Hi everyone,
I am relatively new to this whole diagnosis and am feeling very frustrated and confused after my son's last appointment. I will try to give you a summary of what we have experienced over the past year (sorry if it's long!), and I would love to hear any advice you could offer.
My son experienced a prolonged staring episode (30 seconds) in mid-March, 2012. He was completely unresponsive to his name or to cold (he had been pouring a cold drink at a time...it was running over his hand and he didn't even flinch). Pediatrician ordered a one hour sleep deprived EEG - it showed epileptiform activity in his left temporal lobe. We followed up with a neuro who diagnosed him with partial complex seizures. He began Keppra in April. Before going on the Keppra, we noticed additional episodes of prolonged staring - some also included motor involvement, such as rapid blinking and tongue thrusting. None lasted more than 20-30 seconds.
After being on Keppra for a few months, the neuro repeated the one hour sleep deprived EEG in August - normal. We continued with the Keppra and he was seizure-free until September. In mid-September, we noticed a couple of staring episodes where he also dropped whatever he was holding at the time (e.g., fork, pencil). His teacher also reported a 20-second episode at school where he was completely unresponsive to his name. Took him back to the doctor - increased his Keppra to 375 mg 2x/day and the seizures stopped.
We did decide to switch doctors, as the first neuro seemed very rushed and never did a good job of answering our questions. Saw a new doctor in mid-October. He ordered a 24 hour EEG, which we had done in November. We went back to the doctor last week for the results/follow up - he told us that the EEG had been normal and that our son does not have epilepsy. He gave us a schedule to begin decreasing his Keppra over the next 12 weeks. We asked a ton of questions, because this obviously took us by surprise - he was very evasive. For example, we asked what the staring episodes were if they weren't seizures. We asked how he could go from having an abnormal EEG to a normal one in eight months. We asked if the EEG might only be normal because of the medication. His only response was that he couldn't explain the episodes or the change in the EEG - but that there was a whole team of professionals who read the EEG and concurred that he was perfectly fine. He insisted that the Keppra had nothing to do the with normal EEG - if there was a problem, the EEG would have picked it up, whether he was medicated or not.
So...I feel we are back to square one. We have started lowering the Keppra as directed, but I feel so uncomfortable with that. I have read in many places that EEG's can be normal, even in children with epilepsy....but how can I argue with the doctor who is telling me that he and six other experts are certain my son is fine????
Any thoughts or advice would be GREATLY appreciated. I just feel completely lost right now...
Thank you all!
Angela
I am relatively new to this whole diagnosis and am feeling very frustrated and confused after my son's last appointment. I will try to give you a summary of what we have experienced over the past year (sorry if it's long!), and I would love to hear any advice you could offer.
My son experienced a prolonged staring episode (30 seconds) in mid-March, 2012. He was completely unresponsive to his name or to cold (he had been pouring a cold drink at a time...it was running over his hand and he didn't even flinch). Pediatrician ordered a one hour sleep deprived EEG - it showed epileptiform activity in his left temporal lobe. We followed up with a neuro who diagnosed him with partial complex seizures. He began Keppra in April. Before going on the Keppra, we noticed additional episodes of prolonged staring - some also included motor involvement, such as rapid blinking and tongue thrusting. None lasted more than 20-30 seconds.
After being on Keppra for a few months, the neuro repeated the one hour sleep deprived EEG in August - normal. We continued with the Keppra and he was seizure-free until September. In mid-September, we noticed a couple of staring episodes where he also dropped whatever he was holding at the time (e.g., fork, pencil). His teacher also reported a 20-second episode at school where he was completely unresponsive to his name. Took him back to the doctor - increased his Keppra to 375 mg 2x/day and the seizures stopped.
We did decide to switch doctors, as the first neuro seemed very rushed and never did a good job of answering our questions. Saw a new doctor in mid-October. He ordered a 24 hour EEG, which we had done in November. We went back to the doctor last week for the results/follow up - he told us that the EEG had been normal and that our son does not have epilepsy. He gave us a schedule to begin decreasing his Keppra over the next 12 weeks. We asked a ton of questions, because this obviously took us by surprise - he was very evasive. For example, we asked what the staring episodes were if they weren't seizures. We asked how he could go from having an abnormal EEG to a normal one in eight months. We asked if the EEG might only be normal because of the medication. His only response was that he couldn't explain the episodes or the change in the EEG - but that there was a whole team of professionals who read the EEG and concurred that he was perfectly fine. He insisted that the Keppra had nothing to do the with normal EEG - if there was a problem, the EEG would have picked it up, whether he was medicated or not.
So...I feel we are back to square one. We have started lowering the Keppra as directed, but I feel so uncomfortable with that. I have read in many places that EEG's can be normal, even in children with epilepsy....but how can I argue with the doctor who is telling me that he and six other experts are certain my son is fine????
Any thoughts or advice would be GREATLY appreciated. I just feel completely lost right now...
Thank you all!
Angela