Hello everyone,
My daughter is 14 yrs old, and began having grand mal seizures in her first year. They attributed it to fevers until a few happened w/o fevers. Then we noticed absence seizures. She had enough to where we ended up medicating her, which kept them from happening for many years. About 2-3 yrs ago, she started having partial seizures. They went on for a few months before we realized that's what they were, because they were just brief outbursts, and she just looked scared and yelled my name. Once I saw her hand get stiff, that clued me in that they might be some type of seizure. So we kept track of them, and the frequency, and her neuro medicated her for those with a different med, and they stopped. All along, the various MRI's, CT Scans, and other EEGs have all been "normal".
So now she's on Keppra and Trileptal (but the generic versions), and about a month ago we think she started having the partial seizures again. They doubled her trileptal, which stopped them mostly (we think) within a week. They told us that they want her to have a 3-5 day extended video-EEG in the hospital to see what they can find. My daughter also is non-verbal, and has ADHD (or ADHHHHHD as I like to call it ha), and has severe cognitive delays. I have a call in to her doctor to ask the following questions, and I wonder if they are legit questions to any of you who have been through this.
1. What is the danger of weaning her off of meds to increase the chance of having a seizure there? What if her seizures start to be uncontrollable? (I don't know what they can do in a hospital to stop a seizure?) This scares me.
2. All of her past tests have been "normal", and I was told once that some seizure activity can't be detected via an EEG because it's deeper than leads can detect. Why would this EEG have different results? If they don't detect EEG activity, are there more tests to do?
3. What will be done differently if they DO find seizure activity? Won't her current meds be enough?
Do those sound okay? Do any of you know the answers just from your experiences? Plus the COST... Omgosh, I think we are still paying for my labor and delivery with her. lol I am not looking forward to this bill.
Anyway, if anyone can help calm me down about this, I would appreciate it. Thank you for your time. I have to go get her from school, but I'll be back later! <3
My daughter is 14 yrs old, and began having grand mal seizures in her first year. They attributed it to fevers until a few happened w/o fevers. Then we noticed absence seizures. She had enough to where we ended up medicating her, which kept them from happening for many years. About 2-3 yrs ago, she started having partial seizures. They went on for a few months before we realized that's what they were, because they were just brief outbursts, and she just looked scared and yelled my name. Once I saw her hand get stiff, that clued me in that they might be some type of seizure. So we kept track of them, and the frequency, and her neuro medicated her for those with a different med, and they stopped. All along, the various MRI's, CT Scans, and other EEGs have all been "normal".
So now she's on Keppra and Trileptal (but the generic versions), and about a month ago we think she started having the partial seizures again. They doubled her trileptal, which stopped them mostly (we think) within a week. They told us that they want her to have a 3-5 day extended video-EEG in the hospital to see what they can find. My daughter also is non-verbal, and has ADHD (or ADHHHHHD as I like to call it ha), and has severe cognitive delays. I have a call in to her doctor to ask the following questions, and I wonder if they are legit questions to any of you who have been through this.
1. What is the danger of weaning her off of meds to increase the chance of having a seizure there? What if her seizures start to be uncontrollable? (I don't know what they can do in a hospital to stop a seizure?) This scares me.
2. All of her past tests have been "normal", and I was told once that some seizure activity can't be detected via an EEG because it's deeper than leads can detect. Why would this EEG have different results? If they don't detect EEG activity, are there more tests to do?
3. What will be done differently if they DO find seizure activity? Won't her current meds be enough?
Do those sound okay? Do any of you know the answers just from your experiences? Plus the COST... Omgosh, I think we are still paying for my labor and delivery with her. lol I am not looking forward to this bill.
Anyway, if anyone can help calm me down about this, I would appreciate it. Thank you for your time. I have to go get her from school, but I'll be back later! <3