Status epilepticus (SE) is a serious, problematic, frightening, and often fatal condition, relating to uncontrolled seizures that continue to happen without any type of recovery between the seizures. SE is a medical emergency which requires immediate medical treatment. And if you our your loved one has experienced an episode of SE, you know how serious it can be.
Refractory status epilepticus (RSE) refers to the condition when these seizures have not responded to treatment, even a variety of treatments—as in all FDA-approved treatments, which is a very dangerous condition, which can also lead to SE in some cases.
The National Institutes of Health’s Pub Med site has a very interesting and informative article about the effects of clobazam and how it responded in clinical studies. You can read the article here.
NIH scientists studied this drug and found that approximately 25% of people who’ve been diagnosed with status epilepticus have been diagnosed with refractory epilepsy, responded well to this drug. However, I can’t help but wonder about the 75% of people (and their loved ones) who continue to suffer with uncontrolled, acute seizures!
What is it like to live in fear of SE? This must be gut-wrenching for mothers, fathers, sons and daughters. With an uncle who suffered from SE late in his life but has managed to survive until 52, I remain vigilant. My eyes are open in hopes that improved outcomes will become a real possibility, a cure—anything to help!
Now I don’t know about you, but having a 25% potential effective outcome does not seem all that promising to me. Ugh, would you agree? The article I reviewed basically says that clobazam is a promising (and fairly reasonable) in treating SE. In fact, it calls it “reasonable”—especially when adding it to the current treatment plan to control seizures. But the study also goes on to say that the results were significantly lower than what was originally published.
I also have to remember that every person is different–you never know how your particular body chemistry will react to a medicine. I am also reminded that, sometimes, making sense of clinical trial results can be a real challenge!