I got a BIG, slobbery smooch last night from my baby boy! It's the very first one I've gotten in probably five months! He gave Chad about 4 or 5 the other day, but when it got to Mommy's turn, Austin started being a cranky little crab, leaving me sugar-less. It didn't bother me so much because just seeing him give kisses to anyone again brought tears to my eyes. It reminded me of when he first started doling out smooches months ago...he'd stand up in my lap, grab me up by my cheeks (which could be painful little pinches -but totally worth it), and plant a big wet one on me! He stopped doing that for so long...I missed it more than you can imagine.
I'm impatiently waiting right now for someone to call me back from the epilepsy clinic...I'm starting to piece some bits together that could potentially be extremely significant. I know I've talked about Austin and his preference for his left arm. It's becoming even more obvious that there's definitely something to this. I've wondered since I first noticed it a month and a half or so ago, if maybe there's a focus that can be identified. For those of you with limited knowledge of seizures (that's me too -but I'm learning a little more), there's two classifications: partial and generalized. Within those classifications there are different types (too many to list). Austin's seizures are considered generalized myoclonics. Generalized meaning the whole brain is affected, and myoclonic being the type of seizure ("muscle jerk"). It is hard to determine the focus (where in the brain the seizure originates) in generalized seizures, probably because it spreads so rapidly throughout the brain -as opposed to partial seizures that involve only certain parts of the brain. I'm certainly not going to go through all of the details because it is very complicated...I just needed to explain the basics so everything else will make sense. Generalized seizures are more difficult to control, particularly myoclonics. If an affected area in the brain cannot be found, then the treatments are limited -namely surgery. With Austin, I'm starting to wonder if maybe there's something to be found in the left side of his brain (left side of the brain controls movements on the right side of the body). I also just read that speech is typically located on the left side of the brain as well. He had a looong cluster day before yesterday...only his right arm and right foot would move. He's always, always, always "checking" his right hand. He brings it up in front of his face and holds it with his left as if he's getting a some sort of sensation. Not only that, he tends to prefer using his left arm/hand for everything. Sometimes he keeps his right arm plastered at his side as if can't use it at all (I know that's not the case because he does use on occasion). All of that combined with the fact that we first started noticing him grabbing his right hand around the time we first noticed the spasms. I did not connect the two until very recently. We thought it was cute, him grabbing his hand...it looked like he was checking his pulse! I remember him doing that in the hospital and he had just started doing it. Only when I started thinking something was strange about it, did I realize how long it had been going on. Quite a coincidence...Anyway, I didn't mean to get into so much detail. I'm just soooo curious as to what this may mean. It could give us the insight we need to explore certain areas. It could be Him giving us a direction. Or...I could be misinterpreting and it could mean something devastating. I certainly don't know enough about the anatomy of the brain, or epilepsy for that matter, to draw my own conclusion. Call me back people! I just want to know what this doctor may suspect...some possibilities anyway.
Well, there's my ramble for the day. I keep checking Madie's blog to see how the new meds are working...I'm starting to get concerned...no post in nearly a week. Oh, I hope it's helping...Post Jamie!
I'm impatiently waiting right now for someone to call me back from the epilepsy clinic...I'm starting to piece some bits together that could potentially be extremely significant. I know I've talked about Austin and his preference for his left arm. It's becoming even more obvious that there's definitely something to this. I've wondered since I first noticed it a month and a half or so ago, if maybe there's a focus that can be identified. For those of you with limited knowledge of seizures (that's me too -but I'm learning a little more), there's two classifications: partial and generalized. Within those classifications there are different types (too many to list). Austin's seizures are considered generalized myoclonics. Generalized meaning the whole brain is affected, and myoclonic being the type of seizure ("muscle jerk"). It is hard to determine the focus (where in the brain the seizure originates) in generalized seizures, probably because it spreads so rapidly throughout the brain -as opposed to partial seizures that involve only certain parts of the brain. I'm certainly not going to go through all of the details because it is very complicated...I just needed to explain the basics so everything else will make sense. Generalized seizures are more difficult to control, particularly myoclonics. If an affected area in the brain cannot be found, then the treatments are limited -namely surgery. With Austin, I'm starting to wonder if maybe there's something to be found in the left side of his brain (left side of the brain controls movements on the right side of the body). I also just read that speech is typically located on the left side of the brain as well. He had a looong cluster day before yesterday...only his right arm and right foot would move. He's always, always, always "checking" his right hand. He brings it up in front of his face and holds it with his left as if he's getting a some sort of sensation. Not only that, he tends to prefer using his left arm/hand for everything. Sometimes he keeps his right arm plastered at his side as if can't use it at all (I know that's not the case because he does use on occasion). All of that combined with the fact that we first started noticing him grabbing his right hand around the time we first noticed the spasms. I did not connect the two until very recently. We thought it was cute, him grabbing his hand...it looked like he was checking his pulse! I remember him doing that in the hospital and he had just started doing it. Only when I started thinking something was strange about it, did I realize how long it had been going on. Quite a coincidence...Anyway, I didn't mean to get into so much detail. I'm just soooo curious as to what this may mean. It could give us the insight we need to explore certain areas. It could be Him giving us a direction. Or...I could be misinterpreting and it could mean something devastating. I certainly don't know enough about the anatomy of the brain, or epilepsy for that matter, to draw my own conclusion. Call me back people! I just want to know what this doctor may suspect...some possibilities anyway.
Well, there's my ramble for the day. I keep checking Madie's blog to see how the new meds are working...I'm starting to get concerned...no post in nearly a week. Oh, I hope it's helping...Post Jamie!
2 comments:
We have begun the new med as of "friday night" cannot say...I am on the edge of my seat.watching her always! She has been a bundle of noises today..and her sleep is all screwy from this gosh darn time change! gah! Saw only ONE seizure yesterday as reported by Grandma.... The day is not over yet today...She said she slept for 2 hours after! they are strong when she does seize I tell ya....
she has been a picky eater as well today..and I am just NOT getting that I NEED her to pack some pounds on! If onlY I could go that long without food!!
Doc says if Depakote works we can begin to wein her off her Clonopin and her Zonegran..with all those at once it can risk Liver damage! and Kidney damage! Eeeek!! Wants new drug in system before any serious weining begins...GAH!
Oh lil Austin...I tell ya those spasms wiped madie out! she slept so much! She never had clusters but usually a ton of singles... they were so hard for us to catch...we always just brushed them off as some weird baby moves...little did we know..
That is very weird about one side of his body..I cant explain that one...you are maybe right with the one side of his brain theory...Hmmmm....
Being summoned by a small bird right now...Ill be in touch...
HANG IN THERE!!! :) :)
Trevy's stingy with the kisses too! But it sweet to see!
...danielle
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