We really enjoyed a month without seizures, especially as it included Spring Break! We went to central Florida, where we enjoyed visiting Kennedy Space Center, St. Augustine, and Disney World. We also visited Crystal River, home to many wild manatees. At a refuge there we found the actual manatee that Rachel had adopted following her 8th birthday party. Rachel had asked for donations to Save the Manatees instead of presents, and one of the boys brought his piggy bank to the party to empty into Rachel’s donation jar!

The no-seizure month came to an end in mid-April. After two seizures within a week, we called her neurologist. She doubled the dosage, to one pill in the morning and one pill at night.

Unfortunately, this didn’t seem to help much, and Rachel continued to have seizures into May.

Dr. Cheyette referred us to Lucille Packard Children’s Hospital at Stanford. Specifically, to a neurosurgeon there, Dr. Cheshier, to discuss possible surgery.

It was a bit upsetting when he first came into the cramped appointment room with two baby docs in tow. Suddenly the room was very crowded, stuffy, and awkward.

However, Dr. Cheshier’s manner made up for it. He patiently answered all of our questions, showed us the lesion on the MRI images, and talked about what the surgery would be like. He said that although the hippocampus was fairly close to the lesion, he was confident he would be able to resect the lesion without damaging the hippocampus. He said that this surgery had a 70% no-seizures-ever-again success rate, with another 20% chance of greatly reduced need for medication.

He ordered a follow-up MRI in 3 months, to verify that it was not growing.

Along with the seizure diagnosis, Rachel was prescribed a new medication. She was started on one pill of Keppra a day.

Our reaction was “Oh great: a pill a day will keep the seizures away.”

Rachel’s reaction, however, was a bit different. “You mean I have to take this EVERY DAY?!? For the REST of my LIFE?!?”

It was a good reminder of the different perspectives we have toward medication at different ages. For many of us, how nice it would be to ONLY have one pill a day. For a tween girl, it was a small loss of freedom.

The only side effect we were warned about was a rare rash, so we dutifully watched for a rash, and none came. After starting the Keppra, the seizures came to a screeching halt. She did not have another seizure for about a month.

Rachel went in for an EEG at Good Sam Hospital. Another new experience for our little girl:

The result of the EEG was that Dr. Cheyette discovered that Rachel’s seizures were NOT Absence Seizures after all. The EEG showed that her seizures were starting in the right temporal lobe, and Absence Seizures generally start somewhere in the center of the brain. The new diagnosis was Complex Partial Seizures. “Complex” means that she loses consciousness, and “partial” means that she did not fall to the ground and lose all muscle control (grand mal).

The next step was an MRI to see if anything visible was causing the seizures.

Eventually we saw Rachel have seizures. Quite a lot of them, actually — she was having 1-2 a day by the time we took her to doctors. The typical seizure would last 30-60 seconds. She would generally keep doing whatever she was doing, but start making automatic motions such as lip-smacking or touching her thumbs to her fingertips. Her eyes would get red, like she was going to cry. She didn’t respond to anything we said to her. Afterwards she would be quite disoriented. Even after she would start responding to questions, she would later have no memory of the conversation. Sometimes she would get headaches.

Rachel presented her science project at the Santa Cruz County Science Fair. By this time we had gotten used to her seizures, which seemed to happen once or twice a day. We hoped that she would make it through the judging, but no such luck. After one judging session, the boy next to her asked “What happened to you?” He explained that she had stopped answering the judges’ questions, and eventually the judges gave up and left.

Apparently she still did well enough to win first place in her category, earning a trip to the State Science Fair in Los Angeles in late April. Go Rachel!

We finally started to realize what was happening after a voice lesson in early March. Her voice teacher came out to my car after the lesson, and told me with great concern that Rachel had become non-responsive during the lesson. I replied that we had heard about that happening at school, but that we didn’t know what to think. When we got home, we made an appointment for the doctor the next day.

Rachel’s pediatrician gave her an initial diagnosis of Absence Seizures. These are 15-20 second seizures that can often be mistaken for daydreaming. This diagnosis made a lot of sense to us, because the most common theme from all the years of parent-teacher conferences had been “Rachel needs to focus more.” The issue had never concerned us much, as Rachel is a very creative and imaginative girl. She had always been able to focus enough to do well at school and her activities. However, hearing that there might be a physical cause to her spacing out was somewhat comforting. Also comforting was reading that kids often outgrow Absence Seizures when they leave adolescence.

The pediatrician referred us to Dr. Cheyette, a neurologist in Redwood City. In the mean time, Rachel got ready for the County Science Fair.

The first seizure that we can identify with certainty was a pretty big one. Rachel’s class went on a mile run during PE, and just after they finished Rachel stopped responding to her friends. They had to escort her all the way back to the school, and after they got to the playground Rachel asked “How did we get here?”

When Rachel got home and told us about what happened, we had absolutely no idea what to think. Two words that never entered either of our minds: 1) seizure; 2) epilepsy. I’m a bit ashamed to admit it, but all we could come up with was “Oh, teenage girls are so weird.” Our brains did not go to any sort of health issue. Rachel has always been a very healthy, very fit girl.

Over the next two months, Rachel would occasionally tell us about another episode at school, but these reports only served to add to our puzzlement. Neither of us had any background that led us to imagine that she had started having seizures.