Record Breaker

KayTar had an episode yesterday.

It didn't end until today.

Yesterday, around 1 in the afternoon, she called out, "Mom, my eyes are sick!" and quickly followed that with "I feel spinny!" She was leaning her face against the sofa in an effort to stabilize herself. I took her to lay down and gave her transdermal Zofran, just in case. She was completely lucid for an hour, only complaining of the dizziness. She couldn't sit up or stand, which she thought was hilarious at the time. She was acting a little goofy, too. During this time I noticed her eyeballs making tiny back and forth circular movement, like nystagmus, but rotational rather than side to side or up and down. They were very small scale movements, unlike the larger rolling eye movements we've seen in the past with these.

About an hour into the episode, she started vomiting, and that was quickly followed by the onset of the lethargy and pain. It was extremely painful for her. She would let out scream after scream when the pain hit her, then it would subside...then reemerge. I gave her Lortab, but it didn't seem to touch it. She continued to vomit in spite of the Zofran, too. She was incredibly light sensitive, too. We blacked out the windows and turned out the lights and she still kept a blanket on her face. It went on for hours. Seventeen and a half hours.

I went to bed, next to her, around midnight. I wanted to get a little nap because I was sure it would be over soon and she would be wide awake, but that didn't happen. She woke several times in the night, but was still unbearably light sensitive and sick. This morning she woke up around 6:30, back to her old self, all the symptoms were gone.

To my recollection, this is the worst episode she has ever had. The previous record for length was only 11 hours. The last time she had one that involved pain, it was April 2007. They are coming regularly again, it has been 38 days since the previous episode, which was 38 days after the one before that. We don't know why the episodes stopped for six months, but it is obvious that these are now back, following a schedule just like they used to.

I felt useless yesterday. I gave her medications, made the room dark and quiet for her, wiped vomit from her face and body repeatedly, but I couldn't do anything to help her. The medications weren't effective against this. As dark as the room was, it didn't relieve any of her agony. As soon as I wiped away the vomit, more spilled out of her. I could do nothing except wait for it to end, wait for her to feel better, wait for her to come back to me, and this time it took much too long.