Oct 28, 2021 Latest post:
Mar 20, 2023
Karlin had his first grand mal seizure when he was 12 years old and received a diagnosis of epilepsy shortly after. We realized then that he had been having seizures for years, only they were small enough that we didn’t recognize them as such. He began seeing a neurologist and started on anti-seizure medications. For a number of years his seizures remained small. Although he had side effects from meds, he did reasonably well. As he entered his twenties his seizures have become worse, increasing in severity and duration-often “clustering”, which means if he has one, he will likely have more throughout the day and night. He has been in the epilepsy unit several times, where they monitor him as he seizes. In the recent months, his seizures have become severe enough that he rarely feels well and he has been diagnosed with refractory epilepsy, which basically means drug resistant. We are exploring our options to see how he can be helped. He has an appointment with a neurosurgeon next month (Nov. 23, 2021) to discuss some surgery options. Due to one of his previous medications, he also has an acute kidney injury, (aki) which is a chronic condition that needs labs done regularly and requires close monitoring. Update- Since we started this Caring Bridge page, Karlin has had surgery and has had a VNS implanted. It is a device in his vagus nerve that is supposed to help regulate brain activity by pulses. He wears a magnet on his arm that can be pressed over the VNS while seizing to help lessen the severity or even stop the seizure. So far it seems to work in lessening them, but the amount of seizures he has now have greatly increased. Some days they are almost constant.