On Saturday, March 7, Jenelle had a really great morning. She did well in her Challenger baseball game, was alert and had great balance. Big brother JD had a basketball tournament locally that started around 1:00 p.m. - when we got home from Little League, the weather was heating up. I decided to skip JD's basketball game and stay home with Jenelle to keep her out of the heat, and out of the noisy basketball gym. As it turned out, it was a smart decision on my part.
After feeding Jenelle lunch, she was quiet and indicating signs of wanting a nap. I put her down to play in the living room with her toys while I relaxed with some music hoping to drift into a nap myself. I soon noticed that Jenelle was having one of her usual seizures with the funny eye brow movements. These usually stopped after 30 to 40 seconds. As I watched, and realized she hadn't stopped. One song ended, another started and still no end to the seizure. As we approached the end of the second song (so approximately 7-8 minutes) I ran to get her Diastat. As I sat next to her, she was still seizing, so I administered the Diastat. Being alone, and this being an unusual length for this type of seizure, I called 911. Unlike normal, the seizure did not stop after the Diastat. The operator was calm and sent paramedics. I ran to open and leave the front door open so the paramedics could walk in; and returned where Jenelle was still seizing.
Paramedics arrived very quickly - I'd say within 5 minutes or less. The walked in and called for us and soon were by Jenelle's side administering oxygen and taking vitals. Unlike our last encounter with the paramedics, they recognized her twitching eyes and acknowledged that she was still seizing. At this time we were close to 20 minutes. After a few minutes of taking vitals and getting her history, the paramedics decided to administer Versed. The last time she got this injection, she immediately snapped out of the seizure. This time, it took another 3-4 minutes before she finally came out of the seizure after the injection of Versed. I had quickly packed my purse with my phone charger and Kindle, and soon we were en route to Children's Hospital OC emergency department.
Jenelle remained groggy for quite a while at the ER, where we decided to get blood work to check for illness given she had diarrhea just a few days before. I explained how we were working with Dr. Tran to rule things out like insomnia, so they contacted Dr. Tran after obtaining normal blood results for her recommendation. Within an hour, we were being admitted. I would have been comfortable taking her home, but this guessing game needed to find a conclusion, so the admission was a great idea too.
Our first night, they ran a urine culture to rule out UTI and mostly left Jenelle alone as she was recovering from Diastat and Versed. It was a rough night and she woke a couple of times. The urine was normal. The next morning was not an easy wake given the new Daylight Saving time change. After breakfast, Jenelle was quickly put on a video EEG so we could hopefully capture the funny eye brow seizures. Dr. Tran believed they could be complex partial seizures. Of course, now that she was on the EEG monitor, and after the heavy medications the day before - no seizures. That evening I left to get a shower and spend time with JD. While I was out, the EEG Technician ran a test with the strobe light which caused Jenelle to have 3 seizures. Not the eye brow seizures, but seizures that typically occur from strobe lights. Upon my return, Jenelle had 3 more seizures. I didn't get a chance to see her face to confirm the eye brows twitch when it happened, but marked them regardless. She soon fell asleep and had a pretty restful evening only waking once around 4:00 AM when the nurse took her vitals.
Sunday morning, the neurology doctor informed me that the seizures we marked were atypical absence seizures. Neuro wanted to remove the EEG and add Depakote. When I told him we didn't get the eye brow seizures, they decided to keep the EEG hooked up until we got them. An hour later, I marked 10 eye brow seizures over the course of the next 2 hours. I was very confident that we captured what we needed, so the EEG electrodes were off by 1:00 PM. Jenelle was still having many "eye brow" seizures, which the doctor confirmed were absence seizures, and not complex partial like originally thought. Dr. Tran ordered a "loading dose" of Depakote via IV to quickly bring her to the therapeutic level to help stop the clusters. The IV took an hour to administer, and after Jenelle and I took an hour long nap! At dinner we started her new dose of Depakote, along with her other medications. She fell asleep early at 8:30 pm but woke a couple of time during the night. No one really sleeps well at the hospital.
Today, all we needed was a poop. Since her episode with diarrhea last week (6 poops in a day!) she hadn't pooped in 7 days. We finally decided an enema was in order, and a half an hour later we had poop! Jenelle has been having very short absence (eye brow) seizures today, a total of 10-15 in all. It's only been a day on Depakote, so we'll give it some more time to see how if it helps. We follow up with Dr. Tran next week.
Thank you all for your thoughts and prayers. In the rush of things, I didn't have a lap top, so I could only update on Facebook from my phone. Praying this new medication helps our girl, and thankful to know what we are dealing with!
That is all for now - I'll keep you posted!