High Hopes

This month has been a major roller coaster for our family. Rayleigh had a seizure on New Years Eve, December 31st, around 7pm that lasted about 40 seconds. It looked like her usual seizure: face reddened, arms locked up and pulled into body, legs locked up and curled in, labored breathing and then her deep release sigh and some myoclonic jerks as she was coming out of the seizure. It was intense and awful.

Then we started to notice her going several days without a single seizure. In December Rayleigh was having 1 seizure every 2-3 days. In the months prior to that she was having 1 seizure every day, maybe even 2 seizures a day but then late November she started the Clobazam anti-convulsant medicine. So starting January 1, 2011 Rayleigh went a full week without a seizure, then it was 8 days, 9 days, 10, 11, 12 days. 12 days with no seizure. Rayleigh was more alert and in a better mood all around. Michael and I were less stressed during naptime and when she would wake up.

Then around January 12th Rayleigh and I got sick. We were both running fevers and feeling awful. On that night Rayleigh got practically no sleep and ended up having a seizure around 2:30am. The seizure was very small and short and Rayleigh didn't seem to be in any pain from it. We were upset that she had a seizure because a small part of Michael and I had thought she was outgrowing them but at the same time we knew it was likely. Dr. Coleman, Rayleigh's pediatric neurologist, had told us before that anytime she is stressed, sick or sleep deprived she is more likely to have a seizure than other times.

Then she went a few more days without a seizure. By January 19th she had only had the 1 seizure. Michael and I were ecstatic. We were sharing the news with everyone, "Rayleigh has only had 1 seizure in 19 days!"

Maybe we jinxed it.

On January 20th we had a regular checkup with Dr. Coleman. We told him the news and asked about weaning Rayleigh off the Phenobarbital to see if the Clobazam was doing all the work. Phenobarbital has a lot of side effects that we think are affecting Rayleigh's development and would love to have her off Phenobarb completely. Dr. Coleman thought the request was more than reasonable and said to wean her off slowly, 1ml less each week. Rayleigh was on 12ml a night at that point so that night we took her down to 11ml.

She takes her medicine each night around 8:30pm.

At 11:30pm that night Rayleigh had been asleep in her bed for 15 minutes. I went in there to adjust the monitor before going to sleep myself and saw that Rayleigh was waking up. I bent over to give her the plug-plug (pacifier) and she went into a seizure. My heart stopped. I grabbed her hands to make sure that she didn't scratch her face and called to Michael.

It was not very intense like her old ones were. She didn't make any noise going into it, her face didn't really redden too much, arms and legs locked up and curled into body, the whole thing only lasted 20-25 seconds though. We brought Rayleigh into bed with us and she fell asleep shortly after. No whimpering or crying at all and didn't appear sore.

Michael and I were shocked. Is this from the dose decrease? Would we really see results that fast? Was she sleep deprived today? Was she stressed? What brought on this seizure?

The next day at 1:30p Rayleigh took a nap so I had her in the same room with me so that I could watch her. With how quiet the one the night before was I knew that I wouldn't have known she had one if I wasn't in her room at the right time so I wasn't going to have her sleep out of my sight. Sadly, she woke up and had a seizure about 5-10 minutes into her nap. It was identical to the one the night before and she went to sleep right after. I called Michael to let him know and he called Dr. Coleman.

Dr. Coleman told us that he can't really verify what's bringing them back on all of a sudden and doubts that the medicine dose decrease would affect Rayleigh so drastically so quickly. He told us to keep an eye on her and let him know if she continues to have them throughout this week and if so we'll increase her dose back to 12ml and see if that controls them again. Rayleigh has also gained a few pounds in the last couple of weeks so maybe she was outgrowing the dose of Phenobarb as we decreased the dose and it was just too much at once.

We will be taking her to get her blood drawn for Phenobarbital level testing this week to see if she is still in the normal range.

Rayleigh had one again this afternoon during naptime.

We went from 1 every 2-3 days to 1 in 19 days and now daily. We are feeling discouraged but are working hard to get her seizures controlled again.