Thursday, April 30, 2009

the banzel-ogues

Trevy's current med sched...


AM

150 mgs (3/4 tab) of Banzel - given at breakfast crushed and given in yogurt or oatmeal
100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup
1 Omega 3-6-9 - we're still expeirementing with the best method for force feeding. So far we've tried just squirting the oils into his mouth. He kinda hated that! Mixing it with yogurt. Worked for a day. Mixing with cream cheese. He LOVED that...but then I ran out & haven't made it to the market yet! And mixing with apple juice...and letting him straw suck it. This has been working well. He likes the straw factor.



PM

200 mgs (1 tab) of Banzel - given with dinner crushed and mixed with yogurt or chocolate pudding
25 mgs (sprinkle tab) of Topomax - given with dinner sprinkled in yogurt or chocolate pudding
100 mgs (1 tab) of B-6 - crushed and syringed with maple


How I'm feeling about...


Seizures...


Grrrrrrrrrrrrrrrrrrrrrr...


Trevor has at least 100 seizures a day. Spread between at least 5 clusters. Each cluster lasts between 5-10 minutes. And will have at least 5 spasms up to as many as 40 spasms per cluster.


Banzel...

I HATE IT! HATE IT! HATE IT!

I have seen no benefit yet. But on the contrary Trevor's seizures are SO nasty that he's being propelled backwards. And he's soooooo sleepy after each cluster. He used to be able to roll with the punches. Now...the clusters are stealing hours of our day. And I HATE IT!

The upside is...we haven't noticed any negetive (unless of course you factor in the stronger seizures) side effects.

Actually...Trevy has been quite happy. He's even been laughing (which frankly...kinda weirds me out) during the first half of his clusters. About four seizures in the laughter turns to crying. I told my mom yesterday that it seems like he's mad. That his little body won't stop. Like it's betraying him...and he's hacked off about it!

I've been hem-hawing about pulling the plug. I hate being in this place. Where it's hard to believe this drug will benefit us. But we're half way to full dose. And if we pull the plug now...will we always be haunted with "what if"....?????


Topomax...

So far no negetive side effects. But we're at a really low dose.

And it could be my imagination...but I'd swear his clusters milded up a bit after our last increase? Of course...we were then due to up Banzel...and they nasty-ed up. So who the heck knows?! I'm very tempted to up the Top...and skip the Banz increase this week. Maybe it'll help give a clearer picture...


Omega...

It's so hard to know. I've heard some new attempts at sounds...but not consistently. On the flip...there are other sounds that we used to hear all the time...but haven't in a while.

But I figure it can't hurt...so we'll be keeping it in the diet!


Life in General...

It's been a very heavy month or so. Lots of sadness lately. And not just in our family...seems like it's open season on the heart...

Oh...and of course the random run in with idiots...

had several stupid filter moments this week! One of my most hated lines is...

But he looks SO normal

I mean seriously people. Why?!?!

And why oh why do I put myself into that position?!?!?! Ugh!

I was very proud of myself though! I don't think my Italian vein throbbed once...instead I just smiled knowingly. Knowing that I was dealing with an IDIOT!

::wink::

I don't know...

I've said before that my emotions are like tides...they ebb & flow...

I've been in a sad tide for awhile...

because it IS sad. Watching your child. Flesh of your flesh. Suffer. And being helpless to rescue him.

That is truly. Gut wrenchingly. Life alteringly. Rip your heart out-ingly. Sad tide.

But I think the sad tide may be moving out. And a more peaceful tide flowing in...

Maybe...

All I know is today...in this moment...my heart doesn't feel shattered. And it's been awhile since...

8 comments:

JSmith5780 said...

Talk to neuro... explain your thoughts, aim to up the Top and decrease the Banzel. Maybe there is a balance in there you can achieve. Has the IS gotten worse with each increase? I would use that as leverage to get off.

HUGS

P.S. How is Babu these days?

Holli said...

I'm with you on the Banzel...So far with us...nada.

I think I get way down low during every single med trial. I've actually spent most of the day preparing a blog post that turned out to be too personal and depressing to post! But just getting it out made me feel a little better anyway.

I'm glad to hear the mood is looking up a bit for you now...send some of that peaceful tide here to TX!!

((HUGS))

Holli

Colby said...

Colby has had several bad days as well...Tuesday, Doc said we could start to decrease the Zonegran by 50 mg. (He was only on 200mg/day)...No increase in Banzel this week...Our doc won't change two drugs at once, as he says you won't know which is causing a problem or which is actually helping...Maybe ask about just upping the Topamax and leaving Banzel as is for a time? Then increase Banzel after you get Topamax at a good level? Just a thought...I can't bring myself to post tonight...I am feeling really down as well...Must be something in the air...Ugh!!! Take care...

blogzilly said...

Wow it must BE in the air, because I am feeling like crap too. Sorry...I can't org my thoughts on anything but I totally feel where you are coming from.

blogzilly said...

OK, I was able to org one thought...

"But he looks SO normal"

Yeah, I hate that too.

baby trevor's mommy said...

Jen...thanks for the support! Babu isn't doing so well these days. His doctor recommended Hospice...and no more chemo. That's been a heavy blow for us...we were really hoping for more time. But Jonathan is at peace. He feels like he was able to spend quality time with his dad when he went out there to visit.

Holli...you can always just send the post to me via email! Then we can cry together! *smile*

Cyndi...thanks for the advice! ((((hugs))))

Ken...I know ALL about not being able to org! I've had mushy brain for about two years now... And your amended comment made me laugh! But I can...cause I know! (((hugs to you guys))) It's a rough ride...especially the limbo stretches...

...danielle

Monica, James, Connor McGuire said...

count me in on the poopie mood wagon too! i have so many things i should post on our blog but honestly i just hate to bring everybody down with us. connor always seems to get worse with every med increase too...IS really sucks you know?!? I think i will hold off on the Banzel for now. I say this as I've just watched Connor fall 4 or 5 times. Clumsy enough without adding to it.

Oh and i too just want to punch people in the face with the "normal" comment. Although as he gets older we don't get it as much. hmmmm. maybe he's not so normal after all.

Babu will be in our thoughts. I peeked at their blog the other day. It just broke my heart. Unfortunately we went through alot of the same with James' dad. {{{HUGS}} We are all due a rainbow soon...

Margo said...

My heart sunk as I read your post. May this season of sadness pass by and a more hopeful, peaceful season come.
The pain of watching Trevor deal with those nasty seizure vampires must be so draining. I hope there's a miracle med combo to lesson them soon.
Hugs to you,
M