Murmer Posted September 13, 2011 Share Posted September 13, 2011 Does anyone here have experience with sleeping seizures? I just found out that the EEG we did thinking we were ruling out 1 reason for dd's odd behavior just came back positive for seizures while she was sleeping. I wasn't able to get a lot more information from them because dd was throwing a fit...they said they will call later but I am curious about experience here. We are starting her on anti-seizure meds but one of the side effects is bad behavior...so we will see what is going to happen. Basically I am looking for more information and it will be ok stories. TIA Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted September 13, 2011 Share Posted September 13, 2011 My ds had absence seizures when he was young (from 3-5 maybe). Often they happened in his sleep. The meds stopped the seizures and he (asd) gradually stopped having regressions and his behavior improved. He was on meds for about 3 years. The only negative was that the meds made him more tired, but since he didn't sleep much as a kid, that wasn't all bad (helped him sleep a little more). When he came off the meds things took another big step forward. For us, discovering and treating the seizures was a very positive experience. Understanding the cause of some of his issues and having those resolve - terrific, encouraging, and even worth the sleep deprived EEGs and medicine side effects ;) Quote Link to comment Share on other sites More sharing options...
Murmer Posted September 13, 2011 Author Share Posted September 13, 2011 My ds had absence seizures when he was young (from 3-5 maybe). Often they happened in his sleep. The meds stopped the seizures and he (asd) gradually stopped having regressions and his behavior improved. He was on meds for about 3 years. The only negative was that the meds made him more tired, but since he didn't sleep much as a kid, that wasn't all bad (helped him sleep a little more). When he came off the meds things took another big step forward. For us, discovering and treating the seizures was a very positive experience. Understanding the cause of some of his issues and having those resolve - terrific, encouraging, and even worth the sleep deprived EEGs and medicine side effects ;) Thank you so much! I am glad to know that it was a very positive thing and that it was not something he was on forever. I am still very surprised that she has seizures but hopefully the medication will be successful and that it will end up so positively! Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted September 13, 2011 Share Posted September 13, 2011 What kind of seizures? What medication/s/? Some of them are worse then others. My 4.5 year old DD stared medication at 1 and just recently weaned off, I know there are other moms on here with experience in this, too. Quote Link to comment Share on other sites More sharing options...
lailasmum Posted September 13, 2011 Share Posted September 13, 2011 Are these epileptic seizures? My son has non-epileptic seizures, he has dysautonomia known as RAS here. I know at least one kid with dysautonomia who has seizures in their sleep and medication doesn't help. I know sources of good information about my sons sort of seizures but may not be any help to you as I get the sense you are talking about epilepsy, but let me know if it is any use and I will post them. Quote Link to comment Share on other sites More sharing options...
Murmer Posted September 13, 2011 Author Share Posted September 13, 2011 What kind of seizures? What medication/s/? Some of them are worse then others. My 4.5 year old DD stared medication at 1 and just recently weaned off, I know there are other moms on here with experience in this, too. Are these epileptic seizures? My son has non-epileptic seizures, he has dysautonomia known as RAS here. I know at least one kid with dysautonomia who has seizures in their sleep and medication doesn't help. I know sources of good information about my sons sort of seizures but may not be any help to you as I get the sense you are talking about epilepsy, but let me know if it is any use and I will post them. Honestly I am not really even sure what kind of seizures they are, dd was in the midst of a MAJOR meltdown...the word epilepsy was not used in describing it. Basically the Dr (not the one we went to see) walked in and said we need to put her on seizure med, that she had spikes on the EEG that indicated that she was having seizures mainly while asleep. Mind you they didn't even read the report (from 2 weeks ago) until this am so there may be more information forth coming but so far not a lot. Right know they have put her Keppra? And we are suppose to set up an MRI to rule out other things causing the seizures. So I am just trying to learn what I can with the limited information we have right now. Thanks Quote Link to comment Share on other sites More sharing options...
