Starting Ketocal

Today is the day.  We are starting Ketocal in a slow initiation of the ketogenic diet.  This was actually our original plan, as in my research I'd seen that kids tended to do better when they were able to start on the diet more slowly, allowing their bodies to get into ketosis more gradually (and just used to a different formula, etc.).  However, when she started getting so much worse so quickly, and was seizing every waking moment, we changed our plans and moved forward with the hospital admission to start the diet quickly to try to control her seizures sooner since the slow initiation takes several weeks to get them into ketosis. 

However, with me getting appendicitis and having to postpone her hospitalization to start the diet, her doctors and I decided it was best to go ahead with the original plan and go ahead and at least start introducing the formula to her.  Then, in a few weeks when we do go up to get her to the full strength of the formula, she will be fully in ketosis.  Then they can go ahead and do all the close monitoring and testing as she's on the full strength since that's the part they were concerned about her being at home anyway. 

We will also do an MRI while we're up there since her urologist wants an MRI of her spine to check if her spinal cord is tethered.  So, we will take care of both things at once.  The plan is to go up the week of December 3rd.

So these next two weeks please be in prayer as we start this process of embarking on this new treatment and starting this new formula.  Pray that she tolerates the new formula well, and that her body tolerates this process of going into ketosis long term.  Pray that the seizures respond to the treatment and that she gets relief. 

She's had several days of a high dose of prednisone, and between that and being on cipro for her latest UTI, she's been much more awake and active this week, and her seizures have already decreased.  She's not seizing every minute her eyes are open, which is a huge answer to prayer.  I'm not sure if it was the prednisone or the better treatment for her UTI, but either way we are thankful for a slight reprieve.