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12 yr old son with BRE and very scared

Fri, 01/26/2007 - 17:58
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: Re: Re: Cheryl, I am not sure if my

Submitted by cbrownwesandsons on Wed, 2007-01-31 - 11:01
Hi Sheri, The MRI came back normal (thank goodness!). Bo is now up to six seizure free nights. I was on “pins and needles” though last night because he was very tired and cranky (he had trouble falling asleep the night before). Luckily no seizure. The unpredictable part of this whole thing is the worst! Hope all is well with Jack and I look forward to hearing how things go with the specialist. Take care, Cheryl

Re: Re: Re: Re: Cheryl, I am not sure if my

Submitted by jacksmom on Wed, 2007-01-31 - 12:24
Cheryl, I am so glad the MRI came back normal!!! Very exciting news. You are so right about the unpredictable part of this whole thing. You never know when its going to strike. Jack is doing good and I will keep you posted about the specialist! Have a great day, Sheri

Re: Re: Re: Re: Re: Cheryl, I am not sure if my

Submitted by cmarbrown on Fri, 2007-02-23 - 22:01
Hi Sheri, It's been awhile. How is Jack doing? Bo has not had any seizures. They seemed to stop as suddenly as they started. I stopped giving him strattera at bedtime (I switched to dinnertime). Who knows??? How did the appointment with the specialist go? Hope you got some good news! Take care, Cheryl

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