littleWMN Posted September 14, 2011 Share Posted September 14, 2011 I'm going through this same thing right now. We just found out my dd5 EEG from last week came back abnormal while age was sleeping. Anther said potential epilepsy but did not mention medication. She will have an MRI and a 24 hour video EEG. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 14, 2011 Share Posted September 14, 2011 My daughter is on Keppra and it is HELPING her behavior as well as seizures. I would make sure that you get a top notch pediatric neurologist--even if you have to travel a few hours to see one. Take another adult with you to the appointment so that they can examine dd and then have the other adult take her out of the room so that you can talk to the doctor with out interruptions---believe me, I know what a fit can look like in the doctor's office and then nothing gets discussed well. Write down your questions, concerns, any birth family history--prenatal exposures, medical concerns, etc. Given some other things going on, the doctor might also want to check for various genetic and mitochondrial issues (most done with blood test) to see if they can determine the reason behind the seizures--along with the MRI, etc I believe she was adopted through foster care, right? If so, make sure that her adoption medical subsidy is brought up to speed and you might qualify for Children's special health care services which can provide respite, mileage pay for doctor's appointments, extra insurance, etc. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted September 14, 2011 Share Posted September 14, 2011 All my kids have had abnormal overnight unmedicated EEGs - SillyAutismMan the worst. His are in the language processing part of the brain, which would explain a lot :glare: He did not get a proper diagnosis until he was over five years old and by then a lot of damage was done. But it is 15 years now on Depakote and as long as we keep his levels high he has normal EEGs and can learn/speak. One of the girls had a similar EEG pattern but since we knew what to look for she got started on meds a lot younger than SAM, and is now a normal high school freshman. She was able to wean off meds after a year and be fine. Yet another girl had a much milder (?) EEG and a short dose of meds was all she needed. What part of the brain is showing the abnormal activity? Quote Link to comment Share on other sites More sharing options...
Murmer Posted September 14, 2011 Author Share Posted September 14, 2011 My daughter is on Keppra and it is HELPING her behavior as well as seizures. I would make sure that you get a top notch pediatric neurologist--even if you have to travel a few hours to see one. Take another adult with you to the appointment so that they can examine dd and then have the other adult take her out of the room so that you can talk to the doctor with out interruptions---believe me, I know what a fit can look like in the doctor's office and then nothing gets discussed well. Write down your questions, concerns, any birth family history--prenatal exposures, medical concerns, etc. Given some other things going on, the doctor might also want to check for various genetic and mitochondrial issues (most done with blood test) to see if they can determine the reason behind the seizures--along with the MRI, etc I believe she was adopted through foster care, right? If so, make sure that her adoption medical subsidy is brought up to speed and you might qualify for Children's special health care services which can provide respite, mileage pay for doctor's appointments, extra insurance, etc. Thank you...sadly the first neurologist appt we can get is in Jan :( Thankfully the dr we are seeing for child development was savy enough to order the overnight EEG and insisted it get done quickly because of insurance stuff. So now we are waiting...but we are on the wait list for the neurologist and can be there within an hour if they have a cancellation. We have done a genetic screen and the neonatal panel and sadly have no birth history :( I am really hopefully that my daughter will have a positive response to the Keppra. All my kids have had abnormal overnight unmedicated EEGs - SillyAutismMan the worst. His are in the language processing part of the brain, which would explain a lot :glare: He did not get a proper diagnosis until he was over five years old and by then a lot of damage was done. But it is 15 years now on Depakote and as long as we keep his levels high he has normal EEGs and can learn/speak. One of the girls had a similar EEG pattern but since we knew what to look for she got started on meds a lot younger than SAM, and is now a normal high school freshman. She was able to wean off meds after a year and be fine. Yet another girl had a much milder (?) EEG and a short dose of meds was all she needed. What part of the brain is showing the abnormal activity? Thank you, I believe the Dr said that it was in the temporal lobe...which could honestly explain the odd behaviors that she has...so we shall see. It is good to see that this is not an unusual thing to happen although unexpected. I am grateful that it appears with medication it can have a very good prognosis. Thanks to everyone who answered. Quote Link to comment Share on other sites More sharing options...
