Tag Archives: Sabril

Well, I don’t like talking on the phone either, but IT’S YOUR JOB.

You might be wondering if we got Connor’s 3-day EEG scheduled. The answer would be no. Because, you see, anytime you schedule stuff hospital related, it doesn’t work like a doctor’s office where you get transferred to a person who schedules you on the spot. No. You leave voicemails for people who are supposed to call you back and don’t. They never do. And I’m getting really, really sick of it. The neurologist sent the order in yesterday morning, and the hospital is supposed to call me. By the end of business that day, I was quite antsy so I tracked down the department number on their website and got connected to the appropriate person. I got her voicemail (story of my life) which stated she was out of the office that day, but also explicitly stated that all messages left that day would be returned the next. Well, it’s 6 p.m. the “next” day and nothing. So I will be calling again first thing in the morning, at which time I expect to address a voicemail again, then spend the rest of the day seething. It’s no little thing trying to squeeze in three days in the hospital at the holidays! I’m stressing over two things. First, what if they don’t even have any openings for a ludicrous amount of time, like until next year? And then, what if the opening they do have screws up our plans this month? Not to mention it always takes forever to get the results, so the sooner the test is done, the sooner we can start the next phase of waiting. Waiting. Waiting. Waiting.

To top it off, I realized today that I have hung up on countless phone calls from the pharmacy that provides Connor’s Sabril. I’ve complained here before about my issues with them, so you might wonder why I would be hanging up on them repeatedly. Well, dear reader, this is why. When I call them I use an 800 number. When they call me it’s a 901 area code, Memphis number. But I only recently made this connection because every time I have answered the phone, nobody was there. It begins to ring on their end to connect me to someone, and then hold music begins to play. There is NO identifying information, even a recording, to inform you who is calling. Surprise! Like any normal person, I assumed this was some sort of telemarketing robo call. So I always hung up. Until I didn’t answer. Today I stayed on and was on hold for several minutes before someone came on identifying who it was. Great business model. Really.

I suppose I should bring something lighter in to close. I’ve figured out Connor’s favorite food finally. Of all things, it’s a combination of prunes and apples. PRUNES and apples. And you know what. It actually smells and tastes pretty good. Who knew? That might become his only solid if he keeps swinging his head back and forth to avoid the spoon like he does with some of the other pantry items.

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First Halloween: Check

I did a bad, bad thing. I went to Target today to see if the leftover Halloween decorations were on sale. Actually, disaster was averted because it had been picked pretty clean. I, the woman who wore the same costume for like six years only to pull out a costume from my middle school days this year, had to fight the temptation to buy three costumes because they were 50 percent off. Fortunately, I needed a bathroom and had Connor with me, as well as a full cart, so I had to rush out. I came away with just this:

Who can resist 50% off?

I also may or may not have been unable to resist the impulse to buy him Santa pajamas. You can prove nothing. Target is evil.

Connor really enjoyed his first actual Halloween. We didn’t do the Trick-or-Treat with baby thing since he weighs 976 pounds. Or 22. Can’t keep that straight. But he took a nice long nap, right through the ringing of the doorbell, shrieks of young children, and me laughing hysterically as two small boys in awesome, if not particularly flexible Lego people costumes hobbled across the yard. I’m worried he’s going to pick up my poor moral character in that I find it hysterical when a kid faceplants in my yard and flails about immobile until Dad comes to the rescue. Connor woke up in time to enjoy his first viewing of It’s the Great Pumpkin, Charlie Brown. Mommy enjoyed her own treat in the form of a Jack and Coke.

I also dressed up for the first time to pass out candy:

The leftover M&Ms have me in a good mood which is good for the pharmacy that provides Connor’s Sabril. Sabril is not available through regular pharmacies. It has to be fedexed to the house. Every time I have had to refill it’s been an ordeal because the prescription kept changing as we sought the ideal dose. Finally, this time was just a simple refill. No changes. Not to be. Not even sure how long I was on hold as I had them seek out the reason our prescription was flagged because supposedly the “directions were not written correctly.” Really? Because they were last month. Turns out some rep was confused because in one place the doctor wrote “at bedtime” and elsewhere “evening.” Ummm….what? I find it irritiating that it would be flagged due to someone’s apparent hangover, but even more annoying that some rep decides to flag it but takes no steps to look into it and clarify. Basically, he  or she left it to be my problem when it came time to refill. Had I not insisted it be looked into while I was on the phone, his refill would still be in limbo.

