What has changed?
With Drake’s long movement-disorder freedom, we have forgotten what it is like to have him experience leg spasms (dyskinesia) again. We will be forever grateful to the ketogenic diet and the difference it has made in his life, and the difference it has made in the lives of his parents, but we have come to a point where he isn’t producing ketones like he used to.
We knew this day would come; but we didn’t think it would happen so soon. Glut1 is such an individual disease. We take all the information we hear with a grain of salt. It can cause cognitive delays, except for when it doesn’t, it can cause seizures, except for when it doesn’t. It can be associated with ADHD and Autism, except for when it isn’t. We feel so lucky that Drake is a mild case and doesn’t have many of the problems associated with Glut1.
So knowing that the movement episodes can sometimes become worse over time as your kid ages and has hormonal changes and gets near puberty is something we filed away, to be dealt with at a later time. Hearing that the ketogenic diet can lose effectiveness over time is also something we thought we could just deal with later. But now, after 3 years, we are experiencing the loss in efficacy in real time and Drake has had 3 bad movement episodes in the past few weeks. Continue reading “And so it Begins: Movement Episodes Begin Again”