No one realized it was seizures...

Awwww Jamie.. Please, don't be so hard on yourself. Is it your fault? No! Will self-blame accomplish anything? No! So please, please, do NOT feel guilty. You being here to help your daughter shows that you ARE a great Mom & you DO care. Having had E since age 3, I was (long ago) in your daughter's position so take it from one who had been there; For now, her biggest need from her Mom is to feel loved. (Of course you will work to try to get her controlled and 75% of those with E are completely controlled via meds). BUT, while she is going though this, she needs your love and understanding more than most, as epilepsy has psychological effects (her inner fear, confusion and not telling you what she was experiecing is one obvious example of the immense character impact of childhood E) My medical advice, since you say she's been diagnosed as having E, would be to take her to an epileptologist (= a neurologist that has special training in, and who focuses on, the over 40 types of E). A general neurologist (a brain and spine specialist) isn't as knowledgeable about E, due to not focusing on only that area. Keep a diary re: the meds and your daughter's behaviourial reactions. Note when seizures occur and you may see a 'pattern' emerge. (Most people have triggers.. not enough sleep and flahing lights are HUGE triggers = why during EEG testing they flash lights or; if staying in the hospital for testing, they often purposely sleep deprive people) Finally, if you know what type of seizures your daughter has, you can read more about them, and other accurate medical info, (put online by US physicians) on www.epilepsy.com. Please, come to chat some evening. You'll meet other caring mothers, and people with E. Then you won't feel so alone and will likely make friends who can relate to what you are experiencing. Wishing both you & your daughter the best, ~sol

Hi Jamie I'm so sorry about your daughter and the emotional impact on your family. I know about it, I'm there as well. My son, 5 1/2, had his first "noticed" seizure 8 weeks ago (If I wasn't looking at him at that precise second, I would have missed it again!). He's been put through numerous tests, and in the end diagnosed with Juvenile Myoclonic Epilepsy. And put on medication. And suddenly we realised that all the times he fell down, and made it into a joke, wasn't a joke. The times he watched tv so intently, wasn't the tv that had his attention. How many thousands of times did we miss his seizures? Even his teacher is guilt ridden! I think it's normal for us to feel like that, because they're defenseless. And they don't understand what's happening. Probably thought everyone experienced things like they did. And our hearts break for them. But, as long as you're there now. That's all that's important now. You're already on the right path, being here, looking for information and support. Tell yourself that you may have missed things in the passed because you didn't have all the information, but now, in the future, you'll be there, and you'll help and support her all the way. Good luck, and take care! Essie (mom to Nian(5) and Meonie(3))

Jamie, I just responded back to you on a post that you left for me. (Throat Pain). I forgot to mention that my daughter was labeled apathetic, and unmotivated by her teachers, and not living up to her potential. After many tests by speech therapist, psychologist, and her pediatrician, they labeled her with ADD, inattention type. I never felt right about the diagnosis. It just did not seem that ADD could come and go so quickly. WELL, NOW we know what was really happening. Lori