Wednesday, August 19, 2009

tornadoes and seizures?

Did any of you happen to watch The Weather Channel yesterday? Man...our neighbors in Beaumont had a little excitement. An F2 ( I think, might have been a strong F1) tornado blew through some of the largest retailers in town (right before the big TX tax free weekend for school shopping)...the mall, Wal Mart, and Kohls. I tell ya, if it's not a hurricane it's something else. They were determined to make the news again this summer! No one was seriously hurt though, thank goodness. Even the woman that was in her car when an SUV landed upside down on top it. Not injured, just a little in shock.

Completely unaware, and smack dab in the middle of fixing Austin's lunch, I got a call from my mom who'd heard that there was a funnel cloud just a few miles from MY house!! There's no type of weather I fear more than tornadoes. And our house...not exactly tornado ready. I ended up piling a mattress, pillows, Austin's helmet and my cell phone in the know..just in case! Can't you just see us all (me, Austin, and the Bailey) all camped out in the bathtub?!!

That certainly didn't come at the best time, although it's not like it was planned. Seizures were the priority of my day. Back up again. Way up from the weekend.

Without getting into too much detail, I concluded from the phone conversation with the epi nurse, that they think I'm a total nutcase. She said there was noooo way that the Felbatol could be causing the increase in seizures. According to them, it was too soon to see this type of effect. I asked her if it was a coincidence that they got dramatically worse the day after the increase...and if it was a coincidence that they got dramatically better the day after the decrease.

Oh, well, what would I know? I'm just his mother. The only person who sees him all day everyday. I guess she would know more since she sits here and counts seizures with me and knows everything about him and seizure meds for that matter. Her having her MD and all.

Not really. But, seriously, I still don't understand why I was under attack for adjusting his meds. I told them in a message something needed to be done. They didn't bother to call me. For four days. A five minute phone call was all it would have took. She pointed the finger at me for disrupting the increase schedule.

I could be wrong, but it seems like I might have mentioned wanting to avoid this type of confusion. It's exactly what I feared would happen if we went adjusting more than one med at a time. Guess my mommy's instinct should be obeyed from now on.

Anyway, thanks everyone for the support. I never feel comfortable adjusting his meds on my own, and to know that I'm not the only one who would have done that restores my confidence a bit.


blogzilly said...

I'd have done it and I HAVE done it. And I'll probably do it again at some point. You are with your kid 24/7, for the most part at hospitals a guy has to read a chart before interacting with your child.

I ain't saying they can't put a plan together, but you can make adjustments on this shit just as easily as they can.

Jamie said...

I am so with you! I took madie off her Clonopin and she was sitting a month later. Yeah Im with Ken on this one.

Liz said...

I totally agree with you and Ken on this one. I've done it and will do it again. And boo on that nurse....ugh, sometimes I think they ought to have to spend one night as the parent of a seizure kid before they can begin to get snippy about whose job is what. Your job is to protect your child, even if that means adjusting meds when they don't have the courtesy to return a phone call.

JSmith5780 said...

I too have adjusted meds. WE ARE THE PARENTS! We know what is happening. As long as you are still in a range specified by the doctor, then no harm no foul. And yes, even the smallest amout of a drug can have an effect.

Case in point, Austin is trialing ADD meds. He was on the absolute smallest dose and he was still hypermetabolizing it. What was supposed to last 8 hours was lasting about 4-5 hrs. Always trust yourself!

Are there any other hospitals near you?

I can't imagine tornadoes or hurricanes. As much as I hate them, I'll stick with my snowstorms!

baby trevor's mommy said...

OMG-osh...I'm fuming!

Not at you of course.


Colby said...

We know our kids....They are ALL SO DIFFERENT and REACT SO DIFFERENTLY!!! You cannot generalize!!!

I, too, admit to having "done it"...But it has actually been with our neuro's blessing....He has actually given me some leeway (sp?)...So even though it makes me somewhat uncomfortable, the fact that he KNOWS it might be done makes me feel better about it....

YOur bathroom story made me laugh...We have lots of tornado warnings as well here in SC...You can imagine me, Colby, pillows, seizure meds and my cell in this TINY little hall bath...I have this fear of his meds being blown away and all of the drug stores being destroyed and not having any meds! I know where you're coming from!!!


Jill said...

You should listen to your motherly instincts and you are very educated on this, I think you may know what your doing sis