my gut said healthy 10 year old boys don't just have seizures (after they ruled out EVERYTHING) so I asked for an over night EEG...he turns out that he does have night time epilepsy, but doesn't have seizures as soon as he falls asleep he goes into epileptic activity. He was on meds for almost 2 years...while on the med his symptoms stopped, they are hoping that as he goes through puberty he will out grow this....

As a mom I say ask for the over the night EEG...find your answers! The nuerology team thought I was just another crazy mom...when they reviewed his scan, they told the residents always listen to mom!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

27 Comments

View replies by

Sandy - posted on 07/13/2011

267

866

16

Denise ... I hope increasing the melatonin will help her. Best of luck.
Sandy Lora

Denise - posted on 07/11/2011

71

1

14

I think I will try a higher dose..I am only giving her 1ml right now. Thanks Sandy..I really appreciate you!

Sandy - posted on 07/10/2011

267

866

16

Denise ... you should try increasing her melatonin. It's all trial and error or tribulations. I've been doing this for almost 12 years. As for your anxiety, you need to get something to ease it. I take Clonazepam and it does help. Good luck. Sandy Lora

Denise - posted on 07/10/2011

71

1

14

Just found this post and wondering if any of you could help me with my anxiety at night..why am I so afraid of what might happen? I fear the worst always and as hard as I try..I cannot stop being paranoid at every strange move my daughter makes in her sleep. She is having cps and on Keppra. She has hers right after falling asleep and we still dont know why..waiting on MRI. I use to love bedtime but now its the worst time of the day for me. I try to trust that she will be fine but this is all so scary to me. My daughter is 4. I have been giving her melatonin for a breif time and it does help some but she still has a lot of jerking and twitching when she first goes to sleep that scares me.

Denise - posted on 07/10/2011

71

1

14

Just found this post and wondering if any of you could help me with my anxiety at night..why am I so afraid of what might happen? I fear the worst always and as hard as I try..I cannot stop being paranoid at every strange move my daughter makes in her sleep. She is having cps and on Keppra. She has hers right after falling asleep and we still dont know why..waiting on MRI. I use to love bedtime but now its the worst time of the day for me. I try to trust that she will be fine but this is all so scary to me. My daughter is 4. I have been giving her melatonin for a breif time and it does help some but she still has a lot of jerking and twitching when she first goes to sleep that scares me.

Sandy - posted on 10/06/2010

267

866

16

Hey Danielle, Joey is going to be 12 on Oct. 14th, and he weighs 100 lbs. I swear by the melatonin. Give her the melatonin an hour before bedtime and you will hopefully (I do) hear the magic words .... I'm ready for bed. Once he lays down before 9 p.m. .... he is sound to sleep for the night, until about 7 a.m. He use to toss and turn and get up ... drove me nuts cause he wasn't getting a good nights sleep. Now he wakes up refreshed and ready to get up, dressed, fed and medicated. Good luck!!!
Sandy Lora

Karron - posted on 10/06/2010

12

25

2

I don't know what your insurance situation is but have his doctors ever mentioned having monitoring in an "EMU-Epilepsy Monitoring Unit"? In the past 5 years my daughter has had 2 rounds in the EMU with many specialized MRI'S, PET scans & a MEG scan and a sleep study last year after some problems she was having at night that I thought were more seizures but her Neurologist told us that many patients with Epilepsy also have sleep disorders. The EMU is the best diagnosing tool because they are under 24 hour video & eeg monitoring & taken off all meds to induce seizures. My daughter's Neurologist also runs the EMU at Memorial Hermann (Houston,TX) and it is fantastic!!
Good luck to you,
Karron

Danielle - posted on 10/06/2010

29

27

0

Thank you for the advice Sandy. I am a nurse and I have patients on Melatonin, but I never thought about it being an option for my daughter. It is an awesome idea. It may also help with her nights when she tosses and turns and talks in her sleep. She is 12 year old and 100 lbs so I will start with the 3mg Melatonin. Thank you again for the great idea.
Danielle Paris

Sandy - posted on 10/02/2010

267

866

16

Danielle .... try giving her 3 mg. of Melatonin and hour before bedtime. Depending on age and weight. My son is 100 lb. and almost 12 years old. I started out with 6 mg. and lowered it to 3. On MY own orders. Try it ... it may give her a more relaxing and deeper sleep and stop some of her seizures. Trial and error. The brain needs to be get into a different realm. Try it. Good luck.
Sandy Lora

Jennifer - posted on 10/02/2010

5

34

1

I would ask for a 5 day video eeg my son had a 48 hr eeg and they caught one just before he woke up. they have all his seizures under control right now except the ones when he is sleeping and dr said she may never be able to control them we have tried all medications at this point. We are currently fundraiseing for 4 Paws for Ability to get my son a seizure alert service dog

Danielle - posted on 10/01/2010

29

27

0

It is very difficult when you don't know why your child is having seizures. My daughter inherited them from my husband, and the doctors had told us that his seizures were not genetic, but they were. My daughter is 12 and has had them since she was 9 1/2 months old. Since puberty has hit, her seizures are changing a bit and she is having more at night. She sometims also screams for 20 or more minutes after some of her seizures. Other times we only hear her breathing funny, so I am sure there are times that we don't know about them. This scares me, but I have over the years had to put my trust in God and know that he will protect her when I am unable to. From what you said, it sounds like your child may have inherited your mother's seizures. Sometimes epilepsy skips a generation, though it didn't in my daughter's case. She takes 4 medications, three of which are twice a day, and still has seizures every 10 t0 14 days, though they used to be more often. Does your childs doctor know about your mother? I would continue to ask and maybe they will try a different medication that may give better control if not able to control completely. Best of luck.

