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12 yr old son with BRE and very scared

Fri, 01/26/2007 - 17:58
Topic: 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: 12 yr old son with BRE and very scared

Submitted by jacksmom on Sat, 2007-01-27 - 17:15
Hi Cheryl, My 7 year od son was also diagnosed with BRE about 2 months ago. He has had three tonic clonics. I know how scared you must feel. My son was also afraid to sleep in his bed as two of his seizures happened within the 1st hour of going to bed and one happened upon waking up in the morning. The choking sound, from what I have been told is normal. My son makes a terrible screaming sound like he is having a bad nightmare. It is terrifing to hear your son making that sound. We put a baby monitor back in his room so we could have the comfort of knowing we could hear him if he started having a seizure. Have you tried that? It might give him peace of mind to know that you will be able to be right there for him in case of a seizure. We do not have our son medicated yet but the neurologist did tell us if he was having trouble sleeping or became extremely nervous about the seizures that we could put him on Trileptal at bedtime. I have done some research on that med. and it seems to be the one with the least amount of side effects. I believe they also don't have to do constant blood work ups with that med. (don't quote me on that though). As far as the ADHD meds, I really don't know anything about those. I am sorry about that and hope that someone else out there can help you with that question. I hope you find out some more answers, as I know how frustrating it is for you right now. Have you tried taking your son to an epileptic specialist? We took our son originally to a ped. neurologist and now we are taking him to a epileptic specialist next month for a second opionon. I have heard great things about them and maybe they could give you more answers to your questions. Take care and I will be thinking about you and your son. Keep me posted. Sheri (Jacks mom)

Re: 12 yr old son with BRE and very scared

Submitted by emilymylove on Wed, 2008-02-13 - 19:35

Don't skip the blood work on Trileptal.  Our daughter has BRE and was put on Trileptal last June.  Dr. did not do recommended blood work.  One month later she got a rash...then fever....then diarrhea....after three weeks her liver was beginning to shut down.  Dr. kept telling us it was a virus but she was in fact having a severe allergic reaction to Trileptal (reference page 13 of the supporting documentation for Trileptal).  It was a terrifying experience culminating in her spending 12 days in ICU including 3 on a ventilator.  The only way to stop the reaction was with mass doses of steriods.  The side effects from the steroids have been difficult, but we had not other choice to save her life.

Her reaction was rare for sure, but I just don't want this to ever happen to anyone else.  Good luck.

Don't skip the blood work on Trileptal.  Our daughter has BRE and was put on Trileptal last June.  Dr. did not do recommended blood work.  One month later she got a rash...then fever....then diarrhea....after three weeks her liver was beginning to shut down.  Dr. kept telling us it was a virus but she was in fact having a severe allergic reaction to Trileptal (reference page 13 of the supporting documentation for Trileptal).  It was a terrifying experience culminating in her spending 12 days in ICU including 3 on a ventilator.  The only way to stop the reaction was with mass doses of steriods.  The side effects from the steroids have been difficult, but we had not other choice to save her life.

Her reaction was rare for sure, but I just don't want this to ever happen to anyone else.  Good luck.

Re: Re: 12 yr old son with BRE and very scared

Submitted by cbrownwesandsons on Sat, 2007-01-27 - 18:24
Hi Sheri, Thank you for your compassionate response. I have considered a baby monitor but my son’s room is close and with both of our doors open I can hear every little sound he makes. At this point I jump at every noise I hear and I’m not sure my nerves can take it if I intensify the noises with a monitor. On the other hand, I do worry I won’t wake up should he have a “quit” seizure. We have been seeing a pediatric neurologist as well, and I didn’t know that there were doctors that specialized in epilepsy until I joined this site. Now that I know, I’m going to look into it. I find it strange that my son’s EEG was normal. I searched the site and everyone seems to report abnormal EEG’s as part of the BRE diagnosis. I also searched the site for hours to see if anyone else has experience with using strattera and found nothing. I have to believe it lowers his threshold since there is a warning with the medication about seizures; but enough to stop.....I don’t know. I am so sorry about your son. Does your son have the classic symptoms of BRE such as mouth twitching on one side, drooling etc. with memory of the event later? I’m not sure what you mean by tonic clonics? I’m not really sure how to classify the seizures my son has been having. The episodes still involve the “classic” symptoms, however, his body now convulses (although it may actually be only one side, but it’s hard to tell). Hearing your son screaming must wrench your heart! I know the loud choking sounds my son now makes during a seizure scares me more than anything. I hadn’t considered the possibility of a seizures upon waking until I read some other experiences. That must make the situation even tougher! At least after my son is asleep for an hour, I feel like we’re in the clear for the night (although I have been waking up very early the last few mornings unable to go back to sleep..so maybe I’m not so sure anymore). I know this may sound like a stupid question but I’m going to ask it anyway. I think my fear mainly comes from the fear that a seizure could kill my son. Do you have the same fear? Thank you so much for your compassion and sharing your experiences. Please keep in touch. By the way, we had two seizure free nights in a row. I never thought I would be thrilled about that! Cheryl

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