Yesterday morning, at 7:45 am Byron had a seizure. He was conscious but his eyes were locked to the left. He became jittery and had a severe headache. Over the past few months he had been complaining of headaches and had an episode of vomiting in the middle of the night.
Right after the seizure subsided I emailed his surgeon at Columbia, Dr. Feldstein. Within 10 minutes, just before 8 am, he emailed me back. Amazing guy. We were not able to see him as he had surgery all day so I reached out to Byron's epilepsy specialist, Dr. Akman. It turns out she has moved to the NYU Langone Epilepsy Center as the head of their epilepsy surgery center. After several attempts to reach her, by about noon, we heard back from her nurse. Off to the NYU Emergency Room! I was also able to speak directly with Dr. Akman who concurred that we should go the emergency room and the Bryon should be admitted to the hospital. We are very fortunate to have such great doctors on our team, and that these renowned epilepsy centers are within a two hour drive.
Bob took Byron to NYU and after a several hour wait in which Byron had over 9 recored seizures, he finally got a bed and hooked up to the EEG leads. We should get more information today.
Questions I have - What medications will they put him on to get some control of these new seizures? Where are the seizures coming from? If another surgery is the solution (there is still a lot of brain that could be seizing on that right side) is an anatomical hemispherectomy the answer? This is where they completely remove the brain on that side. The first surgery disconnected the right brain, the second removed the two lobes that had started seizing again in 2022. As a last resort they can remove the entire side. There are risks to this I think. Hydrocephelus does occur more frequently with this type of surgery. Would Byron even want to go through that again? As he is nearly an adult the decision would be his. More to come...
Byron in the ER with his Max Blanket
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