Tag Archives: clonazepam

And the results of Connor’s EEG are….Mom is clinically insane!

What a lovely evening. I am lying. There is a possibility we will be discharged tomorrow instead of Friday. If there is a God, he will get me out of this place. Oh, Connor’s fine. But I’m going mental. I can actually handle staying here, no problem. It’s the not having control thing that is making me completely insane. Tonight the meds came an hour and 15 minutes past his med time. By then I’d had to give in and feed him although feeding him is essential to getting the meds into him, and we’d missed the window to put him to sleep. So my baby that goes down no problem 98 percent of the time, screamed for an hour, and now continues to stir every so often and wake up to cry enough so that I have to pat him back to sleep. Just when I thought we established a firm schedule of the meds being 40 minutes late. Look, if you won’t allow me to do it, then you gotta bring them on time. And if you’re understaffed and it can’t be done, well, then you’re gonna have to let me freakin’ do it. I’ll sign a damn waiver.

So, the big news! What do we know so far? Our neurologist stopped by to talk about what he’s seen so far on the EEG. Connor has had a few episodes now which could clearly be seen on the video and the neurologist has gone over the activity that coincides with those events…and the conclusion is: Drum roll please!!!! (you better be pounding your desk at home)

Nothing. We still don’t know. Nothing is there. No seizure activity is appearing on the EEG. Everything looks good in the abnormal way the EEGs of people with TSC can look good (meaning it is normal for people with TSC to have an abnormal EEG due to the tubers, even if they are having no seizures).

WTF, baby. WTF.

Since all the activity is with the eyes he added two more electrodes right next to them to see if that changes anything. So we shall see. I suspect we will check out knowing no more than when we came in. However, we may be increasing the keppra as his episodes got shorter last time we did. And possibly going down on the klonopin (clonazepam) as that never seemed to do much.

So, I’m glad the EEG looks good, but ummm, apparently we need to work on Connor’s attitude because he rolls his eyes at me at least 50 times a day. Just kidding. I don’t know what to think.

I just scanned over what I’ve written so far and it reminds me of why I hate baby discussion forums. Everyone talks in acronyms and I got sick of having to google everything they said.

The day was otherwise exciting as the kids got a visit from the seizure dog today. Connor loves dogs. I’m bummed I wasn’t able to snap a pic of the big smiles he had when the dog came in. It makes me really want to get him one, but Chris and I both agreed they were too much work. So we had a baby instead.

seizure dog 2

seizure dog

Connor also managed to massacre the electrodes on his head today. Two factors contributed to this. One, he inherited this crazy gene from his father that makes him sweat even when it’s 20 degrees out. Two, he likes to yank on things, especially wires and hair. Once he had created a sweat lodge inside his gauze turban, it was all over. It started to unravel around 4. Previously someone had come in right away if something came loose, but this time no. I casually mentioned it to a nurse, but I guess I didn’t properly express the imminent danger of these tiny little hands. Later, Aunt Donna came to watch while we went to dinner. It was straight raggedy by then. And when we returned, I guess one of the techs had shut it off from their remote monitoring station (perhaps located in the Lost hatch?).

Just then the nurse arrived, so I addressed the elephant in the room.

“So we’re here for an EEG, and jeepers this is awkward, but there is no EEG. Does this mean I can go home and hit the Jack Daniels?”

I will say, someone was there shortly after to redo it. Shift change had just occurred. When I replied 4 o’clock to her inquiry about when this started coming off, her expression was, well, I will call it “interesting.”

Connor would rather go get a frappucino.
Connor would rather go get a frappucino.
Yup, data is looking a little questionable.
Yup, data is looking a little questionable.
I look away for 2 minutes and he's draped himself in wires and other medical material.
I look away for 2 minutes and he’s draped himself in wires and other medical material.
EEG part deux
EEG part deux
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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.