Mystery Lane

Mystery Lane

Saturday, January 22, 2011

And They’re Back

The seizures have returned.  I think Jackson had about a 27 day break.  Both Kevin and I noticed these quick little jerks this week.  It was hard to tell at first if he was having a seizure or if he was just moving quick.  But the last couple of days they have become definitely noticeable as seizures. Although, these quick little jerks are still a huge step down from what his seizures had become.  When I told my sister last night she said “Oh I’m sorry Stace.”  The weird thing is that I am really ok with it.  Don’t get me wrong, I loved, loved, loved that he wasn’t having them and I wish he would never have them again.  In fact, I’d be willing to give one or all of my limbs if Jackson could be seizure and brain malformation free.  It’s just that now things feel “normal” again and I am not waiting on edge anymore.  I really had this fear that because of the long break, his brain was building up a grand mal seizure and I was, and am, petrified of that.  So for now we are seeing these quick little jerks that most people would probably not even recognize as a seizure.  I just hope they stay minuscule like they are now.
Oddly enough, earlier this week the happiest little boy in the world that had been living with us started getting a little grouchy again.  I secretly wondered if the seizures were back.  Then a couple of days later Kevin confessed that he had seen a couple of jerks but just didn’t want to tell me.  I told him I had seen a couple of jerks too but just wasn’t sure.  Funny how we were trying to protect each other. 
I belong to an online email group of parents with kids with PMG (polymicrogyria – part of Jackson’s condition).  This week a lot of people were talking about B6 and Fish Oil.  B6 is what we have been giving Jackson and seemed to have some effect on his seizures.  Some of the other parents who give their children B6 said they gave it to help improve behavior.  Some of these seizure drugs can really alter behavior and personality.  Apparently the B6 helps the kids with their behavior.  So then I began to wonder if maybe that was why Jackson had become so happy.  Was the B6 helping his behavior and making him happier?  Who knows?  Yet another reason why my blog is called Life on Mystery Lane!  This week I plan to contact Jackson’s pediatrician and neurologist to find out if he can take Fish Oil.  Fish Oil is good for cognitive development, and Jackson needs all the help he can get in that area.  Plus one mother in the group mentioned you can buy it in liquid, flavored form.  I looked it up and sure enough there are lemon, strawberry, and orange flavors.  You can put it in juice and Jackson wouldn’t even know.  I really like that idea as the kid now takes 10 pills a day plus his Flinstone vitamin.  He’s really a trooper about it but one more pill might send him, and me, over the edge!
One bright spot this week is that I have really noticed Jackson moving and using his left arm and hand more.  He typically has his left hand in a fist and his left arm hugged up to his chest.  But this week he has really loosened up and his hand is open more and his arm is out and about.  This morning he was laying on the floor with his left arm up alongside his head.  He never has his arm up like that!  He still has days where that arm and hand are tight, but I am seeing more and more days of them being loose.  That is a really good thing.  It means his brain is sending a message to his arm and hand.  Historically, his brain hasn’t liked communicating with his arm and hand.  Maybe they’ve decided to accept one another and work together. 
Progress is slow with Jackson, but extremely memorable.  It’s one of the perks of being a special needs parent.  I mean really, how many of you parents of a neurotypical kid can remember when they first put their left arm up alongside their head?  Betcha can’t.  But I will!

1 comment:

  1. Stacey, I too have a son with pmg and I've started giving him B6 after reading your post on the yahoo group. I hope it works even a little!! I love your blog and will keep reading it! Catherine Jacobson