Sara - posted on 09/29/2010

34

17

1

I thought I was the only one who was going thru this! My daughter had the same thing, waking up in the morning, after a nap or in the middle of night shaking, screaming, crying, disoriented, stiff as a board...usually took at least 5 minutes to calm her down. I was the only one who saw this and have kept a journal for almost 6 months now. Her EEG's came back abnormal, MRI of the brain was abnormal and spine was okay. The past month or so has been pretty good, less than 5 that I've seen/heard of. I only have her every other week though, and her dad and his mom, who watches her during the day, don't keep record. Her blood tests showed low numbers in vitamin b6 and carnitine (found in meats and dairy). Her night terrors/seizure activity decreased since starting the supplements, but I don't know for sure if it actually helped or she's growing out of them. They suggested putting her on seizure meds to see if it'll help with her other shakiness when she's awake. They'd find a med comparable to her symptoms and it would be a trial to find something that would fit and if it would make a difference. I'm not sure of all the side effects and that's my main concern on starting her on something. Unfortunately we still don't know exactly what she has, she has symptoms of so many things and has undergone EEG's, MRI's, blood work and a spinal tap, but no result other than "global developmental delay".

Amanda - posted on 09/26/2010

5

65

0

It's hard, isn't it? My son had a grand mal out of the blue one night, then nothing again for a month, then nothing again for two weeks, then it was a daily occurrence, then multiple times a day. CT and MRI were clear, even his first EEG was. Bloodwork was clear, everything. Honestly, it's a GOOD thing if nothing shows but it's also bad because it makes it hard for them to know how to treat. We've been through multiple meds, doses, and combination of meds and we still don't have good control. If he goes a day without a seizure I consider it a good day. It's hard but we just have to keep trying to find what works for him and hope that we will get good control soon.

Colleen - posted on 09/09/2010

31

18

5

Hi Amanda, I know this is very frustrating. My son started having seizures at night when he was 3 and how we found out was his 5 year old brother at the time was sleeping with him and he woke us up saying jacob wouldnt stop moving. anyway the doctor in the ER told us it was probley caused by a fever and he would probley not have anymore. Then he started having them more often and we went thru mri and eeg's. We were told he would probley grow out of them, well now he is 12 and they said the older he gets the likelyhood of him growing out of them was slim. they said we would probley never know why he has them. we have had 3 different doctors now at mayo clinic and they all pretty much tell us the same thing. so thru the years he has been on different medications, they up the doses until they can up them anymore then try a new med. my son would have a seizure then wonder into our room after having them, sometimes we have him sleep in our room so we can see what is going. sometimes he will have a seizure and then get up and wonder around the house in confusion, sometimes he will get real scared and sometimes he will just have one then lay back down to sleep. after 9 years of this, i know how frustrating it is to not know why, and to keep putting him on different meds, they work for awhile then keep upping the dosage and then onto another med. hope you can get some answers. good luck and take care.

Jenia - posted on 09/08/2010

18

0

1

My 3 y/o boy has seizures at night but we rarely know it. Sometimes he will lose control of his bladder (he sleeps in underwear) and will soak his entire bed and still sleep right through it. Then when we try to wake him up, he's very difficult to arrouse. That's how we know he's had one in his sleep. I agree you need to find a new Dr.

Vicki - posted on 09/08/2010

3

21

0

The clinical definition of epilepsy is two or more seizures of unknown etiology (cause). I agree with the others to get another doctor and get more tests.

Crissy - posted on 09/03/2010

2

21

0

I thought I was crazy! About 2 mos ago my 4 y.o. son woke up shaking (more like shivering, not convulsing) sweating perfusely and wide eyed, like a deer in the headlights. He didn't say a word than managed to scream, vomitted once laid back down and went back to sleep with no recollection of the events in the morning. This happened about 10 times in a 2 week period.

About a week after the 1st one started he also began waking up around 5 am and coming into my bed or I would find him on the floor next to my bed. I knew something had to be going on for him to wake up like that. His EEG was 'perfectly normal'. Fortunately for us my pediatrician does not mess around. Diagnosed him with Nocturnal Frontal Lobe Epilepsy, with the Normal EEG and the fact that these episodes seemed to have calmed down he is not being medicated at this time. But does want to try him on melatonin. We go back on 9/14 so I expect that's when he'll start that. He has an appt w/ the neuro doc that day too. There is a very high probability that he will grow out of this. I'm just estatic I'm not the only one.
I did find one thing of interest in the literature my doc gave me...these type of seizures tend to come in 'waves', they peak, crash then tend to cease for a while. I was warned that when they stop to not get too comfortable b/c they can rear their ugly head and they seizures can get worse over time.

