This is our beautiful 2-yr-old daughter Millie. She has been diagnosed with intractable infantile spasms. Infantile Spasms is a rare form of early onset epilepsy in which the brain is shown to seize constantly. Intractable is a term used by the medical community to describe a patient whose seizures can not be controlled by medication.
Some families dealing with epilepsy have used up to 14 different medications, Millie has been on 8 different medications, starting since the age of 3 months, that is a total of THREE QUARTERS of her life on powerful medications.
She started out on what are considered conservative Anti-Epileptic medications; Trileptal, Topamax and Keppra. If became clear that these were not helping so she was then put on Clonazepam, a benzodiazepine which is a psychoactive medication used to treat anxiety, depression and a variety of other psychiatric conditions. She was also put on a large does of Sabril, a medication whose main side effect is blindness and even at up to 2,000 mg a day the medication had no effect on Millie’s seizures or EEG.
The Neuroscience Center at Nationwide Children’s Hospital in Columbus Ohio has researched tirelessly to provide the following statistic:
The first seizure medication chosen has about a 60% chance of controlling seizures. If that medication fails, the chance of seizure control drops to 10%. If 2 medications fail then there is only a 1-2% chance of controlling seizures; at which point there currently are 2 other options: diet and brain surgery.
At 3 months old Millie was also prescribed the ketogenic diet; a specialty diet designed to adjust the body’s chemistry by producing ketones to fuel the body as opposed to glucose. The diet is successful in a large amount of patients however Millie was not one of these cases. For 9 months she gained weight only in ounces and grew only in centimeters; for her 1st birthday she was still in 3-6 month clothing. However slow growth and weight loss is not uncommon for the ketogenic diet, it also causes bone deterioration and osteoporosis-like symptoms resulting in bone fractures in a number of patients. The diet did not work at all; in June of 2013 Millie’s body started going into metabolic acidosis, though the root cause was misdiagnosed and in August of 2013 Millie’s kidneys shut down. Through the summer of 2013 she required 9 blood transfusions, had 5 PICU stays, 6 PICC lines, 1 staph infection and 1 central line. Upon request of our nutritionist at Cincinnati Children’s hospital, the staff at Vanderbilt removed her from the ketogenic diet. So yet again, another failed attempt to help my daughter.
It was at this point in November of 2013 that we further investigated the rumors of medical cannabis in the treatment of epilepsy. We consulted our neurology team at Cincinnati Children’s hospital and they felt we had nothing to loose. We moved to Colorado in January and Millie has now been on THCa oil for 6 weeks in which her seizure activity has decreased 75-90%.
THCa is a whole plant medication showing significant results in Australia of treating seizures along with THC which acts identical to benzodiazepines in patients who require such medications however without the harsh side effects.
We were notified on Millie’s 2nd Birthday that we were off the wait list for Charlotte’s Web and are excited to add that into her mix. Praying we find the right combo to help our little girl.
Patients young and old need another option to treat epilepsy, especially one such as medical cannabis that has studied and has documented positive results from around the world. I do not believe our daughter is beyond help, I do believe that her and the multitude of others like her have hope in medical cannabis. We have been told by doctors time and time again, as have ALL of the families in Colorado, that there is nothing we can do at this point, however medical cannabis is proving them wrong. We refuse to give up.