This is our beautiful 4-yr-old daughter Millie. She has been diagnosed with intractable infantile spasms, now transitioned into Lennox Gastaut Syndrome (LGS). Infantile Spasms is a rare form of early onset epilepsy in which the brain is shown to create a chaotic brain pattern. ‘Intractable’ is a term used by the medical community to describe a patient whose seizures cannot be controlled by medication.
Some families dealing with epilepsy have used up to 14 different medications, Millie has been on 10 different medications, starting since the age of 3 months.
She started out on what are considered conservative Anti-Epileptic medications; Trileptal, Topamax and Keppra. It 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 dose 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 brain 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. 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, 5 PICU stays, 6 PICC lines, 1 arterial line, 1 central line, and contracted a staph infection. 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 lose. We flew out the week before Christmas to establish residency and proceed with the red card application (or Medical Marijuana Application) We moved to Colorado in January, when Millie was able to start THCa oil with promising success.
We were then notified on Millie’s 2nd Birthday that we were off the waitlist for Charlotte’s Web, what a miraculous day!!!
Though the last 2 years have not been easy, they have been cherished. What we see emerging is a new child, a little girl that is now able to hold her head, sit up, smile, vocalize and interact. The biggest improvement, for Millie and our entire family, is the increase in her quality of life. With only 2 hospital stays in the last 3 years, we have been able to concentrate on enjoying life as opposed to staying alive...this has made all the difference in the world!
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DETAILS: Made with high quality pink and purple hemp cord. It has a wood bead creating a bead and loop closure, making them secure enough to stay on but easy enough to remove when needed. 20% of this bracelet will be donated to the Realm Cares fund.
You can also choose a "I'm committed" knot for a closure, this option does not have a wood bead and requires you to tie the bracelet on yourself. Watch the instructional video here.
Sizes (General Guidelines)
Petite: 5.5 inches
Small: 6.5 inches
Average: 7.5 inches
Large: 8 inches