I'm so happy to have found this thread. It makes me realize I'm not imagining things.

Jodie - posted on 08/30/2010

6

16

0

I'm pretty sure my daughter is having night-time siezures also. I had already decided to ask for an overnight eeg or something to that effect. The advice you got made me more determined to have one done. I think you are doing awesome, it is so hard, keep the faith. Keep seeking answers and trust your judgement. We know our children better than anyone.

Mary - posted on 08/30/2010

11

117

0

Okay First of all FIND A NEW DOCTOR! No one stops looking for an answer and get away with it with me. There is control for siezures out there and possible there is a reason for them. So... FIND A NEW DOCTOR NOW!
Okay now there are many many meds for seizures maybe your son is not on the right on,as far as the seizure go I am sure they are very scary. Here is what you need to do. Pick him up hold him close and say Mommy is here Mommy is here. Over and over again until he calms down . Or something like that. Just your voice should do the trick.I usually rock or cuddle with me son until he goes back to sleep.
I hope this helps.

Sandy - posted on 08/29/2010

267

866

16

It's possible that night time seizure relief could happen if you give you child Melatonin 1 hour before bedtime. It is natural and turns the brain down. Calms it down so it can get a nice restful sleep. I have been giving it to my son for a few years and it helps so much. He has a good nights sleep and I haven't seen but a couple of night time seizure activity while he's sleeping. They use to happen a few times most nights. He wakes up refreshed and is doing well in school. I've have been using the trial and error routine for 11 years now so I have seen it, done it, experienced it!!! Try it. Good luck,
Sandy Lora

Sheana - posted on 08/29/2010

2

35

0

My son has seizures as well and he has the same thing at night sometimes it only happens when he is getting sick or a fever my neroligist sugested melitolin strips before bed to relax him more at night when we know he is getting sick and it works very well. It is a natural drug to help them sleep it is all natural so you don't need to worry about meds. Talk to your Dr. and see what they say and we also got a video camera to tape our so at night so the dr. could see them. He also could be having night terrors and if he is don't wake him just let him know you are ther and don't touch him let him do what he wants when he wakes up you will know and you just tell him it is alright and lie withhim till he falls back asleep.and then leave his room .. try not to worry to much our kids are alot stronger then we know and if they can feel you are scared it make it worsejust let them think it is natural and if you stay calm it will help

Alena - posted on 08/29/2010

6

3

1

If you want to be notified of night-time seizures, look for a seizure monitor. I use one and they work great.

Debbie - posted on 08/29/2010

19

13

1

My youngest daughter, who is 20, wasn't diagnosed with seizures until she was 17 years old! Initially the doctors thought she was hypoglycemic, but our family doctor wasn't satisfied with that diagnosis and sent us to a neurologist. Subsequent tests indicated that she had been having partial-complex seizures in her left temporal lobe, and had probably had them since she was just a little girl. Suddenly, certain night-time incidents made sense! Since her seizures were of the grand mal variety, they were easy to attribute to other things. As a special education teacher, I felt horrible that I had missed the signs, and that she had gone through most of school misdiagnosed. Since her initial diagnosis, she has had three grand mal seizures, and is on medication. I would push for more answers, even if it means changing doctors. There a different types of seizures - one size does not fit all! Keep a notebook of everything he does that is "out of the ordinary" with the date and time of occurance. Take the notebook with you to your next doctor's appointment. Good luck!

Sandy - posted on 08/29/2010

267

866

16

I recommend changing the medicine. He should not be having more seizures with a higher dose. He could be getting too much of the drug and that is why he's seizing more. Seizure drugs can do that. And get a new doctor. There is a reason for seizures and you have to insist that they do a video EEG, sleep deprived EEG, regular EEG, spinal tap, MRI. Something will show up sooner or later. Insist on the tests. Good luck.
Sandy Lora

G - posted on 08/29/2010

1

15

0

Also watch for he's temperature, usually if its slightly high it may be an indicator that he will have one. My boy is 2 now and hasn't had one since he was 6 - 18 months. We checked it out and found out it was fib seizures. They grow out of them. In the meantime , all the best and Good luck
G

Chelle - posted on 08/23/2010

322

47

78

HI! My son has seizures in his sleep. And I DON'T see them. Our doctors believe it is happening more than we know. We have only witnessed 2 and they were in the morning, one when waking up and another just after being up for about 20 minutes or so. His EEG was normal but he had a sleep study that showed seizure activity all through the night.

I really suggest you keep on the doctors and ask for more tests or a med change or something to help him. The fact of the matter is YOU know your son better than anyone else! Try keeping a journal and write in it after every time you think he has had an episode. That way it is fresh in your mind and take it to the doctor and show them. Point out "this is when it is ssomthing else but this is when I am SURE it's a seizure." Keep on top of them! *HUGS*

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms