Sorry it took so long to get to this. Everything seems so anti-climatic now. Perhaps I just needed to allow my brain to stop thinking about what it thought about, non-stop, for 2 weeks.
You know, reading that last line really makes me look obsessive. Was I obsessive about it? I don't think so, now that I think about it. Yes, I reveiwed Michaela's symptoms in my mind often. Yes, I thought about alternative options many times. Yes, I did some research. No, I did not sleep as much as I would've liked. But perhaps all those things are normal. I mean, this was the first time that Michaela's had a doctor's appointment since her diagnosis. I had a lot of questions. I had plenty of concerns. This is actually new to me.....a conclusive diagnosis. And it doesn't help that I'm a perfectionist. So, I wanted to make sure I was relaying accurate outgoing information, and that I could effectively absorb all incoming.
Because if I can't tell her doctor what's wrong with her, then no one really will. And if I can't understand how to deal with her condition, then we're all up a creek.
And that's not a shot at Chris. I'm just home more. I'm the Mommy, and it's a Mommy's job. Not to mention, Chris doesn't do well with medical terms and concepts, and I excel in that area, and have since I was a teenager. Well, I think I do fairly well for an common layperson, at least.
So, anyway. I made sure to have notes with me so that I wouldn't forget what I wanted to discuss. I even made a "cheat sheet" for whatever resident had the lucky priviledge of learning on my kid. I'm not being sarcastic. I was really hoping to not only help the "young doctor/student" get the info they needed to get, but I was also hoping to get out of answering a slew of dumb questions myself. I've been in their shoes before so I could sympathise. I was a green nursing student once, and we had to ask a bazillion stupid and unapplicable questions too. Except, in my case, I didn't always have the benefit of a competent patient (or relative)......I had a geriatric rotation. Can you say "Hard of Hearing"? "Dementia"? Yeah, not fun.
And of course, one of my more major concerns was bringing up going to another facility. It didn't help that when I happened to see Chief in the hall, he had something on his mind and wasn't his normal, peppy self. Of course, being the perceptive person that I am, I immediately thought, "Oh MAN. He is definately NOT PSYCHED about it. STINK." But, no, I was just being overly sensitive. He was fine with it, come to find out. At least, he tried very hard to seem OK. If he wasn't, then he's a good actor. But I would probably say he's cool. And that made me feel tons better. Hey, I can't help it if I'm conscientious to a fault!
Much of the appointment was spent going over some of the physical issues that Chris and I have been seeing. The mouth not working right. The feet turning. The tremors in her arms and hands. And the biggest thing that I came away with in this meeting was....it's all normal. Everything that's happening with her is completely and utterly common for LGS.
I've been having a hard time with that concept lately. It's a strange thing to change modes; go in the opposite direction. Because for most of her epileptic years, anything other than seizures, plain ol' seizures, was something to be looked into. Sometimes immediately. It was always something that needed fixing, perhaps even a little perplexing, if only considering that she "only has seizures" and not CP or something. So now I'm slowly switching gears. Realizing that these physical issues are not "phenomena". They are par for the course. We don't really "fix" them. Now we ease them, or adapt to them. And if we see them go away by chance, then it's a bonus. In a practical sense, it's like switching from potty training to finding the right size diaper--for a 4 year old. It's hard on the brain. It goes against the grain.
I also brought up my concern for her emotionally. How, at times, she seems to be aware of her environment, but can't communicate any needs or discomfort. Mentally, it's been a strain on me. No one would want their child to have to suffer in silence. It's like those awful stories of people who were operated on, but the anesthesia didn't work, and they could feel everything, but couldn't tell anyone. Now that's plain hellish to me. And I can't fathom my daughter living her life in a situation similar to that.
But Chief helped my feelings on this, and I'm not so uptight now. He felt that, in her situation, it wasn't like ALS where they can't talk even when their brain is fully-functioning. It's more like, if she can't get it out, then things aren't going in. In other words, she's probably in one of two situations: a seizure induced stupor that keeps her from being able to process her environment and talk, or a low functioning mentality to go along with that inablility to talk. He doesn't think it's like an 8 year old that can't express herself. It's more like a 6 month old that doesn't have the capability to be affected like an older child would. I can see this, now that he says it. It would make sense that even though she seems to "want" something from me when she can't talk, that she's probably just wanting me to appease some need that she doesn't even comprehend. Perhaps her diaper needs changing, or she's hungry, or she wants to be held. But it stands to reason that she's not in mental anguish over not being able to play her favorite computer game or something. She simply doesn't have the frame of mind to understand that, at least during that period of time.
OK, so all that was addressed. Then it was time to hear him out on the Felbamate. He had literature and a pamphlet and statistics and everything. So we listened. He read the drug labelling. He discussed the aplastic anemia and the liver failure problems. He gave us the math: the odds are that 1 in 12,000 get the anemia. I can't remember the liver failure. He told us about what those two conditions do. And he told us that they really can't catch these problems early. They try with lab tests, but that doesn't always give any warning.
But he also told us that her chances of dying from a seizure is 1 in 200.
Well, that settled it. It was either potential death from seizure or anemia. We were in a catch 22 and we went with the better odds.
This epilepsy thing just keeps getting funner and funner.
(Yes, I know funner is not a word. Sheesh, gimme a break, here.)
We got our prescriptions, and our drug titration schedules, and our lab paperwork. Scheduled an appointment with a dentist through the hospital. Got a note for the school to give her her meds during the day (first time ever for that). Got the lab work done. We shook hands.
And that was pretty much it. Another day in the life of a seriously ill child.