Good morning! I have done a little bit of posting here in this wonderful forum, and learned a lot, but never gotten around to introducing myself. So here goes!
My 15-year old daughter suffered her first known seizures about 6 weeks ago. She had 3 t-c seizures - the first one by herself in her room when I was out of the house (she woke up on the floor very confused and upset - I thought she had fainted, and we only figured out it must have been a seizure after the other incidents); the second time I heard a crash from upstairs and found her in the bathroom having a t-c; the third happened in the ambulance on the way to the hospital. That third seizure started with a fixed stare, sharp head turn to the right and grimace before generalizing into another t-c seizure - based on my description they diagnosed her with complex partial seizures, probably temporal lobe. Her EEG (18 hours after her seizure) and MRI were normal. She is now taking 1500 mg Keppra daily.
I feel very blessed and lucky that Keppra has been controlling her seizures very well so far. She did have some "episodes" early in her treatment that I think were probably partial seizures, but they have stopped. She has experienced some side-effects from the Keppra - mostly lightheadness, mood swings & some anxiety issues - but she has been able to deal with them without too much difficulty.
But despite the fact that we have gotten good seizure control very quickly, the whole experience has been difficult and life-changing, to say the least. She did deal with some issues with migraine and anxiety last year (due primarily to attending a high school that was a bad choice for her - the symptoms disappeared when we changed schools), but is generally healthy and active. She is a very serious ballet dancer, and takes ballet class 12 1/2 hours a week at the company school in our city, attends a prestigious magnet school, has tons of friends, etc. At some level it just seems inconceivable that she could have developed epilepsy.
I would love to connect with other parents of teens, particularly ones with a new diagnosis. It is so challenging to balance my concern and worry for her with her need for independence. And I think it is so challenging for them to navigate the process of self-discovery and self-definition while also dealing with epilepsy - with the condition, the fear, the medication, the side-effects, etc. I do feel blessed that we have an excellent pediatric epilepsy program at our hospital (CHOP), and I have been so impressed with our neurologist. He listens, he responds, and my daughter likes him (which is not always easy!).
Thank you for listening! I am the kind of person who likes to understand things - which also makes epilepsy particularly challenging LOL! - so I will probably have lots of questions!
My 15-year old daughter suffered her first known seizures about 6 weeks ago. She had 3 t-c seizures - the first one by herself in her room when I was out of the house (she woke up on the floor very confused and upset - I thought she had fainted, and we only figured out it must have been a seizure after the other incidents); the second time I heard a crash from upstairs and found her in the bathroom having a t-c; the third happened in the ambulance on the way to the hospital. That third seizure started with a fixed stare, sharp head turn to the right and grimace before generalizing into another t-c seizure - based on my description they diagnosed her with complex partial seizures, probably temporal lobe. Her EEG (18 hours after her seizure) and MRI were normal. She is now taking 1500 mg Keppra daily.
I feel very blessed and lucky that Keppra has been controlling her seizures very well so far. She did have some "episodes" early in her treatment that I think were probably partial seizures, but they have stopped. She has experienced some side-effects from the Keppra - mostly lightheadness, mood swings & some anxiety issues - but she has been able to deal with them without too much difficulty.
But despite the fact that we have gotten good seizure control very quickly, the whole experience has been difficult and life-changing, to say the least. She did deal with some issues with migraine and anxiety last year (due primarily to attending a high school that was a bad choice for her - the symptoms disappeared when we changed schools), but is generally healthy and active. She is a very serious ballet dancer, and takes ballet class 12 1/2 hours a week at the company school in our city, attends a prestigious magnet school, has tons of friends, etc. At some level it just seems inconceivable that she could have developed epilepsy.
I would love to connect with other parents of teens, particularly ones with a new diagnosis. It is so challenging to balance my concern and worry for her with her need for independence. And I think it is so challenging for them to navigate the process of self-discovery and self-definition while also dealing with epilepsy - with the condition, the fear, the medication, the side-effects, etc. I do feel blessed that we have an excellent pediatric epilepsy program at our hospital (CHOP), and I have been so impressed with our neurologist. He listens, he responds, and my daughter likes him (which is not always easy!).
Thank you for listening! I am the kind of person who likes to understand things - which also makes epilepsy particularly challenging LOL! - so I will probably have lots of questions!
