May 16, 2017 – 6 month follow-up MRI
She did great! The beast has not grown! And now, because it is still stable, she doesn’t have to do another MRI for an entire year! This is absolutely amazing compared to the original diagnosis of having to get an MRI every 3 months.
June 1, 2017 – Keto follow-up
We gave it one hell of a try and stuck with it for 5 months. Every week I would chart out her seizures and eventually it became painfully clear that it was not working. In June we made the decision, with her doctors, to stop the diet. We happily would have carried on with the diet forever, if it had worked. However, as soon as the realization hit that it wasn’t working, it became more and more frustrating and increasingly annoying to stick to it.
Seeing Reagan enjoy all the foods that she couldn’t enjoy while on keto has proved to us even more what a trooper she really is. I struggle to make it even a week without chocolate and yet she never complained and never broke down. She trusted us and went with it, all the while watching the other kids at school, and the rest of the world, eat anything they wanted. I don’t know anyone else who would have that head “let’s do this” attitude that she had. I am still in awe of how she handled herself over those 5 months.
Meds
Currently, Reagan is still on two anti-epileptic drugs. During the Keto months, we had increased one of them to the max dose for her body size. Her seizures continued to increase, so after two months we decreased it back to her pre-keto dosage. We were only one increase away from the max dose of her second medication. So, after we went off keto, and got a non-keto baseline, we increased her second medication to its maximum dose. This has done nothing, and her seizures continued to increase in frequency. Because we have maxed out both of those medications, we can add them to our list of medications that do not work. This means that we can start the very slow wean off of them, one at a time, and start looking towards new medications or new approaches.
Reagan post MRI, making her way up to Neuro-Oncology for the good news!
Enjoying not only her ice cream, but Mom & Dad’s too! She was so excited to be able to go and get ice cream with us.