Thank you for the response. I felt like I was stronger and that I could deal with it until the doctor told us the extent of her E. I just feel like I need to do something to feel more in control of it. I have been reading alot more online (and thats hard to do because I used to get on everyday anyway to google up and stuff). I just feel overwhelmed with it all. I know what you about having them break it down in kindergarten style. I kept asking him the question again until he would answer in a way that I would be able to remember it. You know I felt like I left there with little information just because I didn't retain it well since I was so upset by it all. I feel bad for getting upset about it though. i don't know. Thank you for telling me that we were given these gifts, that really does give me another way to look at it. My husband told me that it's nothing that we can't deal with and that we will get through it and make sure that she has the best life possible. Which I know we will. I just am grasping for answers and cures that I know aren't there. And the fact that the medicine is all trial and error really drives me nuts. I hate the unknown. I hate not knowing when a seizure is going to happen... The doctor told me last night that the seizures are happening when she is falling asleep and waking up as well, so now I lay awake at night wondering if she is having one or not. I'm going to drive myself crazy.

Thank you again!!
Emily

Thank you so much!! You really have helped me. I think I will tell her Nana to read online and get some information. It just bothers me so much how people act when they here the word Epilepsy. I think that's why the diagnosis is harder to hear too, to know that people don't understand and aren't caring when it comes to that. I just feel like no one cares. It helps that we have a caring doctor though for the first time ever. I know of 2 other people in our family, one from my side and one from my husbands side who have had atleast one seizure and one who was diagnosed with Epilepsy. I'm sure theres another link there. It makes me worry for my son now too... I am going to be a basketcase! Another sad attempt that the doctor would tell us that everything was fine, I didn't tell him that she has been having these weird things where she tells us that she doesn't feel well... but then he told me that she had the constant activity and well I figured I'd might as well tell him that... horrible I know. Thanks again for the response!! I will be thinking about you as we go through everything with her. You have helped me alot.

Take care!!
Emily

Of course I will hold your hand in this. How long has your son been in the hospital? I know what you mean about falling apart. Kaitlyn started having seizures back in March and I have been holding onto the hope since than that everything would come back fine. I guess I should have known. Can your son drive if he hasn't had any seizures in 6 months though? I can only imagine what it's like to have a teenager going through it all, and the disappointment that he feels too.

I lost it once we walked out of the doctors office and everytime that I had to tell someone what we were told.

And now... just thinking about it...

I feel your Pain!  My son is 17, in March I was getting ready for work one day during the kids spring break and heard a noise coming from his room..I went in to check because it was spring break-why would he be up.  I walked in to find him convulsing on his bed, biting his bottom lip and making the most horrible breathing sound I've ever heard. I am an RN and I fell apart.  All the seizure nursing 101 went out the window.  He was taken to the hospital and put on Keppra.  It's been two months and nothing!  All of his tests were negative.

Then Sunday morning-at 3am my husband woke me up and he was having another seizure.  Not as long this time (we think).  His seizures so far have only happened in his sleep.

Last night my son said to me "I'm not going back to that doctor, I didnt have another seizure, I'm fine".  Not driving has REALLY took a toll on him. I think it bothers him a lot worse than he  admits to me.  Just went to prom with his girlfriend driving.  I think had he not had his license to begin with then taken away, it wouldn't make him feel so bad about it.  I mentioned buying a seizure monitor and he about lost his mind.  He is absolutely against it and said if I buy it he will unplug it when I leave the room.  I know he just wants his privacy and feels so much has already been taken away from him, but I know nocturnal seizures are VERY dangerous and I don't want my son to be the 1 out of 3000 who die from a nocturnal seizure.  I don't know how to help him if he wont admit there is a problem and help us help him!

He is going to college next year which is a whole other problem..he has Forever wanted to be a pilot and take aeronautical engineering in college--and he is brilliant.  Has the ACT, SAT scores to go ANYWHERE! My first fear is for him-I honestly think that dream is gone-he can't get a pilot license now, Can he??? Will a college accept him to that program with a seizure disorder?  Unfortuantely, I hear how the diagnosis of epilepsy can follow him his whole life and keep him from persuing things he has dreamed of forever. 

My second fear is, no colleges in my state have that major so he is looking out of state.  I'm so scared he will have a seizure in a dorm room and no one will be there to help him. 

I feel like everything is just falling apart around me.  As a parent, I want to fix it-and unlike giving him antibiotics for an infection...I can't just make this go away!