Monday, June 20, 2011

The Destiny Diet Launches

And so! The torture begin! If you're disappointed by my lack of optimism and perkiness, you've never been in my Crocs.

Last night Desty was admitted to Children's Hospital in Aurora, Colorado. Wait! This calls for a very brief backtrack.
My girl has uncontrolled seizures, some other associated difficulties, a genetic mutation, crazy EEG readings, seizure history - put it all together and she has what's recently been referred to as a Dravet Spectrum Syndrome. Why this damn mutation can't give Superhuman Powers - I don't know! With a name like Destiny, she should be competing with SuperWoman or likened to the Greek Goddess Clotho and not fighting for a happy, healthy childhood!

I was pretty okay until we were introduced to Mr. Dysautonomia just a few weeks ago...for a later post!

Here we sit in Room 630, starving Destiny for a Cause. She has failed on so many anti-convulsant drugs that there's only a 5% chance of any new FDA approved medication being effective in controlling her seizures.

(Now, there's a drug that's been approved for ten years in England - the only drug in the world with an indication exclusively for Dravet - but it would come at a deep out-of-pocket expense...for a later post!)

Our aim is to put this child into a state of ketosis so that her body will start burning fat for energy instead of carbs. They don't know why it reduces or eliminates many kid's seizures, but I doubt I'd understand it anyway. Watch these videos About the Ketogenic Diet and Another Great Keto Video.

So here we sit (still! ;-)) in Room 630 purposely making my daughter ill, lethargic, nauseated, waiting for her blood to become acidic, checking her pee every three hours. It is 4:00 in the afternoon and, albeit, in high spirits as my happy little girl usually is, every hour she says in whiney confusion, "When is my breakfast gonna be here, Mama?". She still thinks we're waiting for breakfast, even though we remind her every hour that she'll get four 3oz Vanilla calorie shakes today, a bit more tomorrow and a real breakfast the day after tomorrow.

The funny thing is that today I bet Desty is the healthiest kid in this hospital - seizure-free thus far and she's still burning carbs! ;-).

My son, on the other hand, has had a fever for a third day now, is pukey and generally miserable except that his "hospital" is a kid wonderland and he has a mom and her three adoring teen daughters and their dog nursing him back to health!

Trying to get one kid to STOP puking and feel good, while MAKING the other sick...Great Times, I tell 'ya!

So many wonderful people in our lives!!!

This is the first post I've ever tried to publish from my IPad - YAY! I plan to post lots, minus cool pics and videos, this week to keep folks updated.

- Posted using BlogPress from my iPad


Robin said...

Can only say - we love you all - doesn't seem like enough - wish we could wave our magic wands and make it all better. Love you - Robin and Bruce

Susan Blumberg said...

sending healing thoughts for all of you - hoping for all the best for Destiny! take care, Susan

T. and the MT Pug Pack said...

I can't say it any better then Robin did. Just wish we were closer so I could be some real help and support. Love to you all! Here's to a happy, healthy summer ahead!

Destiny Ann said...

T, your support is real. I totally depend on your words in so many ways.

Renee said...

Hoping this is the beginning of the magic wand!--Renee

Anonymous said...

Tamra and I will see you soon! I send you warm hugs and beautiful prayers! Tammy feel free to email, or text me any time of the day or night. I will be there for you, Benny and Destiny (and can't forget about Tank!) whenever you need it for whatever reason!
Love, Geneva

Anonymous said...

My thoughts are with all of you. I love Destiny so much, she is so sweet. I hope Benny gets better soon. I am sure this is all very upsetting. Best of luck and I hope things start looking up.

Hannah G.

Destiny Ann said...

Thank you, G :-). I don't think Benny can come to the hospital at this rate. will you still make it? If so, would you mind sitting with my baby while I go eat downstairs? She can't see us I thought I was going into ketosis!

Hannah - Thank you!

Anonymous said...

Destiny is a beautiful person here on earth. I send her and all of you my love. ~ Jane