When Sonzee was first diagnosed, tests were performed to determine if a specific diet would be beneficial with controlling her seizures. The doctors here in Phoenix were looking primarily for a glut-1 deficiency, and stated a special diet could be the fix for the seizures if this was found to be the cause in Sonzee's case. In the end, we know it ended up being CDKL5, and the discussion of the special diet was placed temporarily on hold.
I have to be honest; I was relieved at the time. I did not know much about the diet other than it was called "Ketogenic". I did not take any interest in researching it due to the millions of articles I was reading on seizures, epilepsy, and CDKL5. I was relieved to know that I could continue to breastfeed Sonzee as I intended to do.
I have breastfed all four of my children, for various lengths of times. I had anticipated breastfeeding my fourth child through his/her first year and into his/her second year of life. I had never done that with any of my other children and felt this would be a special experience that we would share. Today I feel like I have received another punch to the gut. While I am going to be using breastmilk within the diet, it will need to be pumped, and therefore I have approximately 2 weeks (at most) left of my breastfeeding experience with Sonzee...and I am crushed.
I know we need to try this diet. I am hopeful between the diet, Keppra, and the CBD oil she will achieve seizure freedom and we can then lower her Keppra or have it out of her system completely. For this reason alone I know it will be worth it. It is still scary whenever we make a decision regarding her care, and it always causes me great doubt at the beginning. I know in a couple of weeks the feeling in the pit of my stomach will be much less, and I will feel more confident that we made the "right" choice, but for now, I am scared.
For those of you who are like me and have limited to no knowledge of the Ketogenic Diet, here is some information that will be helpful for all of us.
What is the Ketogenic Diet?
It is a special diet that is high in fat and is used to treat seizures. The diet eliminates foods such as sweets, bread, cereal, pasta, and milk. All food must be carefully planned and weighed on a gram scale.
How does the diet work?
The special combination of foods causes the body to use mostly fats for energy; the body will produce ketones as an end result.
How effective if the diet at controlling/eliminating seizures?
Studies have followed children on the diet for long periods of time, resulting in 1/3 of children on the diet having greater than 90% seizure control, becoming seizure free. An additional 1/3 experience 50% reduction in seizures. The remaining 1/3 discontinue the diet due to its ineffectiveness or the difficulty.
What are adverse effects of the diet?
Excessive thirstiness, frequent urination, fatigue, hunger, confusion, tachycardia, sweating, chills, shakiness, constipation
Kidney stones, elevated lipids, and decreased growth rate.
We will slowly be introduced into the diet with formula and breastmilk combined together, with her ratio being 3:1. A specific meal plan will be created for her. We will be completing twice-daily ketone testing, weekly weight checks and labs every month-3 months. She will also be having ultrasounds of her kidney, heart, and other organs at the start and then each year she is on the diet. The plan at this point is for her to remain on the diet for a minimum of 3 months from the start date for 2-3 years or longer. If we experience any challenges along the way that indicate we need to end treatment, and we will begin a wean.
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