Postictal

He drools more than he used to.

It’s been almost two months since Charlie’s big seizure–the one that handed us a two day hospital stay and a second medication. Since then I’ve definitely noticed some changes in Charlie and they aren’t at all what I expected.

Probably six seconds after they prescribed that second medication–phenobarbital–I thought to myself, “yeah, that’s not going to work.” I’m pretty sure I was shopping for an alternative before I even left the hospital (gotta love a smart phone).

Phenobarb had been Charlie’s first anti-seizure drug and several years ago I made the decision that it wasn’t working for us. Classified as a barbiturate, I worried that the drug was putting up a wall of fuzz between my son and the world. It was a pretty big move at the time–full of apprehension on my part–but I thought it was well worth it. After we switched to a different drug, he had a visible “waking up” period where he seemed more alert and tuned in.

Obviously I didn’t want him to go back to living in a fog, so I knew that as soon as possible, we’d be getting him off of Phenorbarb.

Thing is–he’s been incredibly happy since the seizure. He laughs more and complains less. He smiles so much more. He sleeps better too. He regularly sleeps straight through the night and if he does wake up, it’s easy to get him back to sleep. Slight variations in routine don’t destroy him like they used to.

boy crawling

Not the most flattering image for anyone, but look at him!

Perhaps most importantly, he’s started making some really great advances physically. He’s getting up on all fours and he crawling. Crawling! Some bunny hopping too, but some real-deal crawling. It’s amazing. And then the other day he picked up a sippy cup and used it better than he ever has before–there’s usually a lot of chewing and dribbling–this time he did it perfectly. I said tentatively to my husband, “I think he’s better than he was before–don’t you?” and he quickly agreed.

I guess I’m going to have to get used to the drool.

Postictal is a technical term that describes the period directly following a seizure–usually no more than a couple of hours. I took a little poetic license in naming my post this.

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Comments

  1. Go figure, Katy! Well, whatever the cause, that is awesome! Go, Charlie!!

  2. So glad to hear that he’s doing well physically, that is awesome, Katy! :D

  3. Yay for Charlie! I wish someone — anyone — better understood what happens in the brain. In the months following some of Phia’s big seizures, it really seemed like her speech took a small but notable step forward. I mentioned it to her neurologist, and he just gave me kind of a funny look and a nod. I’d never hope for seizures, but if anything good happens afterward for whatever reason, then great…. I’m glad Charlie seems to be experiencing this! Now, if only someone could figure out the magic of the brain and replicate what works!

  4. This made me so happy to read! I love those little curls he’s got going in the back.

  5. Hey Katy… Should you ever be interested in battling the drool, maybe you can experiment with a prescription of Robinul. After Oia’s 2nd yr of public preschool, we decided to give her a minimal dose of this compound med on school mornings to limit the drool. It nicely reduces, but doesn’t eliminate, the drool and it’s short acting. Helps keep her chin dry and peers don’t comment “eeeew, she’s drooling!” as often. So glad we were told about this…

  6. WOW! That is pretty awesome news. If you have to deal with the seizures, it’s good to know that they can be a catalyst–of sorts–for new growth and development. However one looks at it, wow, just wow! Go Charlie! I love posts like this one! So happy for you all!

  7. So is Charlie on the phenobarb now? And doing better? or just better after the seizure? Charlie is a special baby… one little miracle after another… and I would love for doubting doctor’s to see him now!

    Love that baby so much!! Go Charlie Go!!