Giovanni was born on May 22, 1999. At three months old he developed Infantile Spasms; he was having seizures that we could see, but he was also having seizures that we couldn’t see. He was started on Phenobarbital and Tegratol. Unfortunately, they were not successful in controlling his seizures. After nine months and no improvement, I took him to Stanford Hospital where they gave us more drug options, and prescribed Topamax. After starting Topamax, within one week his seizures were gone.
Eventually, Giovanni was able to wean off all the medicine when he was four years old and stayed off until he was seven. However, on March 16, 2013 our lives changed forever when Giovanni had his worst seizure ever; he was unconscious, having back to back seizures and stopped breathing numerous times.
We went to the Emergency Room and were told that it was nothing more than a breakthrough seizure. He had been seizure free for more than seven years at that point and I was not convinced that it was a “breakthrough seizure”. After a seventeen day admission, we left with a heart breaking diagnosis of Lennox Gastaut Syndrome; a rare form of epilepsy that is resistant to pharmaceutical drugs and can cause hundreds of seizures a day. Giovanni went from being very focused and interactive to a complete zombie. The neurologist medicated him to the point that he could no longer hold his head up or eat food with texture because he would choke. In June of 2013 Giovanni had a Vagus Nerve Stimulator implanted which was increased to the max setting and still did not help control his seizures.
In January 2014 the doctors said “we have done all we can do”. It was at this point, I mentioned CBD. I had the support of our neurologist and on Feb 24, 2014 he received his first dose of CBD. He did have a positive response with a noticeable reduction in seizures within a few days. However, after a few months the problem of consistent medicine became a major problem and I was in search of something better. In April we were presented with an opportunity to try Elysium CBD oil, it was different than what we had been trying and was hearing of good results. Within a few days of being on Elysium, he had his first seizure free day! We were still having some occasional rough days and finally became convinced to try a diet change.
In May 2014, I changed Giovanni’s diet to gluten, preservative, artificial flavor and artificial color free diet, while also limiting his sugar and carbohydrate intake. Within a few days we noticed a huge difference. With a combination of the new oil and his new diet, Giovanni went from having 15-20 minute seizures, down to 30 second seizures. His focus was back and he was holding his head up more, was eating, drinking and giving high fives! The doctors were blown away by Giovanni’s progress and wanted to start weaning his anti-seizure meds. We started to wean and this proved to be very hard on Giovanni, causing him physical withdrawals. This was a turning point; I realized that he needed THC to combat the withdrawal effects. I started Elysium’s THC booster that carries high CBD as well as a healthy dose of THC. Giovanni has now been on Elysium CBD oil for nine months and doing amazing…we have our life back. He is going to school full days and is able to LIVE.
My goal is to wean Giovanni completely off pharmaceuticals and be able to treat him solely with CBD and THC oil. I thank God for leading me to this amazing medicine and new way of life. For the first time in a long time, I look forward to the future and what it will bring, not only for my son but for our entire family. I am eager to help other families achieve a better quality of life, just as we have, and to share everything I have learned from this journey. God has put us on this path for a reason and I know that I am meant to help others throughout this process.