Obviously all my hopes lie in that Connor’s TSC will be a mild case, but regardless of its course, he will require more medical attention than other children, even if only for the annual monitoring. I’ve come to realize that a significant percentage of my life is going to be dedicated to repeated phone calls, sitting on hold, and writing nasty letters to billing departments because people are idiots.

This living one day at a time stuff is for the birds.

It has been a nice little reprieve the last couple days not seeing any of the eye rolling incidents he’s been experiencing. But I’m not tempting you, Fate. No need to show me who is boss. I know not to celebrate good things. He could have one tomorrow or in 5 minutes, so don’t think I’m getting all cocky and thankful. I know that’s not allowed. Until the neurologist’s office called this morning to verify the  results of the EEG–no hips arrythmia and the only odd activity present is irritation from the surgery (what we already knew)–Chris and I hadn’t even acknowledged out loud the fact that we hadn’t seen any for two days. They remain a mystery until we can catch them on EEG. But the reality is that the EEG also shows a tendency to epilepsy because of the other tubers present. No seizures, just little outputs of activity as if to say, “Screw you. Did you think you’d wake up and TSC would just go away?” That’s TSC. It’s always there. You just don’t know what it will do. I totally understand those parents that enact vigilante justice when someone hurts their kid. If TSC could take human form, I’d stab it to death. Slowly. Only time will tell if epilepsy will be an ongoing battle for him.

The physical therapist came yesterday. Once again, she said he was looking really good. Very interactive, engaged, energetic and much more tolerant of being on his tummy. He’s adding more noises to his repetoire and playing with toys, all in the appropriate window of time…although he likes to push those windows to make Mommy nervous. She is thrilled, as am I, that we are weaning him off the phenobarbital. It’s pretty much the go-to seizure med for babies, but it’s a major suppressant of all activity, and longterm, is connected to cognitive issues. Connor often refuses to look his therapist in the face, even though he will make eye contact and giggle with us, because she is the mean lady that makes him work out for an hour straight. Mommy can be broken in less than hour easy. It’s kind of humorous to watch him swing his head back and forth as she tries to get him to engage with her. He’s not having it. She goes to the right, he goes to the left and vice versa. But she says this is good because he is distinguishing between people he likes and people he doesn’t. We’re really pushing him more to roll over. He can. He has. But he’d rather do this:

Where he started…
A few minutes go by…
Making a break for it!

A breakdown of his meds history:

When he came home we had to give meds 5x a day. It was hell. He was on:

Phenobarbital 2x per day 8am, 8 pm

keppra 2x per day — 8 am, 8 pm

dilantin 3x per day– 6am, 2 pm, 10 pm

I want you to seriously think about that schedule. Seriously imagine having to stop at all those times of day no matter where you are or if he’s sleepy to force him to take some crappy tasting medicine.

Then we weaned him off the dilantin.

He was only on phenobarb and keppra 2x per day for some time, but after surgery we never upped the dose again because we weren’t seeing anything.

Then the infantile spasms started, so we added Sabril (vigabatrin) and clonazepam. And now we are in the process of weaning off the phenobarb. So once we finish weaning, he will be on:

Keppra

clonazepam

Sabril

All two times a day thank God because I don’t think I can mentally handle more than that.

Is this glue on my head again?

At his EEG today

There’s good news and bad news. The bad news is that after another hour long EEG, we still aren’t really sure what the deal is with these eye rolling incidents he’s having once or twice a day. And unlike the last time, when we spent 8 hours in an office with electrodes on his head only to have an episode on the way home, this time he had an episode in the waiting room right before it. At least the EEG showed once again that the hipsarythmia brain pattern that previously presented with his spasms has cleared up thanks to Sabril. The doctor doesn’t seem certain whether these are spasms or not, although he can’t say they aren’t some sort of seizure activity. He was very pleased with how well Connor is doing though because he isn’t presenting like a child having infantile spasms. At any rate, we are weaning him off one of his meds, phenabarbitol, so that we can see if clonazepam is more effective at knocking out whatever these eye rolls are. There was still no seizure activity otherwise (thanks again to our surgeon), which leads me to the other good news: during the EEG today they tried to see if a strobe light would trigger anything. It had no effect on him whatsoever, so Connor’s going clubbing this weekend.

But at least we got to do something fun today, too! Well, I’m not sure he would agree with that.