Back from the edge, a new perspective - one year after diagnosis. Time moves differently now, our routine is focused on Connor’s medicine being consistent and sleep has moved to the top of the importance pyramid. It helps having an Alexa Echo in our kitchen because we have set reminders to help Connor take his medicine, not only does it help us to remember to give the medicine but it makes an announcement so everyone knows, including Connor. I feel like he became less resistant after adding this device and that’s really been helpful.

The seizure activity over the last twelve months has been lopsided, with the majority of observed seizures occurring more recently. In fact, he only suffered two seizures in the first six months after our stay at the Children’s Hospital. They both happened on April 23rd and they were both in the morning time, 8:30A and 10:00A. We thought, at the time, these seizures could have been triggered by a lack of sleep - which is definitely possible but we are not certain. Connor does experience nocturnal seizures, these can look like a simple arousal from sleep, at times confused as a nightmare. We have learned that these can cause abnormal sleep behavior and he may not get quality rest during these episodes.

Since May, he has suffered many more seizures unfortunately. Twenty one, to be exact. We count the seizures that we have observed or his teacher /school nurse observes. In his seizure journal, we also track the postictal behaviors to see what we can do to help Connor recover afterwards. Rest, comes in again as the most important thing. He may experience disorienting symptoms such as confusion and drowsiness, this lasts typically around 45 minutes. 

In September, school started and there was definitely an increase in his seizure activity. In October, we saw some unexpected seizure clusters and we have been in constant contact with his neurologist team to find new ways to respond. You see, most seizures are stereotypical and you can expect the same symptoms but these clusters are not like the other seizures we have observed. They have continued and they are not what we are used to - I believe, the medicine has allowed an evolution to happen where the seizures are more frequent but hopefully less intense/impactful - less harmful to our Connor. 

We have made extra trips to visit with the local clinic and discussed enhanced classroom experiences, which is a special education plan. Speaking with our primary care doctor, local pharmacists, and a group of educators has provided additional medications and classroom interventions. Through these efforts, we have learned a lot and are looking forward to powering the experience by reflecting with our blog and continuing to share the journey we are on with Connor’s health.