Seizures, ER Visits and Parental Post-Traumatic Stress

So we had our scariest parental experience thus far on March 14th. I haven't written about it yet because it took me a little while to even be able to talk about it without wanting to cry (or actually doing so). Dane starting running a low-grade fever on Saturday night of that weekend, and we treated it with Tylenol. By the next afternoon (Sunday) it was creeping higher and higher even with meds dosed at the recommended intervals. I decided to switch to Motrin since it lasts longer. But even still it got up to 103.7 around 5 p.m. Don and I had a David Gray concert to go to that night...it was one of my Christmas presents to Don since he sings "our" song that we danced to at our wedding. But we decided we would both be too stressed to go with Dane having his highest fever ever, and we didn't want to put my dad and brother (who were supposed to watch him) through that. Well thank goodness we made that call! Or my poor dad would have had to deal with this trauma.

We called our pediatrician's after hours line that afternoon when the fever hit 103.7. That call goes to the Seton nurse line. Now keep in mind, this boy has really never been sick. He's had a few looowww fevers and a runny nose or two but that's it. So this high fever was freaking us out. But the nurse we spoke with said it isn't actually even considered "high" until it's at 104. She said if it gets to 105, we need to take him into the ER. But here is where the problem came up...she told me that I should NOT be switching between Tylenol and Motrin as I had been doing. That I needed to pick one and stick with it. Since the last dosage had been Tylenol, she said to stay with that. She asked how much I had given him and when I said 2 full droppers, she said that was too much and that I should only have given him 1.5 droppers. Now Dane weighs about 24.5 which is exactly the borderline between doses, but he's only a year and a half...it goes up to 2 full droppers at 2 years and his weight. So I thought based on weight he should get 2. She said no, only 1.5. So at 9:00 p.m. I gave him 1.5 droppers of Tylenol as directed.

Dane was asleep with Don when woke around 11:00 crying and he just felt soooo hot. I took him out on the couch with me and gave him juice and he fell back asleep in my arms. I was planning on just staying awake to give him his 1:00 a.m. Tylenol but I took his temp again at 12:00 and it was going up so fast that the thermometer wouldn't even beep. I'll never forget that feeling of dread as it crept up point by point as I watched...this was under his arm (ancillary temp) so you're supposed to add 1 point to that. By the time it got to 104.2 (which is 105.2) I jumped up and woke up Don and said we need to take him to the ER and that I was going to go ahead and give him more Tylenol even though it wasn't time. But we didn't want to overdose him so we called the nurse line again as we were trying to get ready to take him in, and she said before going in to get in a tub of lukewarm water to try and bring it down some, then take him in. So as I'm on the phone with the nurse, Don and Dane strip down and start to get in the tub...but literally as soon as he did, Don jumped right back out and yelled from the bathroom that he was having a seizure. Now the first thing the night nurse asked when I said he was at 105 was, "Is he seizing?" so in the back of my head I guess I was halfway expecting it, or somehow when Don said he was seizing it was like I knew it was going to happen. But she hadn't said anymore than that on the subject, and I had not ever read up on febrile seizures (which are caused by the temp either raising or lowering too fast) so neither of us were prepared for this.

I'll never forget their faces, both Don's and Dane's, as he came around the corner holding my baby, both of them naked, Dane's head back, arms shaking, eyes rolled back. Obviously everything gets blurry there, I know Don was yelling at me asking what to do, and I was yelling at the nurse that he was having a seizure and what do we do? and then Don handed my shaking baby to me and grabbed the phone...both of us grasping onto what we felt we could do best...me, comforting Dane and Don, getting and giving directions. Dane's lips were turning blue and he was making this horrible noise (which they said was him breathing but it sounded like he was choking). I kept yelling at Don to hang up and call 911 and get an ambulance here, but didn't know that the nurse had already transferred him to 911 and Don was talking to the dispatcher. Don kept telling me just to keep him safe, not to let him hurt himself. In the back of my head this whole time, I thought that when the seizure stopped, he wouldn't be breathing and that I was going to have to do CPR. I knew I had all those instructional papers in the draw in the kitchen and I was just hoping I could remember how to do it. I kept thinking, "My God - what is happening? This is just a fever...he can't die from this, can he? It's just a fever..." But I didn't know, all I knew was he looked like he wasn't breathing and I was in a state of complete and utter panic.

