Taylor's presentation to Dr. Dulac was this morning. I've never seen so many doctors in one room, all eyes on my little girl. Dr. Sarnat had given him her history beforehand, then Dr. Dulac took some time observing Taylor and examining her before he said anything. He came across very warm, very gentle.
Taylor's been on Topomax since August and based on the EEG from 2 days ago, it's not doing anything to control the seizures, so Dr. Dulac's recommendation...medication wise...was to wean her off it. We had already started to wean her off the Sabril, but his suggestion was to actually bring it back up and increase the dose slightly. All the information that we previously had about Sabril was that it was to be used short term because of the side effect of toxicity to the retina, causing peripheral vision loss. He indicated that those side effects were more to do with adult patients, not children. Further, it was beneficial to give it once a day, in the evening just before bed, rather than twice a day as we had been. Reasoning being that the drug would work its way through the bloodstream over the next several hours while it's dark and her eyes are closed, but it still acted as an anti-convulsant for up to 48 hours. If this change doesn't have any effect on the number of seizures over the next few weeks, his next suggestion is steroid treatment.
Dr. Dulac stressed that the most important thing is to get the seizures under control, because the next high risk period is 2-3 years of age, a time where there is such an incredible amount of cognitive development. Such frequent seizure activity is hindering Taylor's ability to develop, so seizure control has got to be the focus.
Taylor's been on Topomax since August and based on the EEG from 2 days ago, it's not doing anything to control the seizures, so Dr. Dulac's recommendation...medication wise...was to wean her off it. We had already started to wean her off the Sabril, but his suggestion was to actually bring it back up and increase the dose slightly. All the information that we previously had about Sabril was that it was to be used short term because of the side effect of toxicity to the retina, causing peripheral vision loss. He indicated that those side effects were more to do with adult patients, not children. Further, it was beneficial to give it once a day, in the evening just before bed, rather than twice a day as we had been. Reasoning being that the drug would work its way through the bloodstream over the next several hours while it's dark and her eyes are closed, but it still acted as an anti-convulsant for up to 48 hours. If this change doesn't have any effect on the number of seizures over the next few weeks, his next suggestion is steroid treatment.
Dr. Dulac stressed that the most important thing is to get the seizures under control, because the next high risk period is 2-3 years of age, a time where there is such an incredible amount of cognitive development. Such frequent seizure activity is hindering Taylor's ability to develop, so seizure control has got to be the focus.
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