Hi, I am Phil. My daughter was diagnosed with e about 9 months ago. she's had 3 grand mals since and also has abences. She is 15. On Monday we go into the hospital of 4 days so they can do an extended eeg on her. She's already on Lamictal and Keppra and still is having the absences and had a tc only a month ago. She never wants to speak of any of this. Just keeps it all in. She was bumming about going in tonight. The first I've heard of her talk about the hospital stay. Yuck.
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epileric
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Hi Phil
and Welcome. Good luck with the EEG. I've had numerous ones since I was a little kid. When I was younger my seizures didn't show unless I was having one.
Look around & get comfortable and check out this thread, it might give you some ideas of how to prepare for your neurologist visit.
http://www.coping-with-epilepsy.com/forums/f23/new-neurologist-appt-week-5614/
and Welcome. Good luck with the EEG. I've had numerous ones since I was a little kid. When I was younger my seizures didn't show unless I was having one.
Look around & get comfortable and check out this thread, it might give you some ideas of how to prepare for your neurologist visit.
http://www.coping-with-epilepsy.com/forums/f23/new-neurologist-appt-week-5614/
Crazy Monkey
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Hi Phil
Welcome to CWE
It can be very difficult to talk about epilepsy as a teenager, because you don't want to feel different to everyone else and you don't want a fuss to be made because it can be embarrassing, so bear with her, she will open up when the times right. You've got to remember her whole world has just changed and she is finding her own way to deal with it.
My parents didn't speak to me about it, so therefore I never had to talk about it, which suited me just fine (a teenage thing). But obviously the more she talks about it, the easier it would be on her family to support her, so hang in there, when she needs you, she will indicate it.
I hope everything goes well with the eeg
Take care
The Crazy Monkey
Welcome to CWE
It can be very difficult to talk about epilepsy as a teenager, because you don't want to feel different to everyone else and you don't want a fuss to be made because it can be embarrassing, so bear with her, she will open up when the times right. You've got to remember her whole world has just changed and she is finding her own way to deal with it.
My parents didn't speak to me about it, so therefore I never had to talk about it, which suited me just fine (a teenage thing). But obviously the more she talks about it, the easier it would be on her family to support her, so hang in there, when she needs you, she will indicate it.
I hope everything goes well with the eeg
Take care
The Crazy Monkey
RobinN
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Hi Phil - my daughter had her first seizure at 14.
We had the first eeg which showed some activity (however I was told by another neuro that it might not have been seizure activity). We had another eeg that did not show anything, then another that was negative. Then we did a 24 hr VEEG, which did not show activity nor did she have a seizure.
I have since learned the power of nutrition and how it can effect neurological disorders of many types. Please keep in your mind that there is an underlying cause. Try to treat that instead of the symptoms. My daughter did not have seizures for the first 14 yrs of her life. I am trying to get her body back to a place of health, so that the symptoms no longer need to occur.
It is a hard age, but you have support here.
My daugher is 17 now.
We had the first eeg which showed some activity (however I was told by another neuro that it might not have been seizure activity). We had another eeg that did not show anything, then another that was negative. Then we did a 24 hr VEEG, which did not show activity nor did she have a seizure.
I have since learned the power of nutrition and how it can effect neurological disorders of many types. Please keep in your mind that there is an underlying cause. Try to treat that instead of the symptoms. My daughter did not have seizures for the first 14 yrs of her life. I am trying to get her body back to a place of health, so that the symptoms no longer need to occur.
It is a hard age, but you have support here.
My daugher is 17 now.
Hi, hello
and how do you do? It's nice to meet you, Phil.
CWE is chock full of great people, and tons of information. Check out all of the different rooms that you can find here, and you will be quite pleased, I'm sure.
Mr B, our host, has built us quite an AWESOME home here. Sit back, and kick up your feet. I'm sure Buckeye will be around with the coffee in a while. (His is far better than mine, I assure you--as is Eric's)
Sorry to hear about your daughter. I do remember being that age--and not wanting to talk about it, either. Then again, my mom was quite embarrassed about it herself, so that didn't help either. There are several teenagers/early twenties on the site, if I remember right, that if your daughter wants to get on here herself, that she could correspond with.....
Take care!
Meetz
:rock:
and how do you do? It's nice to meet you, Phil.
CWE is chock full of great people, and tons of information. Check out all of the different rooms that you can find here, and you will be quite pleased, I'm sure.
Mr B, our host, has built us quite an AWESOME home here. Sit back, and kick up your feet. I'm sure Buckeye will be around with the coffee in a while. (His is far better than mine, I assure you--as is Eric's)
Sorry to hear about your daughter. I do remember being that age--and not wanting to talk about it, either. Then again, my mom was quite embarrassed about it herself, so that didn't help either. There are several teenagers/early twenties on the site, if I remember right, that if your daughter wants to get on here herself, that she could correspond with.....
Take care!
