Last Friday was our bi-annual schelp to Boston Children’s.
Dr. Neuro lives there.
And she’s kinda insistent we see her every now and then.
I’m such a big baby about it. Seriously, though. It’s a haul…and while I love Dr. Neuro and am thoroughly convinced she’s the right choice for us – it still stink stink stinks that we have to make that commute. Even if it is only twice a year.
The thing I love most about Dr. Neuro (other than her involvement in helping us get Trevy’s surgery approved) is that she listens and trusts me. If I tell her a little twitch is a seizure…she doesn’t second guess me. And I’ve been second guessed by neuros before. But she gives me the benefit (of having seen hundreds of thousands of seizures) of the doubt.
She did however look at me like I had two heads when I told her I’ve thought about just weaning him off of all meds.
After she composed herself she reminded me that his seizures are still not fully controlled.
I then reminded her…um, my point exactly…the meds aren’t controlling them! We’re still seeing seizures at least weekly. I know I don’t post about it often. But yes…Trevor still has seizures. Some weeks more so than others. We see clusters of myo twitching in his face and arm. And complex partials. The complex partials make me weepy. The way he looks so confused. And his words slur. It’s heart wrenching knowing that his brain is working against him. The little clusters of myos don’t really seem to affect him at all. He can remain completely engaged through them. While they don’t seem to affect him…they do me! It’s really hard to carry on a conversation with him when his eye and mouth twitch twitch twitch in what is clearly some sort of motor seizure. It makes me just want to hug him tight enough to squeeze the Seizure Monster out!
She reminded me that we wouldn’t know just how controlled these seizures are until we take away the meds. And she isn’t willing to play that game.
We did compromise and agree to slow wean Topomax.
After we get the results of his weekend labs and see if we need to make any adjustments to the other two AEDs…we’ll begin weaning one capsule a month. He’s currently taking 6 sprinkle caps daily. It’s the same dose he’s been on since before surgery.
I’m excited and worried at the same time. I’m excited to see if kicking the “dope”amax helps improve his verbal communication. Sometimes you can tell he’s trying so hard to think of a word…and he just can’t pull it out of his vocabulary file. Topomax is a known speech inhibitor. I’m worried because…well…every time we’ve weaned meds we’ve seen an increase in seizures. And even though I was all that crazy “lets go med free” talk before. The reality is…it scares the poopy outta me.
There are no easy choices.
He also needs an EEG. It’s been over a year. After a lot of discussion, we all agreed an inpatient at our local hospital is the best option. That’ll be booked for sometime in May.
She said we should probably have a neurosurge follow up since we never made it back to Detroit. Someone local’ll be fine.
She also made me laaaaaugh and feel validated all rolled together. She must have mentioned a dozen times how easily distracted Trevor is. What a handful he must be to care for. How we really need to think about an ADHD med.
I laughed because it was seriously funny watching her try to examine him. He literally cannot complete a task if there is any sort of distraction in the room. And only then with a ton of verbal reinforcement.
While she and I tried to chat he was climbing up onto the examination table. Which was close enough to step into the windowsill. He about gave me a heart attack by stepping into it! The epilepsy floor is 9 stories up! I’d shoo him outta the windowsill. And he’d climb back up the table again. Because it was just begging to be jumped on. I’d shoo him away. Then he’d go squirt Purell in his eye. I’d shoo him away. Then he turn the lights off and on – off and on – off and on. I’d shoo him away so he’d go to the sink. Turn the water off and on – off and on – off and on. He figured out how to open the door. Which of course then needed to be open & shutted multiple times in a row. Climb in my lap. Climb off my lap. Say “poop” and laugh. When no one responded with a laugh in return…he’d say it louder. When he got a laugh it was on to some other annoying activity! Much of which involved turning things off & on or licking them.
He was making Dr. Neuro positively dizzy!
I teased her that she wasn’t letting us leave without a script!
It was SO validating when she mentioned (multiple times) how much work he must be!
Yes…Trevy is a miracle. He’s amazing! And adorable! And I’m SO extraordinarily proud of him. Wouldn’t trade him for the world. And all that jazz.
But seriously, people, he’s EXHAUSTING!
One on one it’s not so bad. But I have 3 kids. And a dog. And a husband. And darn if they don’t all want to be fed, clothed and have some quality mommy/wifey-pooh time.
He literally needs 100% supervision 100% of the time.
And she noticed!
She saw the miracle and the work. Because it takes gobs of work to manage this little miracle!
I was so relived I almost cried on the spot.
And I didn’t even realize I needed someone to validate me until she did. It was like a light went off and I was like “I KNNNNNOOOOOW”! And then my heart did a happy validated sigh.
So that’s it.
We did labs on Saturday.
We’ll be slowly weaning Topomax.
He’ll be having an EEG soon.
We really should have a neurosurge follow up.
And we seriously need to think about ADHD med trials.
See ya in six, Boston.