It seems like so much is happening lately its hard to remember where I left off on the last update. Jenelle is fine today, and we are anxiously waiting for our next appointment at UCLA. However, the last two weeks have not been easy for our girl. If you recall, Jenelle and her brother had a bit of the stomach flu on January 4. This episode has really taken a toll on Jenelle and her seizures have increased. On January 10, almost a week after the vomiting incident I noticed that Jenelle was abnormally sleepy on the way to school. That afternoon, Grandma had transported her from school to daycare and called to tell me she was seizing the whole ride. Also, school said she was barely eating and I knew she was doing the same thing that morning, so I called her doctor and asked to bring her in. I thought we should check for ear infection or other problem since Jenelle cannot always tell us what is wrong.
We saw the doctor and he examined her to find her ears were clear, but throat had a "raging infection." We both agreed this was in relation to her stomach bug the week before. As he was about to give me a prescription for an antibiotic, Jenelle had another lengthy seizure in front of him. Dr. Patel decided this was not normal for Jenelle and instructed me to take her to the ER instead for lab work and possible IV fluids. He just wanted to be cautious. We had tried so hard to keep her from the ER the week before, but I agreed it was the best thing to do. Also, we were not going because her seizures were out of control, but rather that they were indicating she just wasn't well. It was raining and almost 5 p.m.. but to our surprise, the ER was empty!
We were seen by a resident who took down Jenelle's extensive history, and of course was unfamiliar with her type of Epilepsy. He examined her throat and said it was fine. This should have been our first clue to run. The resident then left to return a half an hour later informing us that he spoke to the on call neurologist, and he wanted to add a drug called Keppra to the drugs Jenelle was already taking "since it was obvious her current medications were not working." Almost in unison Brett and I replied, "No" and "Did you call UCLA?" to which the resident was most surprised! I don't think he ever had a parent decline his instructions, let alone question his advice. Again, we were not there for her seizures, but rather to make sure she was well. They ran some lab work and long story short the results were normal, but did show that she was either getting over a virus, or just starting one. We left with a prescription we did not intend to fill for Keppra. I spoke to UCLA the following day, and they told us Keppra was not a good drug for her seizure type and to disregard the prescription. I sure am glad we knew what we were doing!
Jenelle continued that week to have more seizures, but started to be more like herself towards the end of the week. Unfortunately, on Friday the 14th, Jenelle had a grand mal in the car on the way to daycare. I was able to pull over to assist her as it didn't look like she was breathing. She was fine and it only lasted a little more than 2 minutes. It was a bummer though because I don't think we've seen a grand mal since early November? Seizures always keep us on our toes - just when you think they are gone! The day after her grand mal, Jenelle has a slight fever of 100.8, so I assume she was still not 100%, which of course is the reason for the recent grand mal.
Like I said at the beginning of this update, Jenelle is doing well now, and we've seen a decrease of seizures these last two days. Attached is a recent photo of the kids at bedtime, ironically the night before Jenelle's grand mal last Friday. It is a rare one in that Jenelle is not sucking her thumb, and you can see her pretty face! This is now my favorite photo - enjoy!
Jenelle and Big Brother Jack!
As always, thank you for the continued prayers. I'll keep you posted!