Hello, everyone!
We got back from the hospital late Friday afternoon. It was an extremely long and tiring week! The process of starting Jordyn on the Ketogenic Diet on Monday should have been a fairly easy transition, but the first 2 days were horrible. It turns out that she is allergic to not only Soy products, but Milk products, too. For a whole month prior to the diet, I tested her allergies to milk, and she didn't show any signs of sickness, so this was a tiny surprise to me. The main menu item on her diet was a formula that is soy-based and cream. After the first evening of gulping down the two ingredients, she was not happy to say the least. She had terrible tummy problems ( I don't want to elaborate on them too much- just know they were BAD) and her seizures came back full force. She wouldn't take down her medicine, and her blood sugar levels were extremely low. John and I were very scared and we didn't know what to do with ourselves. It was very hard to see her so miserable and not be able to do anything about it.
By the end of the 3rd day, she had the color back in her face and she was eating well. What we did was take the soy and milk completely out of the equation. It wasn't necesary to have the formula anyway- it was just going to be a little bit easier to have it around for trips and late-night feedings.
We were discharged on Friday with a clean bill of health. Jordyn is loving her diet which consists of meals like Gerber Beef & Gravy, Gerber Pears, and Micro-Lipids (a fat solution that takes the place of cream) and other fun foods like diet Kool-Aid and avacados. Everything has to be weighed to the tenth of a gram and served at specific times of the day, but I've got the hang of it. It's not a hard diet, but it is tedious.
Jordyn has not had any seizures or spasms, and has actually seemed to be in a better mood. She'll track objects a little longer and she'll even look straight into your eyes for more than a few seconds. The doctor says we can start weaning her off of her seizure medicines within the next few weeks! I know her sweet, smiling face will emerge shortly after that begins!
We still have to check her blood sugar levels here at the house with a One-Touch Ultra, and we check her Ketone (the body's natural enzyme that will let us know she's still ketonic) levels to make sure they are good and high.
All in all, after the first couple of days, this diet is going really well! I will post another update in a few weeks and I will let you know.
Kristen, John, and Jordyn
