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.
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.
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