Aiden's Journey

One Little Boy's Battle with Dravet Syndrome


Keto Admission

Posted by Nicole on May 21, 2014 at 10:35 PM

Like I promised: Not a blog! But an update for those who are curious ☺ Aiden was admitted to Children’s on Monday morning after a 12 hour fast to start the ketogenic diet. He was already in pretty deep ketosis (where the body is burning fats, producing ketones, instead of burning carbs for energy) thanks to a high fat modified Atkins style diet we’d been doing to prepare him for keto.

Monday morning was fine, until he became hungry. He was allowed half of his normal calorie intake via Ketocal, a formula made to mimic the 4:1 ketogenic diet ratio. He was hungry, tired, and overhydrated (we pushed way too many fluids – who actually takes 64 oz in a day?!?), and got pretty sick that evening. I’m certain he’ll never touch any flavored water I set before his lips again. He seized all night. He was finishing a cluster that started over the weekend, so they were incredibly short and no big deal, but it’s tough to see your baby miserable starting a diet that’s supposed to stop seizures.. AND seizing.

Tuesday was better. He had formula in the morning and keto meals the rest of the day. He was so happy to have food he didn’t mind the odd smelling hospital version of keto meals. His g-tube is now officially my best friend. We were close before, but now we’re true BFFs. Aiden is happy as a clam to dip his veggies and meat in ranch dressing or butter, and have his oils sent through his tube! He was fluttery and his body was still a little stressed out from the fasting and vomiting the day before, but he was doing better. One tiny seizure overnight Tuesday.

Wednesday I was able to prove my competency with the meal planning spreadsheet and make his meals up on my own, ordering ingredients from the kitchen as needed. His body adjusted so well to the diet (thanks, I think, to his starting it early) that we were discharged! Into a tornado! Just kidding, they kept us in the hallway with all of the other patients and their beeping monitors while a tornado passed a block away from the hospital. They take such good care of us ☺

He’s home, we’re happier, and I think the diet is off to a good start. He's tired and scattered - not processing completely normally, but those will both get better with time. It’s too soon to tell if it’ll help or hurt, but I’m so glad we’re on our way to knowing. Thanks for all of your support!

Categories: New Treatments

Post a Comment


Oops, you forgot something.


The words you entered did not match the given text. Please try again.

Already a member? Sign In


Reply Karen Foster
11:30 PM on May 21, 2014 
Glad to hear you are off to a good start :) Hope this brings him more seizure free days and nights :) You rock mama!
Reply Scottweipt
8:07 PM on October 27, 2017