Another Tough Day

Kamryn slept well last night and woke up bright-eyed and bushy-tailed this morning. I was thinking that the loading dose yesterday had done the trick. But alas, I was wrong.

At 11:30 am Kamryn had a seizure and when I contacted the neurologist (I actually talked to him, not just his nurse!) he suggested coming to have her phenobarb levels taken. So I got us all dressed, headed out, and dropped Kenedy off at Scott's office on the way.

At the neurologist's office/lab, the pulled blood, which Kamryn didn't much care for. However, they got it on the first stick, on the inside of her elbow. Woohoo! No more head shaving!

I figured I'd have her weight checked while I was there to get an idea of how much she's grown since our last bout of seizures. The lab didn't have a scale, so the directed me back to the pediatric practice, who directed me to the actual neurologists office, who made me wait for a nurse, just to get her weighed. All I needed was a scale, I know how to use it; no help required.

While we were in the waiting room at the neurologist waiting for the nurse to come out and help me get her weighed, she had a seizure (around 2 pm). I told the receptionist, who said she'd go get the nurse. It was the nurse and the neurologist that came out to the waiting room for the last third of her seizure. He said I could just go a head and come back so we could talk after he finished with this last patient. (We weren't scheduled to have an appt with him until next week.)

We talked and decided to go ahead and give her another loading dose of phenobarb today, and keep her regular dose at the 5 ml we had changed to to yesterday. He suspected that we had likely just outgrown her dosage. Of course, we didn't have the labs back to confirm that, but it has been the case historically. If for some reason she doesn't respond to this dose, we may have to visit the hospital this weekend.

She got the loading dose at around 3 pm at home, and we packed up and headed out to San Marcos for Jody's birthday. I called the doc around 5pm on the way to check on the bloodwork and he said that her phenobarb level was at a 24, (her happy number is in the mid 30s) and that was after the loading dose we gave her yesterday. So that likely supports our theory that she is just outgrowing the dose and metabolizing it faster. We'll talk in more detail at her appt next Thursday. She hasn't had a seizure since.

Hopefully this is the last you'll hear from me for a while...