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.

Stopped

In order to go on with the business of life, you have to tell yourself a certain number of lies.

One of these lies is that the way things are now is the way things will always be.

Charlie hasn’t had a seizure since six months of age and at some point I stopped worrying about them. I didn’t think they were an impossibility–seizures occur in people with no brain issues and we’ve got hardware and areas of significant damage–I just assumed that if and when the seizures did come, I would be able to handle them.

So when my husband came in our bedroom on Friday night and reported that Charlie was having a seizure, I was calm. He brought Charlie to me and I held him in my arms and waited for it to pass.

But it didn’t pass.

Emergency meds didn’t help either and before I knew it we were strapping his seizing body into the van so I could take him to the emergency room. I got about six blocks before I realized I can’t do this. I swerved in front of town hall and waved down the police officer doing a detail at Friday night bingo (it’s a small town). EMTs came immediately and made sure Charlie was OK while we waited for an ambulance.

Forty minutes later he was still seizing and a nurse tried to reassure me as I began to cry. It’s Ok, mom.

It was most-definitely not OK. No matter what that lady said. They inserted an IV in one arm and drew blood from the other.

A dose of IV meds and he stopped twitching, but still wasn’t moving.

A second dose and he started to move–except his left side, which was paralyzed. He smiled at me a lopsided smile–loopy from the drugs. His good arm–the one he uses to eat and drink and communicate–lay motionless at his side. My stomach lurched, taking in this new development. Grinding my teeth, I smiled back.

Boy sleeping with oxygen canula

Took this one so Dad could see his boy was OK.

Once he was out of the seizure, they loaded him up with another heavy-duty dose of anti-epileptics and arranged to have him transported to the Big Hospital where his neurologist works. It had been ninety minutes since he’d begun seizing at our house. A long, frightening 90 minutes.

We spent Friday night in the hospital and all day Saturday sleeping off the effects of the gallon of drugs they had to give him. We’re home today (Sunday). Late Saturday evening he seemed to be fully recovered–able to point and select with his left hand and no signs of the droopy-sided smile.

I’m reminded for the zillionth time that life can change in an instant. We are lucky this time, but there are no guarantees. I don’t like to think about it much more than that. You can’t go down that road and stay sane. I’m grateful for what is and that’s all I’m going to think about right now. Squeeze your babies tight, y’all–you just never know.

Boy smiling with iPad

Back to his usual self.

 

The Beat Goes On


Today did not go the way I hoped it would. Not at all.

Today I took August to the ENT and really, I shouldn’t have bothered.

Before we even got to the appointment, I knew that August was “off.” By eight AM he had deep circles under his eyes. He was distant, and not at all his usual, cheery self. He ignored other people, which isn’t like him. He was unusually clingy.

So we get into the doctor’s office and I SWEAR August has never looked more Autistic. He literally sat in the office and waved his hands in front of his face and completely ignored the doctor’s attempts to interact with him. He wanted nothing to do with her and that was abundantly clear. The doctor, who was very nice, found no fluid in his ears and he passed the hearing screening.

This leaves us with approximately zero answers. The doctor’s first recommendation was that we make an appointment with a neurologist, which is the exact opposite of what I wanted. She also told me that I’m already doing everything I could possibly do.

I’m really unsure what my next step should be. I’ve known the pediatric neurologist for almost five years now and I have a pretty good idea of what she’s going to say–she’s also going to rely heavily on my opinion and report and I have no idea what I think. I don’t know autism. I mean, if this is autism, it must be really mild. Or unusual. My gut is saying it’s not autism–that it’s something else. It could be that he just inherited the calm, quiet, solitary personality of my husband. It might be an auditory processing thing. It might be a twin thing.

The doctor discussed doing a hearing test under sedation (ABR), and we might go that route. He’s also going to be getting speech services and I’m hoping that will help us figure out if this is developmental or hearing related. The most frustrating part for me is knowing that in a few days he’ll probably be “on” again and these issues will be pretty much invisible. And what side do I want the doctors to see? I’m not sure.

In all of this, the worst part was the warm fuzzy words from the doctor about how even if he is on the spectrum that doesn’t mean he won’t amount to anything. Or something like that. When Charlie was little, and his brain was a disaster area, I really need people to tell me things like that. I craved professionals who were optimistic about my child’s future. But now? I don’t want to hear it. I’ve been there and bought the t-shirt. August is going to be who he’s going to be and my job is just to make sure he’s the best version possible. I’m really not sad. Maybe a little worried that I’m messing up my kids if I’m being completely honest, but I know we can handle this whatever it is.

boy playing with bead toy in waiting room

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