Seth has gone through several changes this year. Unfortunately, one of the changes is that his seizures have returned with greater frequency. Seth had several seizures in October and November last year, but things were quiet over the holidays. The new year brought an uptick in seizures, a med change and a change in school placement.
After much careful consideration, Tony and I decided that the private school Seth had attended since Pre-K was no longer able to meet his educational needs. Seth is very bright and works extremely hard in school, but due to the effects of epilepsy, he requires accommodations to help in areas where he has deficits. Seth had a neuropsychological evaluation and multiple assessments at school in order to determine his eligibility for special education services. He now has an Individualized Education Plan which specifies the services he will receive. The transition to a new school mid-year presented some challenges, but Seth did well academically and made some new friends. Seth missed quite a bit of school because of the record breaking winter we had, increased seizures and medical appointments. And in the middle of it all, he developed appendicitis and had an emergency appendectomy. Despite the bumps, Seth continues to bounce back.
Seth has had more seizures already this year than in any previous year. The medication he started earlier this year has not been effective, and he has gained a considerable amount of weight since coming off his previous medication, which acted as an appetite suppressant. We are concerned about his sleep, as he has been napping daily, which is highly unusual for him. We have requested a sleep study and are just waiting for it to be scheduled. Seth had a neurology appointment last week and we agreed on another med change. He has failed so many meds that the likelihood of finding one to be effective is very unlikely, but we are still hopeful that his seizures can be controlled. We have also decided to schedule another video EEG long term monitoring, which has yet to be scheduled. This involves a 3-5 day inpatient stay with 24/7 monitoring via EEG and video in hopes of capturing seizure activity. We need to find out if his patterns have changed in order to plan next steps. Attempting surgery again could still be an option, although after going through it once already, not one that we look forward to. However, if we find that surgery is the best option moving forward, my feeling is that we would try again.
It is hard to be at this unknown point again. It feels like life is up in the air, yet the world keeps going on all around us. My challenge is to try my best to live in the moment and not get caught up in the what ifs and the unknowns. Please pray for wisdom as we continue on this journey.
