a little bit about: febrile seizures

I mentioned a few days ago that Evan had a seizure a couple of weeks ago and that he was admitted to the hospital because doctors thought what he had was not a typical febrile seizure. What I forgot to mention was that his pediatrician and the specialists we've seen now do believe that he did have a febrile seizure, with a little bit of atypical flair.

Before Evan's episode, I had never even heard of a febrile seizure, as I imagine most parents haven't either. What I know now is that it is normal and relatively common. WHAT?! I know. It's crazy, but from the ages of 6 months to 5 years, 1 in 25 children will have a febrile seizure. There is really nothing (except family history) that could tell you whether or not your child will have one.

So a febrile seizure is a seizure brought on by the up and down nature of a fever. Evan's fever had been up and down, but never very high for over a week. At the time he had the seizure, his temperature was slightly elevated (about 101), not to our knowledge at the time.

Now I am very level-headed about the whole thing, but to be honest, the seizure was the scariest thing that has ever happened to me and an image I will never forget. It's hard to explain if you have never seen someone having a seizure, but a few seconds seemed to last forever. Evan's initial seizure lasted anywhere from 2-4 minutes (not exactly sure since he was in the backseat of the car). I looked back and before I knew it, we were both out of the car, Eric was calling 911 and I just remember yelling "my baby! my baby!"

I sort of want to avoid talking about the scary details, but at the same time, I feel like by telling our story, it might help other people be even the slightest bit more prepared if it does happen to them. We had been in the car no longer than a few minutes and it was dark (probably around 7, honestly I don't remember) and I looked back, as I often do while we are in the car, and I saw Evan's head back a little bit, eyes crossed and rolled back and his arms up near his chest, tight to his body and he was just.. shaking.. not like a wiggle.. a shake throughout his entire body. My immediate instinct once I was back there with him (I have no idea how I got there) was to check his pulse and just to talk to him, tell him I was there. I could barely look at him, but I had to. He started to gurgle spit at the mouth and the tiniest amount of blood came out. We were parked in the middle of a street and Eric was calling 911. I remember him saying everything to the operator 3 times. "He's 3, he's 3, he's 3." Once the seizure started to die down, Evan's body went limp. His heart was beating and he was breathing fine, but he was not there. Eric came in to be with him and I instinctually went to get Mila out of the car, saying to Eric that I didn't want her to be scared. I never looked at her during the seizure. I have no idea how or if she was reacting. It felt like an eternity before the ambulance arrived. Eric called 911 again, probably prematurely, but we had to make sure help was on the way. Eric lifted him from the carseat and Evan clung to him immediately. He knew who we were, but he had no idea what was going on.

The firemen and EMTs that responded basically immediately told us that it was a febrile seizure, that it was normal. It was so hard to feel like anything that had happened was normal or okay. It was NOT okay! We made the decision that I would ride in the ambulance with Evan and Eric and Mila would drive behind. We got in the ambulance and it took a while to get going. They have to get monitors hooked up, paperwork started, etc. Honestly, it's a pain in the ass when you just want to GO and be somewhere that feels safe! I know that EMTs are qualified medical personnel, but I also know that in a hospital, there is more equipment available and more hands on deck. Once we got going, an IV had to be set. Evan was on my lap and just crying and whining and crying. It took four tries to get an IV in. It was difficult mostly because Evan was pulling away. Finally, the IV was placed and the EMT wrapped that bad boy up. The IV was necessary to dose medication in case another seizure started en route. The EMT informed me while he was having trouble that the medication could also be given rectally if necessary. I don't remember how long the ride was. I just remember trying to talk to Evan and show him all the lights and things we recognized on the ride. He just whined. At one point, he threw up a bit, mostly mucus.

