Tuesday, August 18, 2009

Why no update?

Because I have STILL yet to hear back from the epi. Believe it or not.

It's been more like a circus ring with clowns jumping through hoops than anything else.

Quite the disaster. There's no explaining it. No making sense of it. They are nuts. Plain and simple.

By Thursday's end, I was desperate for some sort of relief for Austin. Since no one else seemed to give a flip, I adjusted his Felbatol myself (after much debate and a heads up message to the epi clinic). We had just increased on Wednesday so I brought it back down to that dose of 1 ml. And, whatdaya know...he improved. I would never ever typically adjust his meds on my own. Buuut....since no one would return my frantic calls...and he had just been on that dose one day prior...I did it. And it's okay. Better even.

Sadly, I have still not received any further instructions. It would be so nice to be able to discuss this with our epi and feel like I'm getting genuine feedback. That has so not been the case. They are too busy for us. Too busy for Austin.

And that infuriates me to no end!!!

It's a shame. Really is. I've called over and over. My child was seizing like crazy. Now I'm stuck with a med that I suspect is worsening his seizures...and they won't CALL ME BACK!!!


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Update:

I finally received a call back from the epi clinic. According to the epi, the increase in seizures was most likely due to the decrease in zonisamide rather than the increase in Felbatol. After much discussion with the epi nurse, I agreed to restart the zonisamide (his last dose was Sunday night) and keep with the Felbatol increase until he reaches the treatable dose of 2 ml 3x daily. I'm hestitant, of course, because I am leary of the Felbatol. I have only seen negative effects since we started. However, we were adjusting the zonisamide at the same time. Time will tell I suppose. I have to try something. Maybe this will help determine which is responsible -if either. Like I've said many times before, Austin's seizures tend to go up and down regardless of med adjustments.

6 comments:

Marissa's Dad said...

When we get a new med, we have a conversation with the Doctor that starts with what's the initial dose, and ends with the comfort level of the doctor on how high we can increase at home without a back and forth from the office, which as you know is a hassle.

Admittedly, we've got a good doctor, and I've got a very strong science background, so that may help, and your mileage may vary...

baby trevor's mommy said...

I know it feels so scary to be making these judgment calls on your own. But you did the right thing. And honestly...you are the most qualified (within the perimeters defined by Marrisa's Dad)to moniter and administer. Because you're there in real time...and heart connection.

Maybe you should discuss this with your epi...and ask him if he's comfortable with you working within an established doseage?

Our neuro pretty much trusts me instinct and lets me move Trevy's meds as I feel best. It was very scary in the beginning. But it gets easier...

And btw...it doesn't mean that I'm not angry with you that your epi isn't available! If he can't be there to give you guidance each time...then he should have already established a protocol with you.

...danielle

Holli said...

Marissa's Dad and Danielle -Our epi actually gave us a written plan of how to slowly increase the Felbatol and decrease the zonisamide. When his seizures increased so much last week, I decreased the Felbatol back to his previous dose out of panic and lack of communication from the epi. If he wouldn't have improved, I would have most likely gotten back on track with our dosing plan. Since he did improve, I wasn't sure where to go from there. It was so confusing!!!

blogzilly said...

Clowns are creepy, don't you think?

I hate, HATE, the med game.

Sorry so short, but I'm beat. Long day on the road and in meetings saying the same things and hearing the same things from three different people at three different times in the same super sweltering room. I think some of me melted.

Colby said...

Holli...I am SO sorry this happened with your doc...I, too, would have done exactly like you did....

I DESPISE working with these meds...We started Banzel way back in March, and we STILL are not at the therapeutic dose...We go EXTREMELY slow because of past problesm...And we never decrease one while increasing another....I don't even know if it is doing much, anyway...Colby had ~ 15 drops today....I called and our GP changed his antibiotic for his ear inf. to a Zpack...Maybe that will do it...WHO KNOWS????!!!!

I feel like it is all a crapshoot anyway....

Let us know how he does....

Cyndi

JSmith5780 said...

how amazingly frustrating. I definitely learned to trust my own instincts and made small changes on my own.