Wow! I was on a roll for a little while there. Kels has once again lost seizure control and so we are back in the cycle of playing with medications to see if we can gain it back for a while. She's been having more and more auras and seizures over the last couple of months, but the kicker was last week. She was on campus between classes when she lost her vision. (Quick aside -- were you aware that most community colleges do not have on-campus nurses or infirmaries? Yeah, neither did I.)
I called her neuro to report in with this relatively new aura symptom and he was concerned enough to send us to the ER. After looking her and checking her out, it was decided that this was probably the beginning of a massive wave of seizure activity so they load-dosed her with IV Dilantin, which she immediately had a reaction to. It not only burned her veins, but caused her blood pressure to drop some. After flushing the line and trying twice to give her the IV Dilantin, it was decided to give it to her orally and have us double-up on her regular seizure meds for the day.
Last Friday when her neuro called to say that he would like to keep her current seizure meds (Keppra, Lyrica, and Klonopin) as they are because the dosages are already high, and add Lamictal back to see if it works for her control. Right about this time her brain activity got so overwhelming that she began to lose sleep and then total insomnia while being so very tired she couldn't hold her head up. So her psychiatrist added to the Lunesta a short acting Ambien to see if helped. Last night was her first night taking it and it seems to help some. Between the Klonopin, Lunesta, Ambien, Melatonin and Benadryl, it's a wonder she doesn't just conk out "thinking" about bedtime. Geez -- I'd be a zombie.
In other news...Right after we got the ER last week, I decided that we would out of courtesy let the ex know via text that we were at the ER for preventative reasons per the neuro (even though Kels didn't want him there and she IS 18 and could have prevented it). Instead of seeming concerned, the text we got back was angry-sounding and demanding to know when this happened, why didn't we let him know sooner, and had we planned to tell him at all? Not immediately asking about Kels, but all about the anger and accusation. I am SO very tired of all of this. The girls choose not to be around him and we constantly try to encourage them to talk to him, spend time with him. They just do not like to. He believes (and I know this for fact because he has stated to me and to the girls multiple times) that I prevent them from seeing him. That I trash-talk him in front of them. That I am withholding "his" children from him. This has NEVER been the case, and it is extremely frustrating to be accused of something over and over and over that isn't true. He would much rather believe that I have something to do with his kids not liking to be around him than the fact that it just might be his own attitudes and behavior.
I need to quit before I rant too much longer.