well that was a nightmare!

Tried to get the first dose of Liqui-Dualcitra into Trevy.

Screaming. Crying. Tearing at clothing...hair...anything tear-at-able. And dry-heaving were all involved.

The thing is...

The Topiramate is causing Trevy's CO2 levles to drop.

Now I don't know much about much...but I do know that if his CO2 levels continue to decline it will lead to metabolic acidosis. And that, my friends, is whole nother kind of nightmare. The liquid yuck's job is to reverse that side effect.


This really sucks. Cause even though we're still seeing mad seizures. We're also celebrating happy stuff. Babbling. And clapping. And laughing. Happy stuff. Which is definately connected to the introduction of Topomax. And if we can't resolve this CO2 jazz...we'll have to pull the Topomax plug.

And I just hate that.


blogzilly said...

How bad does it taste?

baby trevor's mommy said...

I tasted it...and it's pretty sour. Jonathan says it tastes like flouride. Ick! But I think the major issue is HOW MUCH he has to take...

10mls three times a day!

I mixed it with a lot of juice this morning...and he seems to be handling that better. Half a sippy cup left.

All we can do is try.


JSmith5780 said...

What meds is he on right now? I didn't think his Top dose was that high. Maybe the combo of the meds is making things worse?

Do you read Regan's blog? She was taking the bicitra. Maybe her mom can give you suggestions for how she mixed it.

good luck!

baby trevor's mommy said...

We're weaning the Banz...but slowly. He's at 1 tab am & pm. We'll go down again tonight.

And with Top he's at 75 am & pm.

It's not a super high dose...but I don't want to go up any higher unless we can resolve this CO2 issue. Ya know...

I asked the pharm about flavorRX...but because there is no written data about interactions they won't use it.

I'll just give the juice a go...and hope that we can get it all in him.


JSmith5780 said...

Hey D. I called my cousin. She's a pharmacist tech at CVS. She's my go to person on all things med related. She looked in the FlavorRX book and it states is CAN be added to citric acid-sodium citrate (generic name of Cytra). She listed off like 10 flavors that can be added. SO I would go back to the Pharmacy and ask them to show you the FlavorRX book.

Dawson said...

Isn't it just aweful what we put our kids through!!!!

Way to fight Trevor

If it taste bad im not eating it either

( ok im kidding)

Hope that process starts to go more smoothly and even more, hope that it works

baby trevor's mommy said...

Jen...I'll give them a call on that. I think part of the problem is...they don't deal with this stuff on a regular basis. So stuff falls through the understanding cracks. Tell your cuz thanks!

Jeff...dude...you are SO totally not allowed to encourage naughty non-eating behaviours! *wink*


Holli said...

The only thing worse than a new med not working...

Is that new med helping...

Only to have to pull it because of side effects.

And having to wrestle your baby down while he's fighting you.

I'm hoping you'll find a Trevy-happy way to get it in him so you can continue on with it!

Sophie's Story by Elaine said...

Sophie was on Cytra-K crystals when she was on the ketogenic diet. So she took it for about 6 months. She never had a problem taking it. When I talked to you the other day, I was thinking of the NanoVM she was also on at the time that was a powder. We dissolved the Cytra-K in water since she was restricted in what she could eat or drink while on the diet.

Hollis T said...

Hollis loved that stuff! Really! She's into the sour thing, like pickles, etc., so that's not a big surprise, but it was like a little treat for her to take it when she was on it! WEIRD CHILD. Topomax has always been the most effective drug for her, but it is evil. She lost 25% of her body weight before her surgery, and a good portion of her hair from malnutrition, as a result of the side effects of Topomax. I wish we could take her off it, but it really is the only med that has conclusively reduced her seizures.