Meetz
:rock:
skillefer
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Hi phil! Welcome to CWE. Not wanting to talk about it is not unusual in teens. Right now, she just wants to be accepted by her peers, and probably hates her seizures, thinks of herself as a freak, or thinks that having the seizure is darn unfair. It's anger and possibly denial that she is going through. You'll have to ride it out, I'm afraid. The best way to help her is to get educated about her condition, and then be there for her when she finally does decide to talk. Also, how you as the parent react to her seizures may highly impact how she feels about them and herself. If she wakes up to parents that are freaking out and panicy, she may end up feeling guilty and bad about her seizures and herself. If you try to make sure that you respond in a calm, laid back manner, she may think of it as not that negative a condition, and one that she can talk about more openly. She won't see talking about it as stressful on you.
carlasmoore
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Hi Phil,
I was also diagnosed at age 15 and it's not an easy road. Teenagers are already extremely stressed before obtaining a tag as "epileptic". Please try to focus more on what she can do, as opposed to what she is limited in doing. My mother was lovingly overprotective and I often did things just because she told me I couldn't. Let her know to pay close attention to her own body and feelings and take note of what happens when, that is her best way to feel her way through her broken road of life. People do understand and let those close know of the condition to begin with and not try to hide the reality of the condition. It's not easy but she'll come to realize it's not a death sentence, but a life challenge. Take care
I was also diagnosed at age 15 and it's not an easy road. Teenagers are already extremely stressed before obtaining a tag as "epileptic". Please try to focus more on what she can do, as opposed to what she is limited in doing. My mother was lovingly overprotective and I often did things just because she told me I couldn't. Let her know to pay close attention to her own body and feelings and take note of what happens when, that is her best way to feel her way through her broken road of life. People do understand and let those close know of the condition to begin with and not try to hide the reality of the condition. It's not easy but she'll come to realize it's not a death sentence, but a life challenge. Take care
Dear All,
Thanks for all the welcomes. We just finished 5 days of VEEG study. Ughh. Not easy but we made it through. They said my daughter DID NOT have any "siezures" but had interictal abnormalities on her tests. This is sort of good in that last time they said they saw "siezures". They want to push her up to 3-4 grams of Keppra from 2 in order to "knock it out". Man I hope this works. She has already failed to get any control from Lamictal so we don't want 2 failures. She is still on the Lamictal and they will take her off it once the Keppra is at the dose they want it at. Doctors say they are optimisitic. Me, I am not so sure. They also said she is light sensitive so we're gonna try to get her those specical sun glasses. Its gonna be a long summer but maybe by September we will be under control. That's the update for now. Thank you again all for you kind notes.
Phil
Thanks for all the welcomes. We just finished 5 days of VEEG study. Ughh. Not easy but we made it through. They said my daughter DID NOT have any "siezures" but had interictal abnormalities on her tests. This is sort of good in that last time they said they saw "siezures". They want to push her up to 3-4 grams of Keppra from 2 in order to "knock it out". Man I hope this works. She has already failed to get any control from Lamictal so we don't want 2 failures. She is still on the Lamictal and they will take her off it once the Keppra is at the dose they want it at. Doctors say they are optimisitic. Me, I am not so sure. They also said she is light sensitive so we're gonna try to get her those specical sun glasses. Its gonna be a long summer but maybe by September we will be under control. That's the update for now. Thank you again all for you kind notes.
Phil
onder:. 
Ruth
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Hi Phil
Welcome, we are glad to have you here. You will learn a lot of things here.
I was diagnosed at 6 years of age. I am 66 now. My parents never talked about it. Even though it was inherited, it was hush-hush. I think the more she opens up to you the better.
Welcome, we are glad to have you here. You will learn a lot of things here.
I was diagnosed at 6 years of age. I am 66 now. My parents never talked about it. Even though it was inherited, it was hush-hush. I think the more she opens up to you the better.
Rhea
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Hi Phil, and welcome. I am new here also and new to E. I am learning QUITE a lot from this forum and the helpful, understanding people here. My daughter is 16, and also has a hard time even acknowledging that mom has seizures. So, just bear with her, listen when she needs it, and help her adjust and be as much like her friends lives as possible. It's hard to be "different" especially at that age. Hopefully she will open up and learn that her life is quite full even with E.
Hi and welcome
E takes a lot of time to accept, but if the doctors have a clear diagnosis, it's less confusing for all involved, especially your daughter. I hope she knows about this place, and in time can access it on her own as she gets closer to acceptance and wants to learn from others with E. I had onset of complex partial seizures at age 29 and now i am 31, and I really accept it, and ask my family to help me with it! So, pride, fear, uncertainty, and wanting to not deal with it are all barriers. I wish my family would ask about my symptoms more, but i think they feel helpless because they want to fix it. Hopefully she has some good friends that will stick by her too--that's the most important thing, to know that she is accepted and liked by not only her family, but her peers too!
E takes a lot of time to accept, but if the doctors have a clear diagnosis, it's less confusing for all involved, especially your daughter. I hope she knows about this place, and in time can access it on her own as she gets closer to acceptance and wants to learn from others with E. I had onset of complex partial seizures at age 29 and now i am 31, and I really accept it, and ask my family to help me with it! So, pride, fear, uncertainty, and wanting to not deal with it are all barriers. I wish my family would ask about my symptoms more, but i think they feel helpless because they want to fix it. Hopefully she has some good friends that will stick by her too--that's the most important thing, to know that she is accepted and liked by not only her family, but her peers too!