Last fall Austen went 48 days without a seizure, but as January turned to February she was having seizures every four days on average. On March 13th we decided to try another non-traditional approach and admitted Austen into the hospital with the hopes of transitioning her onto the ketogenic diet. The diet is hard, with everything that goes in her mouth being carefully weighed an measured, but we had high hopes that this would help our girl.
That was not the case.
Within 12 hours her potassium levels skyrocketed and she developed a cardiac arrhythmia. We stopped the diet immediately and were told it was simply not going to be an option for her at this time. I was devastated. We had made the difficult decision to put her on this diet with the hopes that it would help her, instead it very likely could have killed her.
I want to pause here to say the her reaction to the diet is super, super rare. Her dietician had never seen it, and the epileptologist had only seen it once in his career.
Ever since the fall when Austen’s 48 day seizure free streak ended people have been asking the same few questions on repeat. These questions picked up momentum in January when the seizure frequency picked up, and again a few weeks ago when the diet failed.
“Do you think it’s time to add another med?” “Do you think it’s maybe time to stop this whole cannabis thing?” “Have you thought about that new med trial?” and my personal favorite, “Maybe it’s time to consider Onfi?”
My answer to all of these is NO. If it comes to choosing between another drug and all of it’s side effects, and choosing seizures, I will choose seizures every single time at this point in our journey.
Why? To me it’s simple:
With Austen’s Cannabis nasal spray her seizures last less than 2 minutes on average, with only Diazepam and Clonazepam her average was about 11. That is a huge difference. In addition to that new meds are highly addictive and come with new side effects including, dizziness, sleepiness, nausea, slurred speech, aggression, and hallucinations.* Shorter seizures with fewer side effects gives us the opportunity to give Austen a life worth living. Before cannabis a seizure would incapacitate her for an entire day, now she is up and going within an hour like nothing ever happened. Losing days of your life at a time is no way to live, and neither is living the days you are awake dealing with all those horrible side effects.
The fact of the matter is Austen will probably never be 100% seizure free. Her epilepsy is caused by a gene mutation, and unless the CRISPR gene editing reaches human trials during her lifetime there is really no chance of her getting a shiny new SCN1A gene. It sucks, but facts are facts.
So no, our goal is not seizure freedom, instead our goal is as few seizures as possible, as short of seizures as possible, with as little day to day side effects as possible. Even though she is still having some seizures, Austen’s disease is progressing slower than doctors thought it would based on her history. We attribute that in large part to cannabis.
So yes, we are choosing seizures, even though conventional meds might give us more seizure free days. The seizure free days are never guaranteed, and the side effects are not worth it to us. To us choosing seizures means choosing life, choosing to really live. And as long as that is the case we will continue to do so.
*All side effects are listed as possibilities for the drug Onfi. We are not against Onfi indefinitely but it is a very highly addictive drug with very serious side effects, we moved here in large part to hold off on adding Onfi and would like to hold off on adding it as long as possible.