3.24.2008

the battle of the B-6

On the advice of a friend/fellow epilepsy mommy, I asked Dr. Neuro if we could just give you an injection of B-6 before your next EEG in a coupla weeks.

Sure, no problem.

I was thrilled because I haven't had success finding a compounding pharmacy. Nor have I been able to hide the yucky flavor in food. And since you've just recently started eating solids again...I just worry that you'll start rejecting food again.

Last week when Dr. Neuro called to check on you I brought it up again...just to remind her because she's got a lot on her plate and can be absent-minded sometimes. It's a flaw. But, frankly, I'd rather have absent-minded than un-involved. She is VERY involved.

Anyway...

Turns out the pre-EEG B-6 is a no go. All this time I was thinking another thigh mark (the ghosts of ACTH are still dark spots on your chunky monkey legs). Never crossed my mind that it would have to administered via I.V.! Duh! Sheesh...sometimes I feel like I know way too much...and other times I feel SO stupid. That was a stupid moment!

But I have been having a mental rant-fest since that conversation...

Why the heck can't they just hook up an I.V. for an outpatient EEG?! They put in lines for MRIs...and many other out-patient procedures!

Why does everything have to be so wrapped in red tape!? So complicated?!

Besides, you've been hospitalized twice since your dx. Rigged to I.V.s because as the nurses put it...just in case. Neither time were we offered an injection of B-6 via the lines. Why? Because they forgot to give it a go!

But now it would be too much work to put in a line...give you an B-6 shot...and see if it helps.

Noooooooo...can't do that...

Because mushing up a pill and trying to camouflage the flavor with pears or pudding...

Well...

That's no work at all!

Grrrrrrrrrrrrrr....

I'm a cynic about the B-6 factor to boot. But my heart won't let me not try it. Just in case you're the 1 in a gazillion kid that it helps! When your kid has IS you stop playing the odds game...and just start hoping to win the game...

Maybe some other IS*ers* have suggestions?!

7 comments:

JSmith5780 said...

That STINKS!!

Can you put it in yogurt? I know that has a strong flavor... maybe it'll mask it. Other thought would be mix it with chocolate syrup. I know some have resported to that.

GOOD LUCK!

baby trevor's mommy said...

I've tried yogurt...he doesn't seem to like it.

Altho I need to try some other flavors...so far we've only tried banana & vanilla

I hate the thought of choco syrup! But I just might have to resort to that!

...danielle

Kelly said...

No, seriously, Danielle, we're not talking chocolate syrup ALL the time. Just for the B6. And here's another tip, put it in different stuff for as much as YOU can have it, and determine which substance masks it the best according to YOU. More than likely, he won't pick it out if you can't.

Also, I would make more of a stink about the IV. Do you know this about me yet? ;) Make then explain to you WHY this is incredibly impossible, and if their reasoning isn't sound enough for you, then pursue it a little stronger. Does your ped neuro take emails from parents? If so, go nuts. I use email like some use the phone. Less confrontational!

Keep us posted.

Dawson said...

We recently talked to a pharmacist about compounding the B-6. He didn't really want to do it becasue he said there was no way to make the bitterness. He did suggest mixing it with Coolwhip. Yep thats right Coolwhip. What did we have to loose. We tried yogurt ( nope ) applesauce ( nope) and the coolwhip has worked like a charm. Mind you he still hates the stuff but the coolwhip seems to mask it just enough to make it edible. Give it a try, it has worked great for us so far ( 3 days)

Jeff and Allison

baby trevor's mommy said...

LOL Kelly...I'm pretty pushy too. And to be fair...our neuro did give us the option of being admitted...but that is such a pain in the butt that we opted to just keep giving it orally.

And I'm totally trying the coolwhip idea! I, personally, LOVE coolwhip!

labonte4 said...

Danielle,

Bayview Pharmacy near URI compounds. A friend of mine's son is on Keppra & B-6. They made the b-6 into a rub. He actually holds out his hand for it. They also tried a lollipop. Mom says everything seems the same w/ the rub as opposed to the oral they were fighting to get down. I know that is quite a bit out of your way. If they can do it, I would be glad to pick it up 4 you & give it to my sis who works in NPT to save you the travel.

baby trevor's mommy said...

wow...I'll have to check that out. Who knew they could make a rub?! Do you know the name of the pharmacy?

...danielle