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Monday, January 9, 2012

Our Keto-Kid

On Saturday morning, Matt and I finally felt confident enough to choose the next steps in treatment for Ava. We won't know more about the abnormal masses in her brain until we get another look on MRI in a few months. So until then, what we can work to address is her epilepsy.

Here are a few facts, without getting too technical:

Most people with epilepsy (around 60%) will get control of their seizures with the introduction of one seizure medication.

Another 30% or so will improve with the addition of a 2nd medication.

The remaining 10% have what is considered "hard to control epilepsy." And no matter how many medications you throw at them, they're not likely to get seizure control. That's the group Ava's in. So the last glimmer of hope for these folks is a treatment that has re-surfaced in the the past few decades: the Ketogenic Diet.  It mirrors the Atkins diet (high fat, very low carb) and forces the body to metabolize fat instead of carbohydrates for energy.  This state is called "ketosis" and for centuries has proven beneficial for seizures.

On Saturday at 10am, Ava started receiving ketogenic formula under the supervision of her doctors.  Her diet is carefully monitored by a dietician and measured out on a gram scale by her totally conscientious mother. (YAY! finally a use for my gram scale besides measuring ground beef to the perfect pound!) We'll also need to restrict her from lotions, baby medications and diaper creams....which also contain carbs...did you know that??

So here's what we're waiting for:

*Her body will enter ketosis (as indicated by a urine test at every diaper...we're getting close)
*Her blood sugar will drop and then bounce back (not quite yet, though it's dipping)
*Her blood will get acidic and then level out (not quite yet)
*Over the next month, we hope to see a positive change in Ava's seizure activity...though this can take up to a year.
*1/3 of folks will see no change, at which point, if that's Ava, we would stop the diet.

But from where we stand, in the very best case scenario, once her body enters ketosis and her blood dynamics level out, we can go home...yep! HOME! But first she has to stop having hour-long seizures like she did yesterday and today. Both required serious rescue meds, so we can't leave the hospital until those cool off. We see a glimmer of hope about the end of the week, but it's just that...a glimmer.

First, we've got to get Ava into ketosis...go Ava go! and the prolonged seizures (heck - ALL the seizures) have to stop!

THANK YOU for your prayers. Despite Ava's continued seizures, Matt and I feel at peace with the direction her treatment is heading.


Courtney said...

Are there any kinds of lotions she will be able to use? I had no idea lotions and creams had carbs in there, so I'm really interested to know if there are alternatives!

Sara said...

Yes! There are carb free and low carb creams and lotions...and a few that we use (bordeaux's butt paste for example) are safe. But instead of giving her infant Tylenol, we'll crush adult tabs, mix them in water and give her the appropriate amount. Lots of fun!

Jen said...

praying for success!! we're lifting you up!!

i had to do this same diet to get rid of candida (went into ketosis). it worked! then, i slowly added only quinoa and brown rice back in.