Maitri had a water birth and came into our home with a big splash. She will tell you that she is a water sign. Maitri walked when she turned one.
She developed typically and uniquely until age 5 1/2 when her seizures began. She was always very content to be by herself. She never liked to be touched or too close to other people. At age 4 she had Rotavirus, after that she began to lose the ability to have eye contact and to respond to questions and her name.
In the fall of 2009, she began having nightmares or what I thought were nightmares. At first it was once a month but over the next 6 moths the episodes at night increased to 4-5 times per night. The pediatrician thought it was night terrors. Then it began happening in the day and the doctor thought it was panic attacks. From the time the “episodes” began it took almost 9 months before Maitri was diagnosed with severe life threatening epilepsy. She was having 60 seizures each day.
The first medicine she tried Keppra caused her to run and hide and she knocked out her front teeth. The next four months Maitri tried 7 different seizure medicines. They all failed. The side effects were horrible. Over the next four years Maitri tried 13 medicines plus the Ketogenic Diet, the Modified Atkins diet and the Feingold Diet. We learned her triggers and changed our lives. Maitri could only exercise for 10-20 minutes before going in to status. Any holidays led to status seizures. Maitri had to be hospitalized over 30 times in the past 4 years. Her anxiety disorder and sensory integration disorder made it very difficult to be placed in school. For the first 3 years Maitri could not attend school because of the number of seizures. When she would go to her tutoring sessions they often ended early because of seizures.
Last January 2013 was the first time Maitri was able to go to school for almost a full day. She had a 1:1 named Caitlin who helped her transition very slowly into being in a classroom with 8 other children. Caitlin helped Maitri to begin to be part of a school routine.
In the spring I heard about Charlotte Figi and the new treatment with Cannabis that was helping so many children with Intractable Epilepsy. I knew that this was something that Maitri needed to try. I helped to organize for Paige Figi and the Stanley brothers to visit Vermont. After a few weeks I knew it was time to make the leap and go to Colorado so that Maitri could have a chance at a more typical life. When we arrived in Colorado Maitri was taking 2300 mg Keppra, 200 mg Zonegran, 300 mg Vimpat, 2 mg Clonazpeam and Midazolam or Diastat as needed for status seizures. She began Charlotte’s Web on January 10th, 2014. She is now taking 180mg/daily of the high CBD oil. She has 80 percent reduction in her seizures. Every 7-10 days her pharmaceuticals are reduced.
She is now taking 1400 mg Keppra, 50 mg Zonegran, 200 mg Vimpat and 0.85 mg Clonazepam. She went from needing her rescue medicine 2 times each week to needing it only twice in the past 3 months. This is already a victory for Maitri! We will continue to wean her pharmaceuticals with the support of her Care Team. We are forever thankful to Paige, Matt and the all beautiful Figi children, the Stanley Family and to all the brave families who have come forward to try this new therapy and stand up for the children who deserve and need the opportunity to try Cannabis.