I really hoped I wouldn't have to do another post like this, but here it is. Last weekend at 4 am I heard Penelope moving around in bed and then start throwing up. I ran to her room and she was having a seizure. It wasn't violent, but scary to see...lots of twitching of her arms and legs, vomiting and staring off into space. We immediately went to the hospital. It was very much like the experience in January, except she came out of the daze a lot faster. She demanded to know why I would bring her to the doctor without shoes. By the end of the day we were at the park playing basketball.
Since 40% of kids never have a second seizure, the doctors don't do any testing after the first one. Now that she had a second seizure, they needed to see if there was a cause. Thank goodness that I have a friend who is a neurologist. On Monday night she talked me through all of what they'd be looking for and what would require more testing. We had the EEG on Tuesday. The EEG required that Penny only get 5 hours of sleep and be very tired by our noon appointment. oh my goodness that was rough. We kept her up until midnight and then the alarm went off at 4:45. I took her to the indoor playground in the morning. She was falling asleep in the 10 minute drive to the doctor's office. She did great with the EEG. They had her awake for 20 mins asking her questions and putting a strobe light in her eyes. Then the tech let her take a nap for 20 mins. (chris and I also fell asleep in the chairs).
At our appointment with the pediatric neurologist, we learned that all of her blood work was fine, but she had a lot of epileptic activity happening on the EEG. Without medication she has a good chance of a seizure happening again. Also, they saw a lot of activity happening in one area of her brain while she was napping. Due to this he wanted to do an MRI to rule out any adhesions, tumors, scarring. Since she had no other symptoms, (developmental delays, problem with balance, sight, concentration, etc) he doubted we would find anything, but needed to make sure. We were able to get an MRI appointment for the next morning...that was the longest 15 hours to wait!
The MRI is a 45 minute test where the patient has to be absolutely still so understandably kids are sedated for it. That was so tough. The anesthesiologist was amazing. Think Patch Adams but no clown suit. Penny loved him. I went to the back with her and she sat on my lap while they gave her the anesthetic. Any surprise that I cried? Then we had to wait for an hour. She woke up in no time, had an ice pop and wanted to get real food right away.
The best news was that the MRI was completely normal so she was given a diagnosis of epilepsy. That sounds very scary, but the definition of epilepsy is 2 or more unexplained seizures. That's the only diagnostic criteria. 1% of all children have epilepsy and the majority grow out of them. The doctor is confident that Penny will most likely grow out of it. He put her on a very low dose of medicine that she takes twice a day. If she has another seizure they will increase the dose. The goal is for her to be seizure-free for 2 years and then do another EEG.
So that was our week...it's weird to say that we are relieved by an epilepsy diagnosis but after everything we learned, this was the best answer we could get. I know it can be a life changing disorder for some kids, but so far with Penny we think it will be very manageable and not long-term.
