Ezra

Well, we finally have a name for Ezra's episodes: Complex Partial Seizure Disorder (aka Epilepsy)

Here is how we found out:

A month ago, when Ezra had one of his "fainting days" it did not last the normal 1 day. He "fainted" for 2 1/2 days. This made me nervous, so I called the doctor and took him in for an EKG. The results we inconclusive, so we decided to put him on a holter monitor so we could monitor his heart for 30 days can catch an episode on the monitor. We also saw a neurologist the same day who told me that it could be seizure, or his heart, or pediatric migraines. The neurologist wanted us to come in for a 5 day EEG in the hope of catching an episode. I could think of nothing more miserable than attaching electrodes to an otherwise healthy, active 2-yr-old and telling him to stay in a hospital room for 5 days with wires on his head.

We were nearing the end of the 30-day holter monitor and Ezra had not had an episode. I was thinking "Murphy was spot on with his law" as Ezra had never gone more that 28 days between episodes. Well, Thursday morning he woke up late and did not eat breakfast-- his usual m.o. I was grateful. We took a recording and called it in and told them that he stopped breathing and lost consciousness (as usual). They told me to go immediately to the ER.

We went up to OHSU.

Ezra was also feeling warm Thursday morning, and by the time I got him in the car to go to the hospital I could tell he had a fever, but I did not stop to take his temperature. I figured I was headed to the hospital, they would take his temperature.

We got to the hospital around 12:30. He was taken immediately to an exam room. They asked what he was coming in for and he started an episode right then. I said, "He is doing it right now." He was swallowing weird, face went pale, he stopped breathing. They started bagging him with oxygen and getting him hooked up to monitors, IV started, blood drawn. . . He started breathing after about 20 seconds and was asleep for a while afterwards-- until they put in a catheter for a urine sample. That woke him right up. He had a temperature of 101.2 when he came in. I asked them to test for influenza, H1N1, and strep, since he had been exposed to everything in the last few weeks.

The attendants in the ER noticed that his eyes went up and to the right-- a classic sign of seizure. His heart did beat really fast during the episode, but that is a good thing as he compensated for what his brain was not doing. He has no arrhythmia's or murmurs-- a good, strong heart. Around 2:00 they decided to start him on a loading dose of anti-seizure medicine. He had one more episode in the ER, but did not stop breathing or go unconscious.

We were taken to Dohernbecker Children's Hospital for our long-term stay. Ezra had a bad reaction to the anti-seizure medicine and was agitated , could not keep his body still, his arms picked and scratched at everything, body jerked, head looked around all over, his tongue kept flicking in and out of his mouth like a lizard-- 100 times per minute-- FOR 20 HOURS. They wanted to start a video EEG, but was so agitated that we decided to wait until the next day and do a sedated EEG. We were up all night-- even after 2 doses of tranquilizing medicine. I finally put some toys in his bed at 6:00 in the morning and let him play while I closed my eyes for a little while. He pulled off all his leads and I woke up about 8:00 to him holding on to the top of his crib saying "Hold on tight!!" and trying to climb out (it was very tall). He was very unsteady on his feet and he fell over which pulled out his IV. There was blood all over. They decided not to restart the IV.

Because they needed to to the EEG sedated, the did not allow Ezra to eat or drink after midnight. Imagine an agitated 2-yr old, fixated on his cars cup, and wondering why his mommy couldn't fill it up in the sink that he could see from his crib.

At 8:00 they told me he could have clear liquids until 11:30, and that his sedation EEG was scheduled for 1:30. I fed him some jello and juice and he FINALLY fell asleep at 9:00. He slept until 1:15 when he woke up with a fever. Poor thing. They gave him some Motrin and we decided to try him on versaid instead of full sedation for the EEG. I held him down for the first few electrodes. He really wanted marshmallows to eat. They used an air gun to dry the glued gauze over the electrodes. It was loud and Ezra did not like that at all. I thought maybe he would do better with ear plugs. He took them right out and popped them in his mouth-- wondering why we were putting marshmallows in his ears. So sad. He was pretty upset, but rather than go to full sedation, we mummy wrapped him. I held his body while a nurse held his head.

He slept afterwards until about 7:00 when I woke him up to drink something.

Meanwhile, back at home, Lance had to travel to Spokane for work. He left at 5:00 Friday morning and was planning on being home around midnight. I, having not planned on spending a few days at the hospital, was in desperate need for a shower and change of clothes. Tracy came up to stay with Ezra while I went home for a little while. She got to the hospital around 9:00. I told her to bring some marshmallows. Ezra was so happy.

Tracy called me while I was on the way home and told me the nurse came in and confirmed that Ezra has H1N1. Poor baby.

We slept much better Friday night. Ezra woke up with a fever at 5:00 and was up for an hour, then slept until about 8:45. The neurologist came in and talked with me for a while and we talked about calling these episodes "complex partial seizures" and to start him on a treatment plan. There is still a possibility that these are pediatric migraines, but evidence and history lean towards seizure. The anti-seizure medicine they are giving him have very low side effects and do not require titration (so no blood work). If it works, then we will keep him on the medicine for the next 2 years, then slowly take him off the medicine and see if the seizures return. If they do not, we will assume he has out grown them. If not, he will go back on the medicine. He is not at a huge risk for grand-mal seizures because of his history and the amount of seizures he has had over the past 8 months. Always a possibility, but not probable.

We were very glad to come home around 3:00 yesterday afternoon.

Poor Lance spent last night hovering over the toilet.

When it rains it pours.

I am very grateful to finally have a name to put with Ezra's episodes and a treatment plan to go with it. I am so glad that he had an episode in the ER where doctors could finally see what I have been trying to describe for months. I am grateful for medicine that will hopefully prevent him from having any more of these episodes. I am grateful for wonderful friends who helped with Jarom while Lance and I were gone. I am grateful for answers to prayers to find out what is wrong with Ezra.

I think hospital food is gross and wonder why they only play the same 2 movies over and over and over and over and over-- seems like they could mix things up a bit.