Saturday morning I got up before Andrew, who was sleeping in my bed. I assumed the worst of this virus was over. Then I heard a crash, and Andrew started crying. Afraid he had fallen out of bed, I raced upstairs. I found him half on the bed, half on my nightstand, with his body looking really straight and rigid. I picked him up and noticed he felt really cold and clammy. I carried him downstairs, where he immediately started dry-heaving. I ran him to the bathroom and set him on a stepstool next to the toilet, in case he threw up. The next thing I knew, Andrew's whole body had gone limp. He couldn't even hold up his head. I looked at him and said his name a few times, but he was completely unresponsive. He was staring strangely off to the side and didn't seem to have any control over his body.
I yelled for Adam (so thankful it was a Saturday and he as home!). Andrew started doing a weird shake with one of his arms, while still staring off at the wall. Adam took over holding Andrew in the bathroom, while I made the quick decision to take him to the ER. I raced around the house, throwing on shoes and grabbing my keys. I yelled to Ryan that he was in charge of his siblings, and quickly buckled Andrew in his carseat. Adam was close behind me in his car. All I could focus on was getting Andrew to the hospital as quickly as possible. I thought about calling an ambulance but didn't want to wait. Let's just say I drove very very quickly and took some liberties with the law. I kept turning around and talking to Andrew, but his eyes were now closed. I have no idea if he as unconscious or sleeping. I just kept praying out loud and saying the name of Jesus over him, all while making sure I could see his chest rising.
At the ER Andrew was still slumped over and not responding. They checked all his vitals and it wasn't until they drew an IV in his arm that he started crying. They ordered a CT scan of his head, a chest x-ray, full blood and urine workup, along with many other tests. Andrew was now awake but not talking. I think he was really frightened and confused.
The CT scan came back normal, so they were able to rule out a brain tumor (praise God!) The ER doctor told us that Andrew's neck felt stiff to her, and she was beginning to suspect he had meningitis. I argued that he had no other meningitis symptoms (such as fever and headache), and that he was probably holding his body strangely out of fear. She said she checked it when we first arrived, and he did not have the full range of motion in his neck of a typical 4-year old boy. She said a lumbar puncture would be necessary. It would require sedation, which could possibly affect Andrew's ability to breathe. Everything was happening SO fast and I was terrified of all possibilities. I just wanted to know what was wrong with Andrew, but Adam and I were really hesitant to go through with the lumbar puncture.
The doctor stepped out of the room to give us a minute to decide. A nurse slipped in, and in a low voice, asked us if we might possibly want a second opinion from a pediatrician. She kept glancing out the door, and I know she was trying not to let the doctor hear her. I felt like she was an angel sent straight from God. Yes please, we would love a second opinion! The on-call pediatrician came in 10 minutes later and I absolutely loved her. She sat and talked to Andrew, all while examining him. She said he definitely did NOT have meningitis. Instead, she suggested they keep him overnight for observation, run a few more non-invasive tests, and schedule an EEG for the following week to test his brain for seizure activity.
They moved us to a hospital room where an amazing nurse brought me coffee. (I now had a raging migraine from no caffeine or food all day) We got settled in for the night. Andrew was acting pretty normal by this point, and he really wanted to go home. He was hooked up to fluids, as well as a breathing monitor. His chest x-ray showed that he did have pretty bad croup, based on the narrowing of his airway on the x-ray picture. So I was keeping a pretty close eye on his oxygen stats.
To prepare for the EEG, we had to sleep deprive Andrew. Keep him up until midnight, and then wake him up at 4:30am. Poor guy was so grumpy, and his appointment wasn't until 1pm! Adam drove and I saw in the backseat, yelling at Andrew to keep him awake. During the EEG they stuck wires all over his head and then turned out the lights. They turned on bright flashing strobe lights and instructed him to close his eyes for 3 minutes. Well, my poor little guy promptly fell asleep! They let him sleep for about 40 minutes before we had to wake him up. He was then supposed to blow on a pinwheel for 3 straight minutes, in order to hyperventilate himself. He was NOT cooperating. The nurse came in and told us she had gotten enough data, and we could end the test.
We were told it could take a week to receive results, so when I got a call from neurology a few hours later, I knew that meant we had a diagnosis. They are very confident that Andrew had a Panayiotopoulos Seizure. This site gives a lot of information for anyone interested: Panayiotopoulos Syndrome | Epilepsy Foundation
This type of seizure only makes up 6% of all types of seizures, so while it isn't common, it also isn't extremely serious or dangerous. Our pediatric neurologist said that onset is usually between the ages of 3-6 years, and most kids outgrow these seizures within a few years. And during those years, many kids will only have a handful of seizures. This was all reassuring information, but I still hate the idea of my child having a seizure! And even worse, I keep replaying in my mind what happened. It was really frightening to see my baby unresponsive.
Going forward, we have to focus on making sure Andrew gets plenty of rest, as lack of sleep can lower his threshold for a seizure. Unfortunately. he is sick AGAIN right now (just 2 weeks later), so I've been watching him closely, worrying about another seizure. It's been an exhausting couple of weeks!
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