And so it Begins: Movement Episodes Begin Again

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.

We have gotten back to checking Drake’s ketones on pee strips, after having not checked them at all for years (except for with his blood draw at his neuro appts every 6 months). And we are now seeing “trace” and “small” readouts for the first time. Granted we have relaxed his ratio to MAD (Modified Atkins Diet 1 :1). But he has been on MAD for over 6 months without any difficulties.

So what has changed? North Carolina has made national news with how bad allergy season is this year. It has been killing me and Chase, Drake’s younger brother, but other then some sneezing, Drake has been fine. Chase also came down with a bad cold and high fever, but Drake, in true keto warrior fashion, didn’t catch it and was fine. As an aside he hasn’t dealt with a severe cold since he started the diet.

He is almost 10 years old, and while I think he has a few more years before puberty, he could be dealing with insulin resistance. At some point in puberty, kids start producing a bit of extra insulin for no good reason. Think of the teenager who eats a whole pizza and then is hungry for a burger. Usually, it is a humorous feeding frenzy, but for a keto kid, insulin triggers a shutdown of the ketone metabolic cycle! For someone with Glut1, those ketones are critical and the reason to avoid nearly all carbs is to avoid triggering the “insulin-lockdown” of all ketone production. It’s really not fair that someone perfectly following their diet gets a dose on insulin out-of-the-blue and has to claw back up to ketosis through no fault of their own. But here we are.

So when your brain needs ketones for fuel what do you do when your body isn’t producing ketones like it used to? Drake has increased his fat intake – mostly from heavy cream and butter and we are increasing his ratio back up to 2:1. That helps, but our fat adapted kid needs more. Time for our first foray into MCT oil.

We have started with 5 to 10 ml of MCT oil on a haphazard schedule. It actually has been kind of fun! We bought these test tubes on Amazon and have been filling them with MCT oil concoctions. We have made a few creations by mixing truvia and keto-safe flavor drops to make fun blends that don’t taste so awful. We have even come up with names for our MAD MCT OIL recipes like like Smores, chocolate mint, and the new favorite: Cinnamon Roll Marshmallow.

Drake loves that he has a power boost backup for when he needs it. Our worry is that he won’t realize that he is getting close to a movement episode and won’t drink it before his legs start to give him trouble. Also as fat adapted as he is, he is still experiencing some GI troubles with the MCT oil. Drinking too much can lead to getting stuck in a bathroom for awhile, yikes!. The best thing about MCT oil is that it gets right into your system to raises ketones almost immediately, unlike fat from heavy cream, butter and olive oil.

Hopefully our adventures into MCT oil make the keto diet effective again. It is fun for Drake to have a set of tasty power-boost concoctions under his control. And we have learned that Drake is quite an awesome dude. We have been dreading the day when his movement episodes would come back. But really he is the same old Drake, cracking jokes, telling us not to worry, and powering through with some extra snuggles from his Mom and Dad.

Author: Debra Lane

Debra & Ken Lane maintain this blog to chronicle their son's journey of living with the rare neurometabolic disorder, Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS for short). And hope to raise awareness and understanding of the non-epileptic form of Glut1 DS. Drake’s Glut1 journey started at the age of 3 with episodes of Ataxia and Dyskinesia. Now at the age of 8 he is 2 years symptom-free — thanks to the right diagnosis and the ketogenic diet.

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