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12 yr old son with BRE and very scared
Fri, 01/26/2007 - 17:58Topic: Parents & Caregivers
My 12 yr old son was diagnosed with BRE 3 1/2 years ago. His EEG came out normal, but his symptons were classic for BRE. He had infrequent and mild sezuires (one side of his face would twitch, his mouth would open and close, he would drool and he couldn't talk, after his speech was slurred for awhile). He had a second EEG a few months ago and it still came out normal. We have never medicated because the DR said the seizures wouldn't hurt him and he would grow out of it.
Last week, however, he started having a seizure every night and one night he had two (20 minutes apart). They always seem to happen 30 minutes after he falls asleep. The seizures are now more scarey as well as nightly. He makes a choking sound and remains lying down (whereas in the past he would sit up). Now the entire side of his body is convulsing. He still drools and his speech is slurred after the seizure ends. I am so worried that he can't breath while this is happening because of the choking sounds, although his DR tells me he can breath. I really can't see how! Does anyone else have experience with this? Are there dangers the doctor is not telling me about?
The DR says it may be time medicated. When I asked him why (since he's assured me that the seizures are not dangerous), he said for "social issues", such as sleepovers.
Although my son says the seizures don't hurt or scare him, he is now afraid to go to sleep. Maybe he's picking-up on my fear. I'm so worried that he'll have a seizure and choke to death (certainly not a fear I've shared with my son).
Also, my son has been on Strattera for the past few years for ADHD. I asked the DR if this could be contributing to the situation and he says no, however, there is a seizure warning with Strattera. Anyone else have experience with Strattera and seizures?
Sorry about babbling on..but I've been a wreck for the past week.
Cheryl
Comments
Re: Cheryl, I am not sure if my
Submitted by cbrownwesandsons on Sun, 2007-01-28 - 16:37
Hi Sheri,
Day 28..that’s great! Yes we have now had three seizure free nights. I’m beginning to think the string of nightly seizures was due to a lower threshold from a cold he was fighting; who knows!
I do know that lack of sleep is a trigger and now maybe illness. My son (Bo), is rarely sick, so maybe we never noticed that as a trigger.
Have you noticed any connection between lack of sleep or illness and the occurrence of your son’s seizures?
I did ask our ped. Neurologist if there was something to use in case of an emergency (similar to an epipen (sp?) for allergies) and he said yes, but it could cause respiratory arrest and given the fact that Bo’s seizures only last a minute or so, he didn’t feel our situation warranted the risk. It does seem that a lot of people have the diastat as a precaution. Did your doctor say there was a risk to using it?
How was your son diagnosed with BRE? From an EEG? It sounds like his seizures are more severe than the typical Rolandic seizures. It’s a great idea to get a second opinion from an epileptic specialist. Please let me know how it goes.
I didn’t question Bo’s diagnosis originally since his seizures were classic for BRE and infrequent in occurrence. I assumed the EEG’s came out normal because we didn’t “sleep deprive†him enough or his case was really mild. I did insist last week that he have an MRI and we’re still waiting for the results.
Thanks again for your help. I hope you’re on day 29 now..only a few more days to pass the one month mark!
Take care and keep in touch.
Cheryl
Re: Re: Cheryl, I am not sure if my
Submitted by jacksmom on Sun, 2007-01-28 - 21:23
Hi Again,
I'm glad to hear your son Bo was seizure free last night! Every day they don't have a seizure, you feel a little less stressed don't you?
We think my son's second and third seizure was due to lack of sleep. It was over Christmas break and we were up late many nights and he was excited about the holidays so he wasn't sleeping great. This was before we knew that sleep deprevation could play a role in having a seizure. I have also heard about sickness being a trigger. My son also doesn't get sick that often so we haven't experienced that one yet. Don't you just want to put your kid in a bubble sometimes? ha
Jack was diagnosed through an EEG test. He was sleep deprived the night before with only 3 hours of sleep. I will let you know what the specialist says when we go next month to see him.
I hope the MRI will give you some clues as to what it is. Your son's case does sound like the classic symptoms of BRE so maybe it was just because he wasn't feeling good. You'll have to let me know what they say about the MRI. I will keep my fingers cross that it's all good news!!!
Have a great evening,
Sheri
Cheryl, I am not sure if my
Submitted by jacksmom on Sun, 2007-01-28 - 00:52
Cheryl, I am not sure if my son's symptoms are classic or not of BRE. I know when we went to the ped. neurologist he kept telling us about the twitching of the face and drooling. He has not had any face twitching. His first seizure was a grand mal (now they call it a tonic clonic). He was screaming and moaning and we ran up to his room and found him in a full seizure, convulsing and totally unresponsive. The second one a month later was the same but only lasted about 1 minute and the third one two days later was upon waking and only half his body was convulsing, while the other side was stiff. He had not remembered the first two at all. He only remembered when he was coming out of them hearing our voice. The one he woke up to, he remembered and was very frightened by it. I don't think he had really got the concept of what a seizure was up until that point. It was extremely hard for me to see him so scared. He slept with us for a few nights after that one but then he felt comfortable enough to go in his bed. I am only now starting to somewhat relax at bedtime and getting him up in the morning. Although the other night he was coughing strangly about a half hour after he went to bed and I ran up stairs and just panicked. I of course thought the worst and that he was having a seizure, but he was fine, just coughing in his sleep. So I understand your fears. I do think about these seizures and it severely hurting or killing my son but you cannot let it consume you. I educated myself as much as I could. Take a CPR class or refresh yourself, make sure you have the phone with you so you can call 911 if needed. All these things have helped me cope and I hope and pray that if he was ever in a life or death situation God would give me the strenghth to help him. Now that your son has had more seizures, I would definately seek a second opinion. It never hurts and with his EEG coming back normal, I would want more answers as to why this is occuring. (Thats just what I would do) I am so excited that your son has had two seizure free nights (hopefully three now). My son is on day 28 and my hope is we make it past a month because he had his second seizure one month after his first so if we can pass that I will be so excited. Take care and I hope you son has seizure free weekend! Sheri (Jack's mom) Oh, one more thing...Did your doctor give you a prescription Diastat (a rectal valium)? It's something you can administer if your son is having a seizure lasting longer than 3 minutes. Just something that our doc gave us and it's reassuring if we need to use it (I hope we wont need it).