As Rachel started 8th grade, we felt a lot of support from her school. They met with us to discuss how to best help our family through the difficult year ahead. Her teachers were very compassionate, and ready to accommodate her upcoming absences as best they could. Rachel’s favorite part: no penalties for late homework!

There were certainly a lot of absences. Her new medication, Trileptal, did not seem to control the seizures at first. When Dr. Porter upped the dosage to a high level, Rachel immediately got so sick that she missed many days of school, on separate occasions. She then backed off the dosage to a place where Rachel didn’t get sick, although she continued to have about a seizure a day.

Rachel, for her part, has worked very hard to make up for the many missed days of school. Many times her teachers have been very surprised when she turned her work in much earlier than expected. We are very grateful that school is not adding stress to our lives.

OK, I admit it. Nothing really happened on our cruise to Alaska that has to do with Rachel’s epilepsy. Yes, she had one seizure on the cruise ship, so that can go on the list along with Hollywood Boulevard.

But we had so much fun in Alaska, and it was sooo nice to not think about seizures for a week. How can I NOT add this one teensy post, and squeeze this one cute picture in?

The week after Sound of Music ended, Rachel had another EEG, and the next day she met her new neurologist, Dr. Brenda Porter. The meeting with Dr. Porter was very eye-opening. She asked if Rachel had been having any side effects from the now-very-high dose of Keppra. When we replied no, she said “Really, not even the Keppra Nasties?” Our jaws dropped. You mean that all that eye-rolling, back-talking, and general negative outlook on life was NOT teenage hormones gone wild?! It was the medication?! Yay! Our sweet daughter is still in there!

Since the Keppra was not even stopping the seizures any more, we soon started weaning her off of it. The effect was amazing. All the goofy characters, with all the goofy voices, came back. The laughter came back. For Rachel, this medicine was waaay worse than the disease.

Rachel celebrated the end of 7th grade with another MRI, and another visit with her neurosurgeon Dr. Cheshier. This time he didn’t bring his baby docs, and it was a very calm visit.

As expected, the displosion had NOT grown since last March. He talked to us more about the surgery, and we had some questions ready for him.

He also referred us to his colleague Dr. Porter, a neurologist at Packard. He explained that it was no slight at all to Dr. Cheyette, whom we had been working with during the year, but just that since they worked together at Packard they would be able to coordinate her treatment much better. We set up an appointment with her for July.

Rachel became a teenager at the end of 7th grade. For her party we wanted to give a huge thank-you to the “Seizure Posse”: a group of friends who helped her through a very difficult year. These wonderful boys and girls learned to recognize her seizures immediately, would keep her safe while she was having them, and comfort her as she returned to consciousness. Is there a greater gift a child could give a friend’s parents?

We rented two poolside rooms in the Dream Inn. The kids started the day going on rides at the Boardwalk. Then it was fun and games in the pool, followed by presents (and silly string) in the rooms.

Through the Spring, Rachel kept having seizures, and her neurologist kept increasing the dosage. In late April she went to 2 pills / day. The first week of May it was up to 3. Even at that dosage, she had a few seizures during her class trip to Catalina Island.

The day after returning from Catalina, she went to 4 pills / day. She’d come a long way in a short time, from when she balked at taking one a day. But at this dosage, she finally got some relief.

It didn’t always feel like relief, however, Rachel’s mood was noticeably changed. She has always been a bright, happy girl with the sunniest of dispositions. She has filled our lives with laughter and joy. But by the end of 7th grade her outlook was decidedly negative. It wasn’t always easy to be around, but of course we understood that she had plenty of reasons to be down.

(Hint: that last paragraph was the type of fore-shadowing you can only do when you’re writing fiction or retro-blogging. Spoiler: it turns out Rachel really is bright and sunny!)

Rachel was a bit nervous going to the State Science Fair, and not for the same reason most of the kids were. Having seizured for the judges at County, she didn’t want a repeat performance on that score. Luckily she was fine, and it was a really fun experience.

Of course, the entire trip wasn’t seizure free, but hey: now she can say that she had a seizure on Hollywood Boulevard.