The seizure finally stopped (it probably lasted under 2 minutes) and his color came back. I remember Don counting his breaths to the 911 operator to determine if he was breathing well. But he was still so limp in my arms...limp in a way that isn't like a sleeping baby, and his breathing was raspy and weird-sounding, and his eyes were still rolled back. It seemed like forever before the ambulance came, and this whole time I was holding Dane trying to talk to him and keep him calm even though I wasn't sure he could hear me, and Don was running around trying to get clothes on while talking to the 911 operator. I remember I was rocking him and praying for him to be okay and asking Mo, my grandma, to be there and surround him and comfort him and be with him. So funny the things you think at times like those. But I am sure she was there.

I was so relieved to see the paramedics arrive, and they were wonderfully soothing. They laid my naked little unconscious baby on the bed and gave him oxygen which started to bring him back around. The paramedic said they can be out of it for as long as 20 minutes after a febrile seizure. Then she asked about his last dosages and went ahead and gave him more Tylenol. But the first thing she said about me only using Tylenol was that I should switch back and forth between Tylenol and Motrin! And she couldn't believe the nurse had told me not to do that. She was also a mother and knew just what to say to me...she was very reassuring that febrile seizures are common and - as scary as they are - not that big of a deal as long as they child doesn't injure him/herself while seizing. That immediately calmed me a great deal, because I didn't know - the whole time I waited for the ambulance to arrive, I worried that my little boy was going to be permaneantly damaged by this seizure. They said they did want to go ahead and take him into the ER to make sure that's what it was (a fever-induced seizure) and try to figure out what was causing the fever. So I rode in the ambulance with Dane to Children's while Don followed in the car. It was around 1:30 in the morning when we got there, and Dane's temp was still almost 104. So the hospital gave him another dose (of Motrin) only 45 minutes after the Tylenol. Now, I never would have thought that was okay to do, but it finally brought the fever down and after all the tests and needles and catheters, Dane feel asleep in my arms in the hospital bed and sweat and sweat and sweat (which we hoped was the fever breaking, but no...it came back again and again).

All the tests for infections and flu came back negative, and the ER doc said it was just some sort of non-specific virus and that she'd been seeing a lot of high fevers. As high as it sounds, fevers aren't even really damaging to children until they get to the 108 level (can you believe they can go that high?). They gave us instruction to alternate Tylenol and Motrin every 3 hours and to give 2 full dosages of Tylenol (ARGHHH!!!) until the fever started to let up. We finally got home I think around 6:30 in the morning and all slept.

The next 4 days were just a blur of us constantly taking Dane's temperature, giving medicine, trying to get him to rest and waiting for it to finally go away. Don and I were both having a hard time getting that mental image of Dane seizing out of our heads. In fact, the next day I fell asleep with Dane beside me and immediately had a nightmare he was seizing again, sat up and yelled only to find him sleeping soundly. Thursday was his first fever-free morning. I couldn't believe how long it lasted. We followed up with our pediatrician that Tuesday and she confirmed what the ER had said - just a flu-like (but not the flu) virus. He never got any other symptoms - not even a runny nose...just the fever.

So all is well now and we all got through it, but I can't stop feeling so angry at the bad advice I got from the Seton nurse line. I told my pediatrician about it, and she said she would speak with them and that they say that just to cover their butts because people can easily mess up the dosing if they switch back and forth, but I said that is crap for them to say one thing when everyone else (my pediatrician, the ambulance tech, and the ER doc) all said afterward that I should be switching. It's very frustrating...as is the $2,600 bill we just got from Seton (which is after insurance and doesn't even include the ambulance). But the MOST important thing is Dane is healthy and will not have any negative long-term effects and Don and I sure as heck learned a BIG parenting lesson about Tylenol, Motrin and fevers. So next time, we'll know just what to do.

As a post-note, I recently learned that I had a couple 105+ fevers as a baby and was dunked in ice water to bring them down. Another thing they say now NOT to do. But I turned out fine, didn't I. I mean, I did, right?