Tuesday, October 14, 2008

The Worst

This is the worst seizure day I can remember. She's been off the Topamax since Friday the 10th, and I don't know if some of this may be with drawl or what. That has got to be the worse thing about having a medicated child! You never know what to blame! Is it the medicine, is it lack of medicine is it a sickness??? She coughed on and off all last night, and anytime her sleep is disturbed she has a worse day. Today she had 100 seizures in 15 minutes. I called Cleveland to see how they felt about us getting a prescription for diastat since it'll be 13 twelve days before we go start the Ketogenic Diet. A nurse practitioner called me back within an hour (you got to love that!) and she said she thought it'd be a good idea and while we're at it lets do a blood draw to see what her Keppra levels are in case her dosage can be raised. I'm pretty sure she's at the max for the Keppra but checking her levels can't hurt. I checked Naomi's temp. after she was done seizing and it was 100.8 rectally and so I gave her Tylenol then at 10:30 ,exactly 4 hours after giving her Tylenol she started with more seizures. These were way lighter, most just a hiccup of a seize so I went ahead and gave her Motrin because it'll last longer. I thought her forehead seemed a little warmer anyhow. So far so good, she took a nap in the afternoon for an hour and woke with out seizures. I'm taking her to her pediatrician this afternoon to see if they can give her something for the cough so she can sleep better. Even during her hour nap the poor thing was woken about 3 times from coughing. There's no nasal drainage it's 100% in her chest. I had the same crud about 2 weeks ago, still have gunk in my throat.
Let me clarify the 100 seizures in 15 minutes. She starts out slow with her seizures. They start out very light, maybe just a facial expression change. That part lasted about 3 minutes then they get a little stronger, sometimes her eye waters and you can hear her bowels grumble (it's odd but she's gassy a lot after a seizure) so for about 7 minutes they were almost rhythmic, every few seconds apart. Then about the 10 minute mark they tend to start to slow down and for the next 5 minutes I think, "okay, that was it, ooppps no there's another" then more time goes by I think she's done and so on. Usually when she's done she'll start drinking from her cup, want off my lap or something. Yesterday even she thought she was done, (yesterday was bad too about 90 in 13 minutes) but I knew she wasn't done and kept hold of her so she wouldn't fall.
I'll just be happy when

1 comment:

Fawn said...

Sorry to hear about this. Jade's going through a rough time right nwo, too, and I'm also wondering if she's going through withdrawal (Clonazepam).

I think we count seizures differently. If I were seeing convulsions every few seconds for several minutes with no recovery during that time, I would count that as one long seizure. It's kinda good to know this because I'm sometimes astonished at the reported number of seizures in some kids and wonder how they can possibly have so many.

Jade is still responding to Valium as a rescue med, but it's becoming less effective -- that scares the hell out of me! We got a prescription for Medazolam which means we can give it to her orally instead of rectally. I just wish I knew there was an end in sight! Maybe we're going through this now so that the diet will seem easier...

I'm so excited to see how Naomi does on the diet. I'm keeping my fingers and toes crossed for you!