Tag Archives: vigabatrin

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.