So Audrey is officially back on her 2 week schedule. I was hoping she wouldn't have one today (day14) but she did at 6:30 tonight. So close!
Audrey has come up with another seizure type. BOO. (we're down to 1 type of seizure-tonic/atonic seizures or drop seizures, that she hasn't experienced yet) I don't like when things change.... it's scary and I don't know how to take it... should I be concerned? are things changing for the better or for the worse? So this new type is weird to say the least. She starts blinking funny with occasional eye roll back (which we've been concerned about before but dr. in Ohio said nothing to worry about) then she doubles over as if in pain, and screams like she's been impaled, then looks as if she's there but not mentally. The only thing I can come up with based on my internet research (because SL dr won't call me back personally like I've asked) is she's having a complex partial seizure. Good news... (since our 3 encounters) two have only lasted a couple minutes. I like having a break from 5-20 minute ones.
We've been working with the Dr in SLC, and he increased her Phenobarbital to 5 tablets. She currently is on 5 tablets of pheno and 2 of Zonisamide. From past experience I know that it takes at least 10 days for the meds to even out, but I was hoping an increase would just get us back on track. When we took her med levels last week she came in at a 17.8 (range is 15-40) so she was on the very low end. They like her to be somewhere in the 25-30 range. So here's hoping for things to stabilize and maybe we can get another blood test to see where she's at in the next week. My personal opionion on her meds are: Pheno- shortens the duration of her seizures. Zonisamide- actually stopped them from happening for 4 months... not sure why the change.
Poor girl, even these little ones just wipe her out. I'll be interested what the Dr thinks about these new ones. We have an appt in about a month so hopefully we can get meds at the right levels and then if she continues on her 2 week cycle, we can go "what the heck?!" don't get me wrong 2 weeks isn't all that bad... the predictability helps so I can schedule around stuff, but those 4 months were nice. Hopefully we can get things figured out... soon.
