I am the mother of a 27 year old daughter. Since infancy she has battled Dravet Syndrome. It has been an arduous but loving journey for the entire family.
In addressing the last four years of enhancing our daughter's treatment plan for Dravet, the most notable improvements have been the ability to reduce pharmaceuticals with the assistance of Elysium CBD. Having started on Elysium in 2014 after 24 years with three of the top epilepsy centers in Southern California, we started this chapter of our journey with guarded expectations.
However, to our delight, within the first four months we witnessed a 35% reduction in seizures and our neurologist began a very conservative reduction of Klonopin (a benzodiazepine that our daughter had been on for over 20 years.)
This is perhaps our greatest accomplishment thus far and, after 28 months of careful weaning, our daughter is completely off Klonopin and we have hopefully limited the risks associated with it’s long term use.
In addition, within the first four months of Elysium use, our primary care doctor noted an improvement in our daughter’s A1c lab results (pre-diabetic state), and removed her daily Metformin which was also remarkable for her overall health.
Although Dravet Syndrome is extremely hard to regulate, over the past four years, we have been blessed with a crisis free period in which the only real battles we have faced had specific explanations for increased seizure activity. Some of the lessons learned during this period are that not all CBD oils will have the same effect on a patient.
We did attempt a second oil for two months early during our Elysium journey and unfortunately the results were extremely different. The product was poorly tolerated, with emotional and physical side effects and an increase in seizure activity. We were very lucky to reinstate Elysium and the benefits soon returned.
Additionally, we have found that the restrictions on CBD oil in other states has required our epileptologist to prescribe bridging medications for travel, which may present a temporary reduction to the healing aspects of the CBD oil: as well, these interim medications also reintroduce pharmaceutical side effects that in our case are so impactful on our daughter’s quality of life.
This journey, not unlike significant health problems, is constantly unfolding and requires respect, patience and flexibility in moving forward toward health.
There is so much hope in assessing the future for our daughter and we pray that we will eventually see the integration of this healing modality into the science of enhancing health for all who so desperately need it.