MARY NELL

blogmarynell

MARY NELL

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.

Advertisements

3 thoughts on “MARY NELL

  1. body{font-size:10pt;font-family:arial,sans-serif;background-color:#ffffff;color:black;}p{margin:0px;}Thanks for the new post. What possibleobjection could anyone in government have to the parents of these dear children havinga prescription for cannabis oil?Probably a dumb question, but I’m trying tolearn.Bless youJohn Purdell

  2. As you can see by my name, I am your biggest fan, Mary Nell!!! I am so happy for your great progress, and will add you to my prayer list and ask that God continues to help you get better and stronger. Please feel my arms around you every day. Keep that precious smile always.

  3. As we make progress toward returning to Natural healing, I am encouraged by the voices being heard n stories shared, it will forever haunt me that I lost so many to Cancer unnecessarily at Young ages, Barbara Thomas age 54 to Breast Cancer, April 2014, Ed Grob, my Dad owing to Brain tumors in 1991, age 53, and what a Horrible NON dignified end to a Man who’d made every attempt to help Everyone always. A Korean war Navy Veteran, Fire fighter, First aid squad volunteer, Indian Guide leader, brilliant skilled writer contributor to society, best Dad I could have asked for.. Mom 2002 age 63 owing to complications from Electric shock treatments in 1958 for “post partum psychosis following the birth of my elder sister same time Earth shattering family news was nastily delivered via Her Mother in law who, did NOT approve of her and my fathers Union.. Mom was illegitimate and so; raised by her Grandparents as a “late babie”. More likely Post traumatic stress is what occurred but.. the ole idea of women being “unstable” n all that.. I am to this day Horrified that this happened to my Mom.. The bravery to continue with the plan to have and raise a family speaks volumes of her courage determination and tenacity. Among my Many Losses, possibly Most sad to this day and forever is, my 2 yr old Nephew I never got to meet; who died in 1994. The adults responsible for him Having Passed out on prescribed pharmaceuticals left a tub with water in it young Zachery wound up drowning in. I still ache for all concerned in that disaster n KNOW first hand from a LONG searched for spouse Prozaced w/Lithum that became USELESS. The Dangers of these Pharmaceuticals. Forever I will wear MANY scars n regrets over the GREED that has kept Cannabis from US for so long.. NO more questions. It’s time to GROW.. for the well being of ALL.. INDEPENDENCE is a GARDEN. Freedom is a Garden LIBERTY is.. a GARDEN. Enough flagrant violation of our CONSTITUTIONAL rights via propaganda and GREED.. our Children friends and family are more important than some politicians Idea of what ought to be according to their Financed special interests..

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s