When we got to the hospital, Eric and Mila turned the corner right as we were entering the ER. The EMTs told him that he might get kicked out. Ha! That was NOT going to happen. If you know Eric, you know that would not be an option. We were immediately in a room and we had to transfer Evan to his own bed. He was not happy. He was not with it, he didn't know where he was or who all the people were. He was not responding to what was happening at all. We were trying to juggle Mila and keeping a hand on him so that he had at least something he knew. The nurses were great and held her and had such a positive face on, even though I'm sure they could see the fear in our eyes. I don't really remember the sequence of events in the ER. They had to take his temperature, give him Tylenol rectally (he would not take it orally), hook him up to monitors, etc. All the "normal" protocol. I felt like I was being tugged a billion directions, having to sign consent forms for the ambulance, answer questions for the nurses and just wanting to be with my baby. I held Mila tight and Eric held Evan tight and we did all we could do. I went with him to get a chest x-ray, which went pretty quickly. Then, Eric went with him to get a CT scan. They took bloodwork and urine. Everything seemed to go so slow. It really felt like we were just sitting and waiting a lot. Too much. We started to Google. I saw meningitis as a possible cause for a seizure in a child. The x-ray and CT showed no abnormalities. His bloodwork showed elevated white blood cells and tests also showed that he had a pretty severe sinus infection. The doctor came in and Evan had been in and out of sleep, laying with Eric on the bed. He was sort of awake at the time, just crying and making a constant whining noise, just looking to his right up at Eric. The doctor tried to call Evan to look to the left at her and he wouldn't so she asked me to. He wouldn't. He COULDN'T. I remember Eric and I looking at each other, fear filling our eyes. Tears welling up. The doctor said that she thought he was still having convulsions and said she would give him another dose of the medicine that would make those stop. The doctor and main nurse told us that they were going to have to do a lumbar puncture. I'm so grateful Eric knew what they were talking about, because I didn't. Immediately, he started asking questions about whether or not the procedure was painful and why it had to be done. They told us that it was more uncomfortable than painful and since Evan was not really with it, that he would probably not feel it. Anyway, we had to leave and go to the waiting room while they did the spinal tap because it is a sterile procedure. We sat in the emergency room waiting room. Correction: I sat. Eric stood. And paced a bit. And stood at the window to the emergency room, looking at the feet on the floor in Evan's room. Waiting. I asked him to sit. He couldn't. I nursed Mila (again) and she finally fell asleep. It was late. After what felt like forever (again), we were let back in. Evan was fine. He had to lay flat on his back. We sat. We waited. We tried not to cry. We tried to stay strong. We tried to keep our minds away. We were told that the results showed that in the test tubes, the white blood cell counts were 10 and 11. Normal is 5. But for it to be meningitis, it would be in the thousands. Nevertheless, there was bacteria present, so he was admitted. We had already known that Mila and I would have to go home for the night so that she could sleep and that Eric would stay with Evan.

I went home. I drove. Into territory I felt like I had never seen before. A new place. Finally, a turn I recognized. Home. Mila asleep. I stayed awake for a bit, but laid in bed, just thinking. Eric kept me up to date. Told me the room #. Evan was asleep. He would sleep in his bed with him. At that point, Evan had been put on a medicine that would keep seizures away for 24 hours. Mila woke up. I nursed her, held her tight, we fell asleep. I don't know how. Exhaustion, I guess. Mila woke again. I couldn't fall back asleep. I couldn't put her back in her crib. I was so scared it would happen to her. I couldn't get the image of the seizure out of my head. I just stared at the ceiling, dozing in and out of sleep until morning. Finally got a few good hours come the wee hours. Immediately called Eric. He didn't answer. Freaked out, but kept it together for Mimi. Quickly prepared snacks and bags. Heard from Eric and took off for the hospital again.

Evan was awake. His IV had been re-wrapped. A big, blue, cast-like tape making it impossible for him to use his left hand normally. But he was happy to see me. He had no recollection of the previous night's events. He had already had a lot of clear liquids and used the bathroom. He hugged me. I cried. The pediatrician came to find out what happened and let us know how long Evan would stay- it was Sunday and he could leave Tuesday morning. He had to have pretty high-dose antibiotics to ward off any bacteria and the sinus infection.

Mila and I went home. Packed bags for the boys. I showered and cried some more. She napped. I went to the neighbor's house to let them know about what happened and make sure that their little girl was feeling alright since they had played together a few days prior. She was fine.

What was abnormal about Evan's seizure was the length, the additional convulsions and the elevated white blood cells (which actually were probably due to the seizure itself). The couple of days in the hospital were long. Mila and I went back and forth and Evan's energy returned full force the second day. The food was awful and someone should really do something about that. Hospitals and schools shouldn't be the places where the nastiest food is served so that someone can make a big profit. That's sickening. My poor boys barely had anything yummy to eat in 3 days, not to mention the fact that Evan had barely eaten for over a week due to him being sick in the first place.

Since he left the hospital, he has been a ball full of energy. We went to get an EEG, had a follow-up appointment with his pediatrician and went to see a pediatric neurologist in Charleston. Honestly, that kind of sucked. I am so grateful to have been able to see such great doctors, but not having a specialist within arm's reach in this town is kind of sucky. Oh well.

Evan's EEG came back normal and the neurologist told us that he believes it was a febrile seizure. It could happen again or it could be the only incident. Evan's seizure can't tell us whether or not Mila will have one. It cannot tell us much of anything. All it can do is make us more prepared, make us love him more, make us really realize the importance of life and every moment we share together. Just a little life reminder.

I hope that our story can help someone. Help anyone. Make someone feel less alone. Make someone love their kids a little more today. Everyday. Make us all feel more prepared for crisis. It isn't just about seizures. It's about dealing with what feels abnormal. It's about taking what comes and knowing that whatever it is, it's okay. It's not a tragedy, it's life. What is, is. I thought I would never get the image out of my head and while it creeps its ugly head in sometimes, I'm okay. I thought I'd never be able to sleep, but I can. Everything is good.

More information about febrile seizures here: http://www.ninds.nih.gov/disorders/febrile_seizures/detail_febrile_seizures.htm