Michaela's next appointment with Chief is a week away. Normally this is no big deal. Well, actually, let me rephrase that: Normally it's a big deal that doesn't bother me. Like, when she's failed another drug and he wants to see her to figure out if she's in Non Convulsive Status. That's no little thing, but, it's generally not life threatening, and he's a good doc, so he'll fix it. No BIG deal. Just another blip on the screen of the dogfight called Michaela's Brain.
But this time is different. Yes, she's failed another drug. Yes, he's going to change the meds again. But this time, the options are fewer, more dire. The next drug on his ever shortening list is called Felbamate.
Felbamate has a sordid past.
Felbamate has killed kids. So, Felbamate was ripped off the shelves. Now, Felbamate is on parole, hoping to get vindicated for good behavior.
And Felbamate is supposed to be a miracle drug for kids with Lennox Gastaut.
I'm not so sure I like the risk. We're not in Kansas anymore Toto. Now we're in the Wicked Witch's Castle, trying to steal her hourglass and make it out alive.
The problem with Felbamate is a condition called aplastic anemia. It can be fatal if not treated quickly. What's quickly? That's what I want Chief to tell me. Cuz, believe you me, if I got to find it quick, you know I'm gonna be watchdoggin' for any early sign of it. Which is no big deal, cuz she's either with me or her very skilled teacher all the time. We can deal with this.
But it still scares me.
And then there's the problem with insomnia. A very undesirable side-effect, even if it is lower on the "serious scale". Michaela has seizures all night long. Her brain hardly rests at all, hence her developmental problems. The last thing she needs is to have her seizure activity under control, and STILL lose sleep.
And these are just the problems with Felbamate that I KNOW. Never mind what he's going to tell us next week that we don't know yet.
Chief knows I'm scared. I told him to book a day for when Chris can be there, because it's a big decision and I don't want to make it without him. So he booked an hour on a day of our choice. I don't think he usually does that. He'd be crazy to spend an hour with every patient (I worked in medical billing--it's suicide for business). And he knows that usually I can handle all this medical stuff by myself, and that Chris is OK with that. Chris knows that I know way more about it all than he does. He's fine with me relaying visits and treatments back to him when we get home. But now I feel like we're in the big leagues, and I need my coach to give me a pep talk to let me know I can do this.
I need the wisdom of Solomon, to be honest.
Perhaps I'm blowing this all out of proportion. It may be no big deal. But it seems like it is. For the first time, I feel as though I'm exposing Michaela to potential harm, willingly. Like I'm throwing her to the lions. Hoping she can run fast enough. It's downright scary to know that your subjecting your kid to something dangerous, all in the name of helping them. How twisted!
Is this why doctors have a ......"practice"?
***
I'm also going to mention quite a few things to him that are bothering me about her physically:
~She drools. A lot. We did not buy this house with an indoor swimming pool, but we've since acquired one. It's that bad.
~She doesn't have the kind of control of her mouth that she would need in order to clean the inside of it. I can't imagine what's growing in her teeth. I've gotten a toothbrush in there a couple of times lately, but that's still not enough to keep it clean. Never mind all the fluoride she's ingesting because she can't really spit the toothpaste out.
~Her feet are getting contorted in some pretty funky positions. It's not all the time, like kids with CP have to deal with, but it's often enough to worry me. I really don't think anyone's left foot is supposed to point to 9 o'clock, do you?
~Her arms are spastic. First of all, she quakes all the time. Like little muscles spasms. And then her arms, mainly her left, seem out of control. It thrusts out all the time. Incoming!
~Mentally, I'm scared for her. I really feel as though she gets trapped inside her increasingly dysfunctional body. Even when she can't talk, it looks as though she wants to tell me something. Or, she'll finally be able to say something, and it blurts out like a underweight baby with a big head. She just can't relay what she wants, or needs, or is bothered by. It's as though she has ALS, not LGS. What a horrible thought!
~She drools. A lot. We did not buy this house with an indoor swimming pool, but we've since acquired one. It's that bad.
~She doesn't have the kind of control of her mouth that she would need in order to clean the inside of it. I can't imagine what's growing in her teeth. I've gotten a toothbrush in there a couple of times lately, but that's still not enough to keep it clean. Never mind all the fluoride she's ingesting because she can't really spit the toothpaste out.
~Her feet are getting contorted in some pretty funky positions. It's not all the time, like kids with CP have to deal with, but it's often enough to worry me. I really don't think anyone's left foot is supposed to point to 9 o'clock, do you?
~Her arms are spastic. First of all, she quakes all the time. Like little muscles spasms. And then her arms, mainly her left, seem out of control. It thrusts out all the time. Incoming!
~Mentally, I'm scared for her. I really feel as though she gets trapped inside her increasingly dysfunctional body. Even when she can't talk, it looks as though she wants to tell me something. Or, she'll finally be able to say something, and it blurts out like a underweight baby with a big head. She just can't relay what she wants, or needs, or is bothered by. It's as though she has ALS, not LGS. What a horrible thought!
***
But the biggest thing I need to discuss is the fact that I want to take her to get evaluated by another neuro team in another part of the country. This is not an easy thing for me to discuss with him. Wouldn't you be offended if you were the doctor bustin' your backside for a kid you can't fix, doing everything you can, just to find out that the parents are going somewhere else? I guess some doctors might be relieved, actually. But I'm afraid I'm doing the equivalent of slapping him in the face. Like, everything he's done to decipher, study, consult, means nothing to us. We just want the "second opinion". To "prove him wrong". That's what I feel like I'm doing by taking her somewhere else.
But that's not my attitude about the whole thing, and it's not the impression I want to give. I HATE making people feel bad. I prefer to avoid confrontation like the plague. And even though I'm not truly confronting him, it is a difficult subject for me. I've had to do it before, and I hated every minute of it. Maybe it's because she's never had a doctor I didn't like to some degree. I'm a people person--I can find something nice about everybody. So to hurt someone's feelings just kills me. Mainly, because I don't mean to do it.
But I just HAVE to try something that may help her. I want to bring her to, arguably, one of the best epilepsy facilities in the country. To see one of the best Pediatric Neurosurgeons in the country. So that he can potentially tell me what Chief already did: No one can significantly help her. Crazy, I know. But there's a small chance that he CAN help her. The "what ifs" would kill me if I didn't at least try to get an audience with the man. Then I would know that I've done everything a Mother can do for her child.
Maybe my mind could rest just knowing that.
But that's not my attitude about the whole thing, and it's not the impression I want to give. I HATE making people feel bad. I prefer to avoid confrontation like the plague. And even though I'm not truly confronting him, it is a difficult subject for me. I've had to do it before, and I hated every minute of it. Maybe it's because she's never had a doctor I didn't like to some degree. I'm a people person--I can find something nice about everybody. So to hurt someone's feelings just kills me. Mainly, because I don't mean to do it.
But I just HAVE to try something that may help her. I want to bring her to, arguably, one of the best epilepsy facilities in the country. To see one of the best Pediatric Neurosurgeons in the country. So that he can potentially tell me what Chief already did: No one can significantly help her. Crazy, I know. But there's a small chance that he CAN help her. The "what ifs" would kill me if I didn't at least try to get an audience with the man. Then I would know that I've done everything a Mother can do for her child.
Maybe my mind could rest just knowing that.
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