Sunday, April 22, 2012

STP week 4

Hard to convey how this med is going.  She was doing well, sleeping better, seeming to be better behaved, and then I added a morning dose.  On a Friday morning.  Then by Sunday we had a wreck of sorts on our hands, very tired, very uncooperative, just really not herself, so on Monday I lowered the Onfi by 5 mg. 

She is sleeping much sounder.  That is a plus, still getting one of us up at one point, but in between she is out.  Her naps have been really all over the map.  On Thursday, the drive to Chicago, she didn't nap at all, which was really worrisome.  Stayed up too late in the hotel. She slept all night, like a rock.  We got her to Children's Outpatient on time for her lab work and to see Dr. Laux.  She is thrilled that she seems more cooperative, she could do more neuro testing (touch my finger, follow my finger, walked and ran) and had not had any seizures since week one of starting the STP.
Dr. Laux and Margaret, and the new bear she got from the lab. :)

 I'm the one who lives on eggshells, wondering what we are doing in this whole mess of med changes.  She did manage a nap on Friday at the hotel after the appt.  Whew.  Had a pretty good night at our wonderful friend's house.  Caytie painted all of her nails, what a saint.  Printed pics off the computer to color.  Loved on all the dogs.  (4 total, even Ohio, the big guy)

CAYTIE painting her nails:

BJ, hamming it up.

She was up at 3:30 am on Sat. morning, pulling at her dressing from the lab work, yelling about all sorts of stuff.   Then at 6 in the morning, blammo, a big old GTC, searching for a magnet in the dark, disappointment abounding.  She hadn't eaten a good dinner, wasn't on a good schedule, all the cards were in the right order for a seizure.  The bubble is burst.  The car ride home from Chicago was horrible, lots of yelling, her eyes looking drugged, wanting to go back to the hotel, back to the dr., back to the lab for another "shot."

Dr. Laux said we would be doing a balancing act the next number of months, trying to get the right balance of STP and Onfi, and if we can, then maybe we can wean the Celontin.  Trading off tiredness for seizure control, until we get the right mix of everything.  If she's sleeping better, maybe getting rid of the nap.  I'm not sure what to do with her all day, the nap gives us all a break.  And she's 22.  Dr. Laux was so excited, because they really haven't had many Dravet adults on the STP, and we are showing that its helping with seizure control.  Is she sleeping better because she's having fewer seizures?  The STP skyrockets the efficacy of the Onfi, so that's why we lower it.  We'll get med levels on Monday, I'm supposed to email her so we can figure out the next step.  The sleepiness should decrease.  Do we increase, or stay on the low dose?  She said it would be great to stay on the low dose, something helpful to know for other Dravet adults.  I think of her as a kid, but she's not, she acts like a kid, has to be cared for like a kid, but she's 22.

1 comment:

Jennifer said...

We have lowered Melorah's onfi dose to 5 mg after a couple of months of crazy behavior. It was all over the place - I thought it was hormones but it seems to be the Onfi. Don't know why Onfi is so much more potent than Frissium with STP but it seems to be! Will be keeping you all in my prayers as you find the right dosage. See you soon!!! :)