“Have you tried the ketogenic diet?”
I’ve been asked this question more times than I can count. When people find out that we tried cannabis therapy with Austen, my 6 year old with Dravet Syndrome, before drugs like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we tried the ketogenic diet as well.
The answer is yes.
They ask if the diet worked for them. And our answer is that we don’t know.
You see, Austen only stayed on the ketogenic diet for 12 hours and it was our scariest experience with her other than her status seizures.
Austen was 22 months old when we tried the high-fat, low-carb, and low-sugar diet that helps control seizures in some people with epilepsy. I had to stop weaning her, cold turkey, to start dieting her, and it was a traumatic experience for both of us. There were a lot of tears and screams, and not just from Austen.
When we got to the hospital, things calmed down. Austen liked the high fat foods she got, even though she wasn’t a fan of the keto formula they offered her. When she scrubbed the cream down herself we thought she was off to a good start.
Everything changed overnight.
In the middle of the night, a group of nurses burst into the room along with several doctors. I knew something was wrong when they told me to keep calm. They said everything was stable. I’ve been in the hospital enough with my child to know that when doctors tell me to stay calm when I’m already calm, things are not going well.
They told me Austen’s potassium was a little high and they would have to give her a round of the diuretic Lasix (furosemide) to flush it out of her system. She peed a lot within minutes and they checked her blood again. Her potassium levels were down, so we went back to bed.
This is where my instincts went wrong. I figured things were done by that point and we could go on to 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 feeling on fire. He said Austen’s potassium levels were so high the night before that they feared she would have cardiac arrest.
The doctor told me that theoretically this could be a coincidence in her blood count. But he also let me know that this was an extremely rare complication on a ketogenic diet and that he had only seen it once in his career. The other patient had chosen to continue the diet and later passed because of this condition. Because of this, he was uncomfortable with Austen continuing the diet, and the fear on his face made me feel the same.
It has been four years now and we have seen many ups and downs in our journey with Dravet Syndrome. We have tried many therapies and drugs and have failed and finally seem to have found a match with Fintepla.
Even so, with all of our problems, I didn’t think about putting Austen back on the ketogenic diet. Your doctors say it might have been a fluke and they would be willing to absolve us to try again, but every time I think about it, I remember the fear on this 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 continue to work for Austen and that we won’t make up our minds to try the ketogenic diet again at some point. But for everyone who keeps asking, yes, we’ve tried it. And that’s why she’s not there now.
Note: Dravet Syndrome News is solely a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always contact your doctor or other qualified health care provider with questions about any medical condition. Never disregard or hesitate to seek professional medical advice because you have read something on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company BioNews and are intended to stimulate discussion about problems related to Dravet Syndrome.
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