So Far, So BAD!!

There will always be speedbumps in your plans that will slow you down. It's the pot holes that mess up everything. The Ketogenic Diet should be a pretty smooth transition: You give the child certain measured foods, certain approved medicines, you check their ketone levels in the urine, and you give them vitamin supplements that the food lacks. No biggie. Ever since Day 1, Jordyn has had issues with almost every aspect of the diet. First, she vomited in the hospital because she is allergic to both Soy and Milk. After we got home, she was vomiting up a certain approved drink because it's first ingredient is Citric Acid and she's apparantly intolerant to that. Then, she started spitting up and vomiting because the vitamin supplement was way too "heavy" on her tummy. It's been a little under a month and the poor child has been sick for more than half of it.

Not only that, but with all the vomiting she hasn't been getting the full effect of her seizure medicines. It's the medicines that have been controlling her seizures this whole time, not the diet. She hasn't even had ANY ketones since the 3rd day into the diet. And THAT was only because she wasn't eating well because of all the vomiting. {grrr}

Pot holes in the plan. But that doesn't mean it's botched. It just means we'll start over with more knowledge on what to expect. For now, though, John and I have decided to take a break and let Jordyn have her regular formula and Gerber foods and get well. The only foods that were "coating" her tummy were Micro-Lipids and tiny amounts of beef and applejuice, so this break is necessary for her to regain her strength and give her belly a break. When I told her Neurologist about our decision to take her off the diet for a while, he replied "You have been right about everything so far, so I trust your decision". I loved hearing that, of course! :)
There's a chance that even though she wasn't in ketosis, the modified diet could have still had an affect on her seizures. She hasn't had any since we put her back on Phenobarb, but there's always a "Honeymoon Period" where the great no-seizure time wears off. If she starts having seizures again, we'll start the diet again. If they don't stop still, then the Honeymoon Period was in full effect, and the diet doesn't work for Jordyn.
At least then, we'll be able to have a smoother start with the diet now that we know where all those pot holes are. :) I have high hopes for it still.

We started her back on Nutramigen formula and baby foods on the 9th, so we'll see what happens next. Hopefully, the medicine concoction (Phenobarb, Zonegran, and Vigabatrin) prevails... I'm still working out the kinks in Plan B, which is surgery Just in Case.

Thanks for reading!

Happy 30th Wedding Anniversary to Debbie and Terry Kuns
and
Happy Birthday to Annie Gomez!
Both special days were on October 8th.

Kristen, John, and Jordyn (16 months old)