In October 2012, when Mary Nell was 5 years old, she began rolling her eyes in the back of her head, having spastic arm movements and coughing tics. She would do this when she was excited, agitated or stressed. Days later she was diagnosed with strep throat and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and we began a long terrible journey into autoimmune diseases.
Three months later her eye rolling began to worsen into zoning out (absence seizures) and head dropping (myoclonic seizures), which made us consider a neurologist. We had an EEG done and confirmed that she was having seizures. Further, she regressed across the board –gross & fine motor skills, language, incontinence and behavior.
We still do not have an official diagnosis for her seizure disorder. She has had an MRI, CT scan, 2 comprehensive genetic tests and a spinal tap. She can have from 30-70 seizures a day at various intensities. She has tried three anti-epileptic medications with no reduction in seizures and terrible side effects. They included status absinthe seizures lasting 3-5 days, precocious puberty, zoned out, drugged up, emotional instability, and impulsivity. It has been over a year of hell trying to go up and down on medications and watching our baby slip away. Our neurologist told us that once you fail three drugs the chances of success diminish for new ones.
She was admitted to the hospital in October 2013 with status absence seizures and the powerful drugs they gave her not only did not stop the seizures, but they put her at risk of lung failure and she had to stay in the PICU for observation. We were sent home on yet another drug that was not only highly addictive, but deadly at large doses. We could not see our baby do this anymore.
On December 7, 2013 we started Charlotte’s Web cannabis oil at .05mg/lb/day and with the very first dose we saw immediate improvement in the frequency and intensity of her seizures as well as her awareness. She became more present and we began to see more language. However, as we weaned off her seizure medications (she was on 2 at the time) it became a roller coaster ride as she went through withdrawal symptoms. She became “pharma free” on February 21st, 2014 and although it took a couple of weeks, she began to come out of her drug induced fog. Her monthly status seizure episodes have stopped, she has written her name for the first time, she became aware of how old she is and that made for a wonderful 7th birthday. She is not seizure free but she is 80% better than she was a year ago and smiles and laughs and makes your heart melt.
We feel blessed to have Mary Nell in our lives and she has taught us how to be compassionate and embrace life to its fullest. She is our true champion.