Wednesday, April 17, 2024

Marijuana Extract Extended The Life Of This Girl Suffering From Zellweger Syndrome

Madeline, or Maddie, as most people know her, is four years old and suffers from a terminal genetic disease called Zellweger Syndrome. There is no cure or course of treatment and most kids with this devastating disease do not survive past their first year of life. Here is how whole-plant cannabis oil helped her.

Maddie is deaf, blind and completely dependent on a feeding tube. She also has osteoporosis, kidney stones, liver dysfunction, coagulopathy, anemia, adrenal insufficiency, low muscle tone, and in January of 2015 developed seizures.

The seizures immediately became life threatening; they were painful, daily hour-long events where she would stop breathing and require CPR. Within eight weeks of developing the seizures, she was on placed on 26 pharmaceuticals, lost what little motor skills she had gained, and was admitted into hospice with the expectation her life would end soon.

I could not accept that I would lose my baby, so during the weeks leading up to what we thought we be her final days, I began researching and found information on full-extract cannabis oil.

On the night we took her home, on what was supposed to be our last night with our daughter, we got her authorized to use cannabis. All we hoped was that the cannabis would keep her comfortable in her final moments. Instead Maddie began breathing on her own and her seizures began to reduce in frequency and duration.  Soon she was eight days seizure free.

Then we discovered her right kidney was full of stones and quickly realized Maddie was opiate sensitive (so much so she had an event requiring an opiate reversal and urgent intubation). A medicated cannabis cream on her chest helped get that tube out.

More About Whole-Plant Cannabis Oil Or FECO

Maddie uses a highly concentrated form of cannabis called FECO or full extract cannabis oil. Essentially you are using as much of the plants medicinal properties as possible.  Currently, Maddie takes 90mg. of CBD and 40mg. of THC every day. We tell people that CBD kept Maddie alive but THC-A brought her back to life.

Recently we have begun trying to rescue her from seizures with cannabis. For a couple days a high CBD, 18:1 spray that worked half the time. We then tried a THC-A isolate. One drop in her mouth, which by itself is unusual since she does not take anything by mouth, was tolerated extremely well, and two out of three seizures are stopped.

She has gone 15 days with no seizures and currently has not had a benzodiazepine (traditional rescue medication) in 22 days. She has been weaned off all but four pharmaceuticals, is off hospice, began relearning skills such as sign language, babbling, kicking her legs and is generally enjoying life again.

Cannabis is providing Maddie with a quality of life we never thought possible. Even more we are now effectively palliating the symptoms of a disease for which there is no course of treatment.


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