Morgan had her first seizure 9 hours after her 4 month DTaP vaccine on election day, November 6, 2012, at 9:32 pm. We were rushed to a local hospital, transferred to a Children's Hospital where we stayed overnight, had numerous tests and was told it was a febrile seizure and she would likely never have another. A month later she had another one, and three days after that, another. After her third seizure, we were sent home from Children's Hospital with Keppra and were referred to a local neurologist. The neurologist said she would like to test Morgan for epilepsy, never indicating her underlying fear.
Three Months later on March 5, 2013 I received a call that Morgan's test came back positive. She told me Morgan had Dravet Syndrome. When I looked it up my world crumbled; Developmental delays, uncontrollable seizures, will not survive to adulthood, unable to live a normal life, these were all the things that I read for the future of my baby girl. I began sobbing and did not know what to do or what to think or how to feel...I was numb. I read stories of other children with Dravet and it seemed more and more hopeless, I could not imagine my healthy, happy girl becoming debilitated by such a terrible disease. I found support on Facebook and talked to parents on the phone that gave me insight, advice, a plan, and HOPE. Within a few days, I went from a grieving mother to a warrior to fight and save my little girl.
All of this plan was daring and unknown to our neurologist--she didn't know much about Dravet, she had never heard of the GAPS diet, weaning off meds that were working, and this thing called Cannabidiol (CBD). I started with a diet, I weaned her off formula and started a real food diet. Next step, wean her off of the anti-epileptic drug she had been on for the past three months that actually seemed to be working, she hadn't had a seizure since we started it. Dravet Syndrome is a medication resistant form of epilepsy, so eventually her body would develop a resistance to the medication and it would no longer prevent seizures. When? We had no idea, it could be days, months or years. My thought process was to wean her off before her seizures became severe and constant and we reached the resistant phase. This was the scary, I knew she would have seizures but she had only had three seizures up to this point so I didn't really know what to expect. I asked parents how they weaned off these drugs and they didn't really have an answer, no one seemed to be weaning off, unless to start a different medication.
The next couple months were great, she was doing great on the diet and she had no seizures while weaning the medication yet. In June, we got down the last few weeks of the medication and she did start to have withdrawal seizures. They were every few days and required emergency drugs to make them stop, as had all her seizures. At this point, I decided to move forward with our last step, and get Morgan her medical marijuana card. She was 11 months old and was probably one of the youngest in the state of California to have her recommendation. I asked some people where to go and what to get, I didn't really understand the science of CBD or know what I was doing at this point. I went to the dispensary and dropped $300 on two bottles of "Cannabidiol" tincture. I didn't really know what to do, how much to give, when to give, how to give...no manual came with my purchase. I tried them and they really didn't seem to help any seizure activity no matter what dosing I gave her. I got a name of a dispensary with a tincture that should work for us and purchased some bottles. It was working, she was having about one seizure a week.
Until about two months into the cannabidiol and her seizures were getting closer together and for no apparent reason. I started making dietary changes to see if we could have any noticeable change, I spoke with a nutritionist and moved towards a paleo diet. Along with that, I started journaling everything, foods, moods, sleeping patterns, and moon phases. I also found another strain of cannabidiol with better ratios for treating epilepsy. What makes all of this such a trial and error process is, what works for one child, does not seem to work for another. I speak with parents that have been doing this for years, and they recommend experimenting to find the right balance--it is an ever changing and constant moving puzzle.
In January of 2014, I met the owner of Elysium Wellness. We discussed a ratio that would work and he created an oil for Morgan based on what we had been using. The oil was working better than anything we had tried and it was working on all levels. Initially, she had a lot of seizures with the brand transition. However, her seizures were shorter and not requiring a rescue med for the first time ever. Elysium is amazing and unique, they are using the data that we have tracked over the last two years to develop and improve their products. There is a chemist on staff who extracts, blends and formulates the oil so each batch is exactly the same. They do not purchase outside flower, and all of their flowers are maintained on the property to avoid contamination between other products. It is hands down the cleanest, safest, most consistent and reliable product we have found and Morgan is proof of that.
Morgan is now 3 years old and the doctors are amazed at how well she is doing. She typically has 1-2 Grand Mal seizures a week, that usually last 1-4 minutes with no pharmaceutical intervention. We managed to avoid the Emergency Room for 1 1/2 years, which is amazing! Morgan goes to a special needs preschool and receives all therapies during her school day and she has a personal nurse by her side at all times. We have found an oil that is working extremely well and have an amazing support system within that. We are blessed to have found Elysium and discovered hope for the future.