Thursday, October 15, 2015

No botox (yet) and impromptu EEG

I'm not sure how well Reagan slept last night. She was very still (but stiff) and laying in bed, opening and closing her eyes off and on. I decided to go ahead and give her clonidine, hoping it would help her sleep soundly. Not sure if it did or not. She was quiet, so it's hard to tell if she was awake all night or if she slept well and woke up just before 8! She was awake at 8 when her nurse got here and she was SOAKED in pee! Poor thing. Laying in one position all night (on her right side), it all just leaked right out! So a complete outfit and bed change were in order. Still very tense in her body this morning with lots of clonus (where her leg will just tremble until you reposition it). Her PT came early because of our afternoon botox appt. During her session, Reagan was sitting on the floor in between her therapist's legs, with her head turned to the right essentially taking a little break (they had been stretching)...when all of a sudden she turned her head fixed to the left, stiffened out and started shaking (eyes fluttering all the while). VERY seizureish. It didn't last long, maybe 10-15seconds and then she snapped back out of it, loosening up and turning her head back to the right. Ugh. I immediately got on the phone with the home EEG company to see how soon we could get them out here. They said they could hook her up this afternoon! Done. Reagan seemed a little more relaxed after getting whatever that was out of her system. OT came shortly thereafter and worked some more with her on stretching. She still had a lot of clonus when OT started but by the time she finished it definitely seemed better. Her OT said she's still got a lot of tone today, but a different sort of tone to the crunchy tone she had last Tues. So after our crazy morning we weren't sure what to do about the botox scheduled for the afternoon. We decided to go ahead and just keep our appt and go in and tell the PM&R doctor about our concerns with her increased tone, she totally agreed that it was worth a shot (and also mentioned that there are now other toxins to try if botox doesn't work). Unfortunately, due to our short notice appointment and insurance being insurance, they only approved a small dose. Way too small for her size and to treat both legs. We decided to just wait until they could get approval for more. So that'll mean rescheduling her already rescheduled AFO appt next week as well. Ugh. So while we were gone we got several calls from the EEG company delaying Reagan's hookup time (the techwas having car problems). So tonight, around 8pm, he finally showed up! We got her all hooked up (she was such a good sport...just wincing here and there from the air compressor). She did have a big (unprovoked) startle just as the tech got her hooked up, so I'm not positive if that was recorded or not! She did it again later when I blowed on her but only once (and I blew on her several times). There were also some suspicious right arm stiffening (and head turning to the right) that she did as she was dozing off. Glad we got some of these things recorded, but I could've done without so many. I hate to see her doing anything seizureish! Hoping she can sleep tonight and not mess with the electrodes on her head. We shall see...
Giving her nurse a big squeeze (totally uncharacteristic of her) after getting her weight at the drs office! Still 52lbs.


Not happy but calm.

1 comment:

charity said...

praying for good results from the eeg.