Saturday, February 03, 2007

You'll never guess...

what happened today!
What's that you say? You think KayTar had an episode? My word! You're correct! How did you guess?
Oh, I guess you have a point, she HAS had 4 episodes in less than a 2 week period, so it does make it the odds-on favorite for the answer to "Guess what happened today."

Seriously guys, I attempt to handle this with a "That's just the way life is." kind of attitude, but 4 in less than 2 weeks? Its wearing me thin. Just a bit. A.TEENY.TINY.BIT. It just seems a little unreal. Although they have always been awful, at least they were predictable to some degree and kindly they are just happening a little too often and sporadically for me.

I understand we are dealing with an in-flux of variables and therefore we don't know if this is a true natural increase in the episode frequency or an increase due to the influence of one of the many variables.
Variables such as:
*Weaning her from Periactin
*Being very ill and hospitalized for dehydration
*Weaning her on to Topamax
*Her being totally med free for the entire week she refused to eat
*Not being up to the full dosage of Topamax for her weight level

I understand that it could be one of many things that are easily explained...or it could be something unknown. I suppose that besides the fact that these events are very unpleasant (a quick sidenote, the pediatrician always refers to them as events, which then makes me bunny trail a little and imagine us hiring a party planner for these "events" and decorating the house and having guests over, ect...and it is REALLY nothing like that...unless at the "event" the entertainment was a small person who got entirely sloshed and proceeded to entertain by screaming and barfing all over the place and then passing out after 8 hours or so of it, it might kind of be like that), I worry that these increases are not due to an outside force, but of their own accord. I worry that while we have a tentative diagnosis, it is truly unconfirmed. The fact that she is still vomiting at night makes me wonder if there is something going on in her brain, maybe causing the vomiting and also increasing the episode incidence. I know it is just a worry born out of the unknown and the unfamiliar. I know there aren't supporting facts and it is just an emotional response to what is happening.

For a while I felt like we were adjusting to the episodes. I knew what to expect, when to expect them, and how to just all seems for uncertain at the moment. It seems like she could wake up and still be having it in the morning, because we've lost the familiar pattern of it all. Whose to say she will be out of it in the morning? I believe she will be based on the episodes behavior in the past, but if that starts to change too much, I no longer have that to rely on for comfort. It is a bit disconcerting.

KayTar has turned me into an organized, predictable sort of person. I like order. I like the calendar. I like planning things. I like to know that if I write EPISODE down in my desk calendar, for roughly 14 days afterwards, I will not have to write that word again. I do not like writing the word EPISODE in my desk calendar and then writing it again two days later, then again the day after that, and again nine days later. I don't like the fact that when I go to bed tonight, there are no guarantees that I won't be writing that same word in my desk calendar tomorrow. I don't like not knowing that we will have a chance to catch our breath before another waves hits us. I just don't.


Anonymous said...

I don't like it for you either, Kyla.

Hopefully it's just the meds issue.

Ben and Bennie said...

Man, I didn't have to travel far (over to my blog roll) to find someone sharing our own situation. Ben's recent "episode" threw us for a loop because we too could almost predict when they would occur.

Now we're shaking our heads trying to figure out what happened? Medicine, over-tired, a bug?

I would seriously look into the meds first. The last time Ben went into having almost constant seizures we found it was a reaction to Singulair. Accompanying the "episode" was vomiting and followed shortly thereafter, dehydration.

Kyla, you guys will be in our thoughts.

WarriorMom said...

I wish I could offer advice, but I really haven't a clue. Does it help if I say I think you're doing a great job, in spite of everything?

Beck said...

Awful. I'm so sorry.

ewe are here said...

Truly awful. I hope you find the 'cause' of the extra episodes real soon.

Andrea said...

Oh, I am so sorry. That is horrible.