Tuesday, October 14, 2008

New motivation...

I have to admit, I've been avoiding posting for the past few days...mostly because I've been waiting for good news to share instead of this depressing junk that has consumed us lately. While I don't have the best to share, it's getting a little better.

I've noticed a very slight decrease in seizures/spasms. He seems to be adjusting a little more to the increased Zonegran dose too (we're up to 300mg/day now). At first, I was beside myself because I couldn't see what good it could do since all he wanted to do was sleep. He would get up, take meds, practice standing for a while, and was ready to collapse. This cycle would continue throughout the day. He's still sleeping more than normal, but his alertness is improving slowly.

Another reason I've been sort of MIA lately is because of this new book I've been reading. I've just been glued to this thing. Although it doesn't tackle Infantile Spasms so much, it does have tons of info that I've been trying to understand for months. It actually makes sense. I was telling a fellow IS parent about it earlier in an email. It points out so much that I need to check into. I'm learning more from this than all the research I've done over the past five months combined. I'm looking into every possible avenue for an underlying cause...whether that means finding it or ruling it out. Remember, we want to rule them ALL out. We DON'T want to find a devastating metabolic disease, brain abnormality, etc. BUT, it is so crucial that we know one way or another. I'm also realizing that every little detail matters. The right arm (not sure if I got into that on here -I will soon), the direction he rolls his eyes during a seizure...

These doctors MAY spend thirty minutes observing/evaluating these kiddos every few months. In that time they may or may not have a seizure. I'm with Austin 24/7, so I KNOW when something is off, or when something new is occurring. That's all I do, all day, everyday...is watch. Watching for a sign of either something new, or something that could point to something else. When you don't have ANY answers about ANYTHING, all you can do is LOOK LOOK LOOK. I'm looking for anything and everything that the docs may not have the opportunity to see for themselves...that could be relevant and crucial. Just as I told Danielle, my old preconceived notion that these doctors know it all, is gone...out the window. Duh, I know they know more than me...BUT, they DO NOT know my baby more than me! I know every move he makes, they certainly don't!

This book has inspired me to take control of the situation. To explore options, research, observe...I did not realize how important that could be. There is SO much more to this disorder than I thought...thanks to our horrible previous neurologist that didn't have a clue!

I will definitely try to update more often. I've just been so consumed with all this new info...still trying to figure out where to start!

I still have so much to say, but running short on time...Austin's up from his nap and we're going to get ready to head to NANA's!!! I'll be checking back soon...

3 comments:

JSmith5780 said...

It's such a powerful feeling when you take control of the situation. You are right, the doctors know what the doctors know, but WE know our babies, far better than they ever will.

Congrats on taking this step and taking control. The neuros are there to guide you, but they can't guide, what they don't see!

baby trevor's mommy said...

ditto on Jen's thoughts.

I'm the same way with wanting to know. It's hard enough living with seizures...but then to not know why...it's horrid. Even though getting sad news is hard on the heart...for me...it's better than the not knowing. I'd just rather know.

And you're right. Even the most involved neuro isn't the same as our insight on our kids. I'll never forget when I showed the clip of Trevor's spasms to the neuro...I was mortified that he could see THE SAME thing I did. And think it was innocent! Thank God I'm pushy...and got an EEG! lol

Anyway...you sound jazzed up! Austin's a lucky little guy!

...danielle

Jamie said...

THAT is alot of ZOnegran! Let the doc know he is sleeping all day..they may lower it slightly...my madie is on 200mgs! she is almost 23 pounds...
Oh big guy...Im thinking of you. I agree MAMA KNOWS BEST!!
Sometimes I almost think I could deal with a funny foot or a weird eye or crooked fingers THAN THIS!
YOu are SO in my thoughts...I just know what you are going thru...man oh man... I agree he is a lucky guy :)