Why Austen Is Not on the Ketogenic Diet for Seizures
“Have you tried the ketogenic diet?”
I’ve been asked this question more times than I can count. When people learn that we tried cannabis therapy with Austen, my 6-year-old with Dravet syndrome, before medications like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we have tried the ketogenic diet as well.
The answer is yes.
They follow up by asking if the diet worked for her. And our answer is that we don’t know.
You see, Austen only lasted 12 hours on the ketogenic diet, and it was our scariest experience with her, besides her status seizures.
Austen was 22 months old when we tried the high-fat, low-carbohydrate, low-sugar diet, which helps to control seizures in some people with epilepsy. I had to stop weaning her, cold turkey, to start her on the diet, and it was a traumatic experience for both of us. There were a lot of tears and screaming, and not just from Austen.
Once we arrived at the hospital, things calmed down. Austen liked the high-fat foods she was given, even though she wasn’t a fan of the keto formula they offered her. When she scarfed down the heavy cream by itself, we thought she was off to a good start.
Everything changed overnight.
In the middle of the night, a group of nurses rushed into the room, along with several doctors. I knew something was wrong when they told me to stay calm. They said everything was stable. I’ve been in the hospital with my child enough to know that if medical professionals are telling me to remain calm when I am already calm, things are not going well.
They told me Austen’s potassium was a bit high, and they needed to give her a round of the diuretic Lasix (furosemide) to try and flush it out of her system. She peed a lot within minutes, and they checked her blood again. Her potassium levels had gone down, so we went back to bed.
This is where my instincts went awry. I assumed things were handled at this point, and we would be able to go about our hospital stay the next day as planned. That was not the case.
The next morning, the floor epileptologist came into our room. He looked both concerned and relieved, which set my Spidey sense ablaze. He said that Austen’s potassium levels had been so high the previous night that they feared she would go into cardiac arrest.
The doctor told me that this could, in theory, be a fluke in her bloodwork. But he also let me know that this was an extremely rare complication of following a ketogenic diet, and he had only seen it one other time in his career. The other patient had chosen to continue the diet and later passed as a result of this condition. Because of this, he did not feel comfortable allowing Austen to continue with the diet, and the fear on his face led me to feel the same way.
It has been four years now, and we have faced a lot of ups and downs on our journey with Dravet syndrome. We’ve tried and failed many therapies and drugs, and seem to have finally found a match with Fintepla.
Still, through all of our issues, I have not considered putting Austen back on the ketogenic diet. Her doctors say it might have been a fluke, and they would be willing to clear us to try again, but every time I consider it, I remember the fear on that doctor’s face. I know he was scared of losing my baby that night, and that scared me.
I am not sure what the future holds. I cannot guarantee that Fintepla will keep working for Austen and that we won’t decide at some point to try the ketogenic diet again. But for all who keep asking, yes, we have tried it. And this is why she isn’t on it now.
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Margaret Neubauer
I appreciate your perspective based on your personal experience. However it is so difficult for the parents involved in providing the ketogenic diet- expensive, timely to prepare, and often rejected. I wish your posts could validate and encourage them a little. We are trying so hard!