Wednesday, April 15, 2009

stressin' me out - take II

Sooooooo...


All that Topomax drama was compounded because I had to run Trevy to the hospital for a follow-up ultrasound.


Many moons before IS...Trevy was diagnosed with grade IV kidney reflux. Which we were encouraged to (and did) surgically correct (when he was just six months old) pre-return to The Bush. Tanzania. Not knowing that just a month & a half later seizures would turn that idea on it's head.


We still have annual ultrasounds to make sure his kidneys are growing correctly. Yada yada. It used to be SUCH a big deal to me. Today I'm much more concerned with how his BRAIN is growing!


Anyway...


I was already frazzled...and just didn't have time or energy to deal with the added stress of working through all the prescription drama.


Buuuuuut...


Since I very publicly ranted. I feel inclined to publicly share the rest of the story.


Because after all the initial miscommunication...the pharmacist (without sarcasm intonations or devil's red coloring)...myself...and Dr. Neuro's nurse...all worked together to hash out the most ideal solution.


Which ended up being...


14 pills of the 15 mg sprinkle capsules to use during the titer-ing up phase. Dr. Neuro had written a schedule using 12.5 mgs. Which I ended up agreeing would be difficult to split from a 25 mg sprinkle cap. But I was willing to give it a go if need be. I'm breathing a sigh of relief that it doesn't.


The remaining script will be filled with the 25 mg sprinkle capsules.


Trevor's max dose will be 75 mgs AM & PM. For now.


All the anticipated red tape involved with insurance coverage was surprisingly easy to navigate too!


Sooooo...


at the end of the day. First of the morning stress withheld. It ended up being okay.



I'm debating starting the Topomax tonight. Today is up-the-Banzel day. And Trevor has been so wobbly with each increase. Makes me a bit nervous to introduce a new drug on the same day.


I may wait until the weekend.


Then again Trevy's seizures are SO SO SO bad. Falling down backwards bad. It's just wrong that his seizures are more violent with meds! But...it could be my imagination...I think we may be seeing less clusters? I don't know...


I'm just happy Jonathan is home to help...


...playing single mommy was NOT fun!

7 comments:

JSmith5780 said...

Did you get Topamax and not topiramate?

baby trevor's mommy said...

It'll be ready after 12...but I've been assured it'll be brand...

The nurse told me the sprinkle capsules do not have generics yet...

...danielle

blogzilly said...

I hear you about introducing new drugs while the current ones already make your boy wobbly. Bennett was a zombie last night, and it was just sucky to have no real interaction with him.

Now today I see he has a cold, so he might be extra tired because of that, but you just never know day to day and that's the rub we all face.

Holli said...

Glad you got it straight! That's the LAST thing we need to deal with considering our already-through-the-roof-stressers!
Can you believe it...our epi just put us on a trial of Banzel too?? Totally left field...before we got there, he told us we would be discussing the keto diet!

therextras said...

I'm late coming in on this post - oh! - and I forgot sending cyber-hugs back to your family, Baby Trevor's Mommy!

I think a lot about how it would be to turn-back the medical system to something simpler, as it is in Tanzania. Alas.

Did I ever tell you about Fawnahareo's blog? She is doing the ketogenic diet with her 3-year-old, successfully so far, but with lots of professional support (in Canada).

I am glad the current issue was resolved. Barbara

baby trevor's mommy said...

I'd love to read her blog?? You can leave the link here...or email me tanzie213@yahoo.com

Our local neuro feels that the Keto diet may be our best next step. I've mixed feelings...

...danielle

Holli said...

I canNOT believe she still hasn't sent the PET to Chugani!! What's she waiting for??

Anyway, to answer your question, the pill pulverizer worked really well. One twist and voila! ..powder! I put it in applesauce which I've heard diguises the bitter taste (same as chocolate)...I still haven't given Austin chocolate yet...but I'm about to try...applesauce is getting old. I'm sure he'll be quite a chocolate lover like his Mommy!! ;)