SquirrellyMama Posted September 14, 2011 Share Posted September 14, 2011 My oldest dd had seizures between the ages of 6 - 8. They were absence seizures and happened while she slept and awake. We had her on meds for a couple of years. She hasn't had a recurrence since 8. I never noticed any behavior problems with her medication but she was on a very low dose. The side effects on the information packet just about did me in but luckily we never experienced any of it. Kelly Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 14, 2011 Share Posted September 14, 2011 Glad you are on a cancellation list. That just seems really long to get in WITH an abnormal EEG. Just call the nurse every week or 2 and remind them that you can be there in an hour with notice of a cancellation. Polite but persistant often gets me in early with specialists. Did the doctor mention a blood test to check Keppra levels after a few weeks? I think it is optional for Keppra. I would also keep a journal of sorts and note anything different each day---appetite, sleeping, mood, learning, physical ability, speech, etc. That way you can note any areas the meds are helping and identify if there are any negative side effects. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted September 14, 2011 Share Posted September 14, 2011 Another parent of a kid who had positive behavioral changes on Keppra. Her behavior is worse now off it. :lol: I would ask for a blood test to check the levels after a few weeks on it. Quote Link to comment Share on other sites More sharing options...
Murmer Posted September 14, 2011 Author Share Posted September 14, 2011 Thanks, I got some more official information in the mail today, it is epilepsy officially...we are scheduled for an MRI next Fri (they are squeezing us in because our insurance deductible restarts on Oct 1). From there we are getting weekly follow up phone calls from our primary doctor and an office follow up in 1 month, unless it comes back abnormal. They are not doing the blood test mainly I figure because they are not sure if she will cooperate with a blood draw. So I will keep on top of everyone to make sure that we can get in sooner...and hopefully this will have a very happy ending right. Quote Link to comment Share on other sites More sharing options...
Mergath Posted September 14, 2011 Share Posted September 14, 2011 I have epilepsy as the result of some kind of abnormality in my temporal lobe, though I didn't start having seizures until I was in eighth grade. I've had grand mal seizures both awake and asleep. I can't tell you too much about the seizures I've had in my sleep, other than that I can't be woken up until noonish (the first time it happened, my mom was freaking out because even shaking me and shouting in my face didn't rouse me) and when I do wake up, I have a headache, have usually bitten my tongue, and just generally feel like crap. I don't get on here too often, and I don't recall what behavior problems you've posted about, but I would guess that if your dd is having her sleep disturbed by seizures every night, that could explain quite a range of behaviors. I'd be downright grouchy if I had to deal with that every night, and probably not very functional. If the meds stop the seizures, I'd guess you'd see a decrease in behaviors, though the meds themselves can cause quite a few new side effects, too. Quote Link to comment Share on other sites More sharing options...
Mergath Posted September 14, 2011 Share Posted September 14, 2011 Thanks, I got some more official information in the mail today, it is epilepsy officially... That would make sense. The way my neuro explained it to me was that the term "epilepsy" only means that you have a tendency to have seizures. It doesn't have anything at all to do with the type of seizures of the cause, so if a person has multiple seizures, they are epileptic, period. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted September 14, 2011 Share Posted September 14, 2011 First of all :grouphug:! It's going to be ok! There are lots of people who have epilepsy and have happy fulfilling lives. My son has had diagnosed epilepsy since he was around 3. He is now 12. He has been on many different medications. My son was on Keppra and it was not a good choice for him. That does NOT mean it won't be a good fit for your daughter. We are now on a combination that has very few side effects. He is taking Lamictal XR and Zonegran. He had been on Lamictal for many years. He took one dose in the morning and one in the evening. Ds was having major sleep disruptions and our doctor suggested switching the Lamictal to an extended release pill to only be given in the morning. He takes the Zonegran at night. It was amazing the difference just changing WHEN he took his medication. He has slept so much better ever since. I wrote all of that not to bore you with our lives but to show you that you may have to play around with dosages and medications before you find that good fit. I hope you find a great neurologist who can reassure you and help guide you through this new journey. Please keep asking questions if you need to! God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
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