We had our appointment with Gabriel’s specialist yesterday and it went well. The doctor agreed to let us wean the diet. He was clear that it would not be his first choice but he understood why we wanted to try. The doctor did a good job in making sure we understood all the factors in play. The nutritionist will now work on lower ratio meals/snacks for us to start preparing for Gabriel. The wean will be very slow and steady…..It seems like it will take several weeks (10-12) or even more. Right now Gabriel is on 4:1, next will be 3.75:1 for 2 weeks, then if everything is successful we will go to 3.50:1 for 2 weeks, etc. I don’t totally understand how long we do that process but we will take it one step at a time. I would have loved to have a simple countdown calendar but that isn’t going to happen. It is going to be one day at a time, hoping and praying for the best and “figuring it out” as we go. Thankful for continued and support and direction from his neurology team. We are also very glad that our visit went well and the doctor agreed to let us try this. We could be totally wrong in asking for this….only time will tell. TOTALLY nerve wracking! It is terrifying to think seizures could be right around the corner again because of our choices. On the flip side so EXCITING! We will know for sure if he needs the diet or not and if he doesn’t cooking and food issues will be so much easier 🙂
I continue to see God’s hand at work in our lives. Today I am hopeful for Gabriel’s future 🙂
What an exciting day! We will cover your family in prayer that he will remain seizure free. It is a nerve wracking experience for sure. You may be surprised at how quickly the wean happens. For us, he was out of ketosis earlier than imagined and off the diet completely after that. I do wish that we had worked harder on the transition because Ben had some serious stomach issues after the diet was over. It was challenging, so take is slowly once out of ketosis. I’m thrilled for you!