Jax and Jennie sharing a morning laugh. (Photo by Anders Carlson)
Jax meets with his doctor at the University of Colorado Hospital. (Photo by Anders Carlson) We succeeded in getting deep and arresting footage in Colorado this month. We visited our old friend Matt Samet, and our new friend Jennifer Bryant Roeder. Both opened up on camera, and shared compelling stories about their benzo journeys. The crew also headed to Colorado Springs, where we met two families whose children developed a form of epilepsy known as Dravet's Syndrome during infancy. One was diagnosed early on; one was not. But both were given benzodiazepines to treat their seizures.
I would defer to a doctor’s assurance that a benzodiazepine could, indeed, help to control seizures as crisis-management. But children who have Dravet’s are prescribed benzodiazepines to be taken daily. As a matter of fact, if you visit the Dravet Syndrome Foundation website, you will see that clobazam and clonazepam, two benzodiazepines, are at the top of the list for daily treatment protocol. You read that correctly — for daily treatment.
I shudder.
The families we met have seen that benzos make the syndrome worse, with more extreme, violent, and frightening seizures. For those who know what benzo tolerance and withdrawal is, you have privileged insight into the suffering babies and children on benzos endure. What does the Dravet establishment tell itself to continue this practice? And why does their chief advocacy organization in the US, the CT-based Dravet Syndrome Foundation, accept a protocol that results in drug-addicted, additionally damaged children?
Simply put, why are doctors prescribing benzodiazepines to infants and children for long-term use? Are these prescribing physicians being challenged? Are there any evidenced-based Dravet doctors actively and vocally speaking up about benzo effects and hazards? If not, why not?
These drugs are dangerous. They cause debilitating, life-changing harm. Babies on benzos? This cruel practice must stop.
Let's make noise! Let's be heard! Let's get this film made!
Feel free to get in touch!
I would defer to a doctor’s assurance that a benzodiazepine could, indeed, help to control seizures as crisis-management. But children who have Dravet’s are prescribed benzodiazepines to be taken daily. As a matter of fact, if you visit the Dravet Syndrome Foundation website, you will see that clobazam and clonazepam, two benzodiazepines, are at the top of the list for daily treatment protocol. You read that correctly — for daily treatment.
I shudder.
The families we met have seen that benzos make the syndrome worse, with more extreme, violent, and frightening seizures. For those who know what benzo tolerance and withdrawal is, you have privileged insight into the suffering babies and children on benzos endure. What does the Dravet establishment tell itself to continue this practice? And why does their chief advocacy organization in the US, the CT-based Dravet Syndrome Foundation, accept a protocol that results in drug-addicted, additionally damaged children?
Simply put, why are doctors prescribing benzodiazepines to infants and children for long-term use? Are these prescribing physicians being challenged? Are there any evidenced-based Dravet doctors actively and vocally speaking up about benzo effects and hazards? If not, why not?
These drugs are dangerous. They cause debilitating, life-changing harm. Babies on benzos? This cruel practice must stop.
Let's make noise! Let's be heard! Let's get this film made!
Feel free to get in touch!
Franny with her dad Sam. She is free from benzos and responding well to CBD oil. (Photo by Anders Carlson)
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