Sunday, August 24, 2008

Looks like Keppra

Just like the first time we increased Austin's Zonegran, it was about 4 great days, with more spasms to follow soon after. It's so aggravating that there's not a particular drug or dosage on a drug to "do the trick" with these stupid spasms. That's the hard idea what causes IS or how to treat it! Even if we find the right one, it may take weeks for us to find that right dosage. So, bottom line, the spasms are back, and I will have to call the neurologist tomorrow to discuss whether we increase again or try adding on Keppra. From what I've read, it should only have mild side effects -like the Zonegran. I did just find out, however, that Zonegran can cause difficulties with concentration AND speech. I'm crossing my fingers that is why Austin won't pick his consonant-sound-babbling back up. It sounded like he was starting to, but he suddenly quit again. It seems like that was around the same time that we started the Zonegran. I'm just hoping it stems from his medication rather than an unrelated development delay from his IS.

On a totally positive note...Austin is still standing like a pro! He just goes up...down...up...down...the whole time he is awake! It certainly keeps me busy, but I'm loving every minute of it!

I think he may also be losing a little of his ACTH weight! As most of you know, he's always been a pretty big boy to begin with, but that stuff was unbelievable! They said weight gain was a side effect, they weren't kidding! He gained 8 lbs in just over 2 mos. Any of you that have had kids know that's quite a bit in that amount of time! His little (did I really just say *little*!) cheeks are starting to lose some of that fluid (that's another side effect -fluid retention) and that sweet Austin face is coming back! It's strange because I couldn't tell when they started getting puffy until I would look back at pictures. I thought, 'this isn't what I'm seeing!'. He just looked like my same 'lil sweet baby, Austin! I guess because I see him all day, every day. His 'roid rage is also just about gone! He was having these strange outbursts where he'd act like the Incredible Hulk for a moment...He'd cross his eyes, tense up, and act like he was about to tear into someone! He's getting sweet again!

Hopefully, I will be updating tomorrow sometime with new info. I'm anxious about what the neuro's going to say...

1 comment:

Stacey said...

Hi Holli. My name is Stacey. I am one of the many cousins of Chad. (lol - if he gets confused, I am Billy's daughter.)

I just wanted you to know that we are so proud of you and Chad and how strong you have been. We pray for Baby Austin and you two every day. God can do amazing things and I believe He is watching over your baby boy.

Please keep in touch! Amanda finally gave my mom this blog site, so I will be following progress. I know that we don't really know each other... but know that, no matter what, you're family and that means we love you!! ;-)

How old is Austin now? Maybe sometime in the not so far future we can bring our son, Levi, to meet all of his family. I'm sure he'd love to play with Austin!

Well, I am off for now. I am glad to meet you.

*Sending Hugs and Love Your Way*

~Stacey Simison (Marshall)
You can also email me at :) You should also be able to click through to my blog and "meet" the family!