Note: all of this happened between July 31 and Aug 19th. Three weeks of hell...
B had his first seizure on July 31, 2013. He woke up seemingly fine, and asked for breakfast. While he was eating, my husband and I were in the "library" (fancy name for our room with bookcases), talking, and checking email. One minute I heard B talking to one our dogs, and the next I heard him making a gurgling sound. I assumed he was playing with this chocolate milk, and walked into the kitchen, expecting to find him with milk dripping down his face. Instead, I found him on the floor. Unresponsive.
At first I thought he was choking, and I picked him up to try and Heimlich him, but I realized even though he was gurgling, he was breathing. The fact that he wasn't responding to me, at all, made me realize something else was going on. I passed him off to my husband, and called 911. I told them I thought my son was having a seizure, and the ambulance was there in minutes (upside to living in a small town, where nothing happens, and the fire station is close by.)
By the time the paramedics got there, B was "conscious", but couldn't speak, and acted like he was incredibly drugged up. Long story short---one ER trip, a cat-scan, and four hours to recover later (B takes a VERY long time to fully recover), we left the hospital with a diagnosis of "seizure", a paper telling us to find a neurologist, and no idea what was happening with our child.
We got in with a neurologist a few days later, who told us hopefully this was a one time event, how not uncommon it is, and we left with an EEG order and our fingers crossed this was a one time deal.
Unfortunately, 8 days later seizure #2 (and we think #3...a shorter one on the ride to the ER) happened. The kids were getting in the car for camp, and B dropped to the ground and started to seize. K was the one with him (I was in the basement, following closely behind, but not yet at the car), and when she saw him fall, she ran to the deck and told my husband B was hurt (GO K!) I had my husband take K to camp (sitting in an ER was not going to work, and her camp is wonderful. I knew she'd be OK there), and I took Ben to the hospital. I am pretty sure he had another, smaller seizure on the way there, or maybe his first one hadn't really finished when we left, but another four hour ER visit (and a couple calls by the ER doc to our neurologist), and we were headed home again, with the promise of an EEG the following day.
Ben had his first sleep-deprived EEG Aug 9th, and after chasing down the results, we found it showed seizure activity all over his brain.
And this is when we switched neurologists, because we were told we couldn't be seen for 3-4 weeks for a follow up, and I was NOT OK with that. Thankfully, a friend got me in with her children's neurologist a few days later, and that's where we stayed.
The first medication B was on was Lamictal. Lamictal can have some super serious side effects, so the titration period is very long. We're talking 2-3 months. I wasn't happy with that, but our original doctor refused to discuss other options with us. Our new neuro thankfully listened to us, and changed B to Depakote. We could titrate up A LOT quicker, and we all felt more comfortable. Another sleep-deprived EEG was scheduled, since all doctors want their own data, and we were feeling a little more comfortable with the plan.
Then the bottom fell out. On the way to the 2nd EEG, B seized in the car. I pulled off at the nearest exit, and waited next to his car seat until he stopped (I didn't see the point in moving him.) After a call to the on-call neuro, we continued in, because they wanted to see him, and still wanted to do the EEG. B, exhausted from his seizure, fell asleep in no time, and the EEG went really well. Of course, right after the leads were removed, B seized again. Thankfully (I guess), the doctor was there to witness it this time. Because he had 2 seizures in a row (B's seizures are always tonic/clonic, better known as grand mal seizures), they decided to keep him overnight, and give him IV Depakote to boost the level in his system.
While we waited for a room, my husband drove to the hospital to stay with B so I could go home and grab some stuff. I got a text when I was halfway home that B seized again on the way up to his room. That 2 hour round trip from the hospital and back took what felt like years.
Long story (kinda sorta) short, again, they decided to do a sedated MRI that night, bc he kept seizing, and started him on the meds. Thankfully, thankfully, his MRI was clear, although we were left with no real explanation for the seizures. B was diagnosed with Generalized Epilepsy, because he has seizure activity throughout his whole brain, and not at one focal point. The doctors have no clue what causes them, and we pretty much just have to hope the meds keep them under control. He has to go 2 years with no seizure activity before trying to come off the medication (and let me tell you, seizure medication is no joke.)
There is a lot of unknown when it comes to Epilepsy, and the more I Google...well, let's just say B will continue to sleep with us until my husband springs for the $600 seizure monitor for B's own bed.
I'll say this...B's seizures looked nothing like those you see on TV, where someone flops like a fish out of water. That's why I didn't realize his first seizure was a seizure. He definitely convulses (sometimes pretty violently), but they're rhythmic convulsions, and his body gets stiff, eyes are open to nowhere, and he always foams or drools to the point you think he is vomiting. You just can't mimic the body movements of a real seizure on television...
For more information:
Epilepsy Foundation
Danny Did Foundation
Talk About It
