Epilepsy Foundation

My daughter will be 3 in April. I have a very hard time getting her to fall asleep at night. She takes Trieptal twice a day. Does anyone else have trouble with their child with Elipesy and sleep? It's so stressful! I'm constantly in a state of worry. She sleeps between my husband and I because she has some seizures at night. The lack of sleep seems to make things worse. Everytime her medication has been increased her neuro tells me to expect her to be tired but it dosent seem like she ever is. Any suggestions would be appreciated. My 5 year old goes to bed with no trouble. I try so hard to stick to a strict bedtime to prevent seizures but most nights it takes her well over an hour to fall asleep. Thanks!

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Ask her doctor about giving her melatonin.

Try a lavender bubble bath followed by lavender lotion. Wrapped up by a bedtime story.

My 13 year old has sleep problems and has since she was about the same age as your daughter.  She is on melatonin at night as well as clonidine to help her sleep.  It helps but we still have issues.  She was having sleep problems before starting seizure meds. I would talk to your neurologist about it.

Michelle

It takes my son an hour to fall asleep too, because of his seizures. He was having a few seizures last night and once they were done he fell right to sleep :( something i need to bring up to his neuro

My son is the same way.  All of Andrew's seizure are only while he is sleeping and he fights sleep constantly.  Andrew sleeps in between my husband and I also. Bedtime every night is a struggle for us too.  A nice hot bath sometimes helps Andrew.

some of the medications can cause insomnia.  I don't know about trileptal - but my daughter is on lamictal.  we changed the timing of her evening dose and now it is much better.  definitely mention this to your neuro/epi.

If they are fighting sleep, that is a different story!

They are afraid to go to sleep because they are afraid of the seizure/s. Let me explain. After you have fallen asleep, your mind and body are in a relaxed, then all of the sudden you think you are having a nightmare, you feel paralyzed because your muscles are contracting and causing a convulsion. So now your mind can not think, your body can not move, you have no control. Fear sets in and only grows stronger!

Next night comes around and they do not want to go to sleep because they do not want to face that same monster again!

 From my experience, have a bedtime plan. Kids need to have their own bed, parents need to have their bed time together as well. There are inner comes, specially made epilepsy devices that detect when your child is seizing. You have to show your child you are not afraid for them, you need to be strong, and show them how they can be your hero at bedtime. either by a story, music... T.V. and video games are one of the worst things to have your kids do to settle down before bedtime. This stirs up the mind and emotions even if you do not notice it up front. When they are laying there in bed, all that violence and action is flooding through their mind and their adrenalin is pumping quickly through the blood stream, then all the sudden nothing, bedtime, the brain triggers and bam... a seizure hits! This is only one scenario.

Hope this helps!

Thanks everyone for your feedback. It really helps to hear others input. Our daughter has a very good Neurologist at Akron Children's Hospital that we see on a monthly basis. When she was 14 months old she had her first seizure. We were at my in-laws house. It was just a normal Saturday afternoon and both kids were playing. All of a sudden Emma drops to the floor and begins convulsing. She stopped breathing. My heart stopped. It was the most terrifying point of my life. When she finally came to it was hard to keep her awake. She had a pretty bad seizure and it took her awhile to recover. The next day the same thing happened. She was admitted to Children's Hospital for several days. We've been seeing her Neuro on a montly basis since. The last couple of months we've increased her meds each visit. She is now maxed out on her Trieptal. We've been told that the increases would make her sleepy until her blood levels had time to even out, but it never seems to make her tired. The Dr's office looks at me funny when I tell them this. I have discussed over the last few visits my concern with her falling asleep. I will address it again with her Neurologist. I'm sure fighting sleep is part of it. I wish someone would tell me its bedtime! She has a bath and story everynight before bed. Maybe it's because I'm next to her at night that she can't fall asleep. I'm not sure anymore. Her Neuro told me she needs to sleep next to me. Not all of her seizure's are at night. She has them in the day also. Her last EEG picked up 2 episodes during the sleep portion of the test. Perhaps she should be in her own bed with monitors. Maybe she would sleep better. On the other hand I'm right there if she needs me. It's hard to talk to people that have not been through the same thing. Everyone wants to help but the don't quite understand. I pray that she grows out of this.

I do understand, I have epilepsy myself. I was born with it. My worst nightmare was to have my kids get epilepsy! I know the ends and outs of it. When my youngest son turned thirteen, one night my husband and I had gone to bed. We had maybe been in bed a half hour. We heard these funny noises coming from our sons' room, we thought he was dreaming. We got up and looked in on him. He was shaking viciously, screaming bloody murder and gargling at the same time. My nightmare had come to life! My son was having a seizure! My heart stopped and dropped to the floor, I knew exactly what he was going through and could not help him except to talk him through it as my husband has talked me through so many of my own before.

We found out our son had what is called " Rolanic Epilepsy". the body was growing faster than the brain or the brain was developing faster than the body could grow. This type of epilepsy last about to an average age of 14 years old.

  I had a hard time going to bed at night, as well as my son did to. We both knew what the seizure held for him. we had to figure something out that would help him to sleep and help me to keep my nerves calm as well. Because of my first hand experience with seizures, we talked about the fear and how scary these seizure made him feel. I told him it was okay to feel the fear, but to also know that dad and I are right here and will never leave you! We also talked about praying to GOD when he first gets into bed and ask Him to watch over our son and take care of him through the night. Then we would sing " Jesus Love Me" a couple times through and then I would sit there til he fell asleep. Then I was able to go to bed and sleep well myself, because I knew he was being taken care of. We had done all we could to calm him before he went to sleep and he had one more seizure that year. Since that time he has been seizure free. He now is driving and loves life!

I hope this gives you some comfort Kim!

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