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Wednesday, March 16, 2011

On the Seizure Front

Wanna know something strange about Keto kids when they get sick? (And possibly all kids with epilepsy.)

They either have increased seizure activity or they have decreased seizure activity. Sometimes no seizure activity at all.

Wanna know something else that's strange about Keto kids when they're on antibiotics?

Again, they either have increased seizure activity or decreased seizure activity. And, again, sometimes no seizure activity at all.

Christian happens to be a Keto kid who's seizure activity has reduced dramatically while he was sick and still while on antibiotics.

I've been warned that the seizures do come back, but Christian is three days off the antibiotics, no longer sick and I'm enjoying hardly any seizure activity for the time being.

We also had our first keto experience. See, this diet is so precise that even a mis-measurement of a single gram can set something off. Until now, Christian hasn't been seizure free enough to make any comparisons. But the other day, he was irritable and I thought maybe he was in pain so I gave him a half tab of extra strength Tylenol (which I have to use because he can't have sweetened children's Tylenol syrup and the regular tab strength doesn't work). Extra strength Tylenol has a higher carb content. He had clusters within the hour. Then he was fine the rest of the day and we haven't seen anything since. Just a simple thing like that can effect the diet. And it tells me the diet is working.

With this nice break comes more awareness. And I'm beginning to think that with more awareness comes more frustration on Christian's part.

I've contemplated what exactly "waking up" means. I've just started thinking this through so I don't have a long winded post to delve into quite yet (but it's coming). However, when Christian is going through his irritable periods of whining and crying, seemingly for no particular reason, and is only comforted by being held, I tend to think this may be part of his "waking up."

This leads me to the question - What if when he wakes up, he's pissed?

And these questions - What if all this "waking up" pisses him off even more because his brain and his body are in constant disagreement? And what if this royally pisses him off?

The way I see it now, and, again, I haven't really thought this through, but if you woke up and you weren't moving the way you'd like to and your brain wasn't communicating with your body, wouldn't you be irritable?

This probably all sounds very redundant and obvious but we all have these visions of Christian waking up to be a happy little boy. But with more alertness, what if he is alerted to the fact that he can't move the way he wants to? And it makes him mad the more alert he becomes? What then?

Anyone have an answer?

Hoping my aggravated little boy learns to move the way he wants to so he doesn't get so mad as he wakes up.

I suppose I can consider this our version of the terrible twos. But, instead, I'm renaming them the Totally Pissed Off Until My Mommy and Daddy Hold Me Two's.


Alicia said...

Hey there! Long time, eh? I've been reading just not commenting.

How interesting about Keto & illness. I'm glad Christian is the kind of kiddo whose seizures slow way down.

I definitely can see where you are questioning about Chrisitan's state of mind when he is "waking up". It makes sense. I'd for sure be pissed off too!

I'll try to show you some comment love more often, I hate that we have fallen out of touch.


ferfischer said...

So true about the "waking up and being pissed" - I think this is totally true. There are so many kids at Kidstreet with brain injuries from birth, and as they grow, they get SO PISSY. They need to be held all the time, and they're so frustrated and upset. I will say that over time, I've seen all of these kids adjust and get better - I think sensory/brushing stuff helps, but also just time and patience and positioning, cool toys that are positioned right and they are capable of playing with helps. But you have all that down, so I think you'll be just fine. :)

Robin Chlad said...

I firmly believe God knows Christians needs and desires and frustrations. But you are his voice for him. Pray, believe and ask God for Christian to be calm, aware and patient with his own recovery.

WhitneyBooze said...

Yep - I hear ya' on this one.
My experience with Suzy (and our paths have been very similiar so far) is:
As she 'woke up' and became aware of what she coudn't do it DID make her very frustrated!! And that is the reason that I break my back and my pocketbook trying to help her.
She KNOWS that she wants to do something, or move some part of her body, and she cant' figure out HOW to do it - and she gets sad (or mad) and I feel so bad for her.
That is the reason I keep going back to ABM therapy - just to help her learn to move the correct ways. (even though I haven't done abm since Oct. because I'm concentrating all my money and efforts onto Medek right now).

BUT - with the waking up and awareness comes more JOY for your child!!! yes, she gets frustrated; but she also gets HAPPY!! and SILLY.
And things started to give her joy. She loves tv now - and has a preference to different show, and voices her opinion, and even laughs at the oppropriate parts.
And she giggles at things her sisters do, and she laughs in the wind, and she adores certain people (and totally lets us know who she isn't fond of), and she has favorite foods, and certain aps on the iPad make her CRACK UP,
etc, etc, etc,
So - waking up is FAR better than staying in the fog.
And some of that frustration is GOOD - it gives her motivation to move, and see, and start to experience life (in the little ways that he/she can.)
Hugs and love.

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