One week from today, Seth and I will travel to Children's for his admission for long-term EEG monitoring. His stay could range from three to five days, depending on how quickly they are able to capture the information needed. The goal is for Seth to have at least one seizure during his stay so they can observe and evaluate information about what happens to Seth's brain when he has a seizure. In order to increase the chances that he will have seizures during his stay, we have a medication tapering schedule that we started tonight. The plan is to gradually decrease his medication each day this week, so that by the time he is admitted, he will be taking considerably less medication than normal in hopes of bringing on a seizure. They will also use sleep deprivation to try to induce seizure activity while he is hospitalized.
Logically I understand why this is necessary, but it's hard to withhold medication that I know Seth needs, and send him off to school knowing that he is at an increased risk and I can't protect him. My worrying gene is in high gear, and I'm sure it will be putting in plenty of overtime the next couple weeks. One of my fears is that he will start having more seizures this week, we will have to bump his meds back up, and then by the time we go for his admission they won't be able to record any seizure activity. Please say a prayer for Seth that all goes as planned and we can get the information we need to make the best decisions about his treatment.
Monday, February 27, 2012
Sunday, February 26, 2012
A Little History
I decided to start a blog to help keep family and friends up to date, increase epilepsy awareness and to connect with other families who live with similar experiences. We have been blessed with a wonderful support system to help us through the rough spots. This is our story.
Our middle son, Seth, was diagnosed with epilepsy in the Summer of 2007 after having his first seizure and undergoing EEG and MRI testing. We discovered that Seth has scar tissue in one area of his brain, which was believed to be the cause of the seizures. The cause of the scar tissue is unknown, as Seth has never had a brain infection or injury. This could have been caused by a lack of oxygen at birth, or it may just be how his brain developed in utero. Seth was started on medication and continued having breakthrough seizures every time he would become ill or get a fever. Each time this would happen, his medication would be increased. Eventually, a second medication was added and he remained stable for a time, but it was not sustained and Seth began to have seizure activity again. These were scary and frustrating times.
Currently, Seth takes three different medications twice daily and continues to have seizures. For this reason, we asked our neurologist for a referral to Nationwide Children's Hospital in Columbus, where Seth was seen for an initial evaluation in early February of this year. We were given huge amounts of information, and the neurologist explained to us for the first time that Seth's EEG and MRI show conflicting information, so this is puzzling to them. By looking at his MRI, it would appear that Seth's seizures originate from the area in his brain that has scar tissue. However, when they look at his EEG, it shows generalized seizure activity all over his brain and not just originating from the scarred area. It was recommended that Seth be scheduled for long term EEG monitoring, which would involve a three to five day hospital stay with video EEG monitoring in order to try to determine the cause of Seth's seizures. By determining whether his seizures are organically caused, due to the scarred area in his brain, or genetic, we can better determine a course of treatment. If it is confirmed that Seth's seizures are organic, he may be a candidate for brain surgery which could potentially stop his seizures. If genetic, he only has a 1-2% chance of ever being seizure free. It's a bit hard to swallow those odds, but we have started this ball rolling and we are determined to continue to move forward.
Our middle son, Seth, was diagnosed with epilepsy in the Summer of 2007 after having his first seizure and undergoing EEG and MRI testing. We discovered that Seth has scar tissue in one area of his brain, which was believed to be the cause of the seizures. The cause of the scar tissue is unknown, as Seth has never had a brain infection or injury. This could have been caused by a lack of oxygen at birth, or it may just be how his brain developed in utero. Seth was started on medication and continued having breakthrough seizures every time he would become ill or get a fever. Each time this would happen, his medication would be increased. Eventually, a second medication was added and he remained stable for a time, but it was not sustained and Seth began to have seizure activity again. These were scary and frustrating times.
Currently, Seth takes three different medications twice daily and continues to have seizures. For this reason, we asked our neurologist for a referral to Nationwide Children's Hospital in Columbus, where Seth was seen for an initial evaluation in early February of this year. We were given huge amounts of information, and the neurologist explained to us for the first time that Seth's EEG and MRI show conflicting information, so this is puzzling to them. By looking at his MRI, it would appear that Seth's seizures originate from the area in his brain that has scar tissue. However, when they look at his EEG, it shows generalized seizure activity all over his brain and not just originating from the scarred area. It was recommended that Seth be scheduled for long term EEG monitoring, which would involve a three to five day hospital stay with video EEG monitoring in order to try to determine the cause of Seth's seizures. By determining whether his seizures are organically caused, due to the scarred area in his brain, or genetic, we can better determine a course of treatment. If it is confirmed that Seth's seizures are organic, he may be a candidate for brain surgery which could potentially stop his seizures. If genetic, he only has a 1-2% chance of ever being seizure free. It's a bit hard to swallow those odds, but we have started this ball rolling and we are determined to continue to move forward.
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