April 15, 2022 "2 seizures and an EEG"

 April 6, 2022

Rayden had been fighting allergy symptoms for about two weeks. He was taking Zyrtec at night before bed for the past couple of days. Around 6:30am I was in the kitchen getting ready for work. Rayden began moaning. When I entered his room I noticed he had labored breathing and shivering all over. He didn't reply to my questions. He began gagging and had the strangest breathing pattern like gasping for air. I gave him a sip of water and he threw it up, still shaking/shivering and not responding. He was limp and couldn't hold himself up in the bed to throw up so I had to help him. He wasn't talking and his response to our questions were mumbled. He kept looking toward the wall (left). When I did get a look into his eyes it was like he wasn't in there. He reached to hold my hand. At 6:50 I told Alex to call 911, as I called Paige Dunn (family friend and Paramedic). Thank God she was working and not on another call. Michael went to get Rayden's rescue medication from the kitchen counter but we did not use it because the ambulance had arrived (7:00). I was so relieved to see Paige. She has no idea how much her presence just set me at ease. They did an EKG, blood pressure, sugar, and pulse ox. During all of that, his shaking/shivering slowed down and his eyes started to look around the room at everyone. He finally replied to their questions with only one word and was able to hold himself up in bed for a second without falling down. They said they could transport him to our local hospital but it looked like the seizure had subsided. We decided to stay home and allow him to sleep it off. Alex crawled in the bed beside him while he slept. When he woke up at 11am he didn't remember a single thing. I contacted his neurologist, Carolyn Zook Lewis, at UNC. She recommended increasing his daily seizure medicine (Oxcarbazepine) from 3.8ml to 5.0ml twice a day. 

April 12, 2022

Rayden went to bed around 9:00pm. I normally lay down with him until he falls asleep and then go to my bed. I truly believe God allowed me to fall asleep WITH him so I could be there when he had another seizure. Around 9:35pm, I was awakened by Rayden violently shaking. I called his name with no response. I touched him, only to find that his entire body was stiff and shaking. I yelled for Michael and Alex who were still watching TV in the living room. When they turned on the light I was able to see Rayden's eyes, the scariest sight! They were wide open, looking straight ahead without blinking. They were fixed and fully dilated. I could tell Rayden was not in there! His left arm was bent and going back and forth almost hitting himself in the face. I tried to stop him, but his limbs were so stiff I couldn't move them. Michael ran to get his rescue medicine and Alex called 911. After 3 minutes I administered the diazepam but it didn't stop it right away like we thought it would. He continued seizing so I just laid my body across him and started praying. Michael grabbed my phone and called Paige. She wasn't working so she and her mom came right over, beating the ambulance by about 5 minutes. Rayden's seizure subsided about 2 minutes after I gave him the diazepam, just before Paige and Dawn arrived. As soon as I saw them I began to cry. Even though Paige did not have one thing that could help Rayden, just seeing her seemed to relieve my fears. Dawn took me into the other room, prayed with me, and restored my confidence while Paige and Alex sat and talked with Rayden. The Paramedics arrived and checked Rayden out. Even though he looked alright, we were encouraged to take him to UNC Emergency Room for observation. Alex kept Rayden awake and talking the entire drive. We were just all afraid for him to fall asleep. 

The ER physicians monitored him for about two hours and decided to discharge him. They recommended increasing his Oxcarbazepine from 5.0ml to 6.0ml twice a day. They also ordered an EEG for next week. Since Zyrtec is the only thing new we could think of, we asked if it could be the cause of the new seizures. They really didn't think so but recommended we stop and discuss it further with his neurologist next week. We got home about 4:00am. I went straight to the kitchen and threw the Zyrtec in the garbage. Of course, we all stayed home that day and tried to get some sleep. We were too scared to let Rayden sleep in his bedroom alone, so we put him in our bed just in case. 

April 15, 2022

Rayden had an EEG around 10:30 this morning. He was surprisingly calm and brave. He talked to the technician the entire time she was attaching the 21 electrodes to his scalp. He kept asking her if she was "putting on 5,000" and she would jokingly reply "no, only 2,000." During the exam she asked him a few questions, of which he struggled to think of the answers. She also attached a flashing light to see if it would trigger a seizure. Ultimately, she wanted him to fall asleep, even asking me to lay down beside him. He may have felt drowsy but he never went to sleep. 

The EEG revealed activity in the right frontal leads had increased beta and sharp theta activity. The flashing lights stimulated a driving response at multiple flash frequencies but no epileptic activity was identified. The clinical interpretation stated the increased faster frequencies in the right frontal region is likely a breach rhythm indicating an underlying skull defect. It also showed generalized slowing reflecting a diffuse non-specific cortical dysfunction on the basis of a toxic-metabolic systemic or primary neuronal etiology. 

I know that all sounds foreign. We meet with the neurologist to discuss the results next week.