Sunday, September 13, 2015

Charlottes Web

There is no specific time during the year that you can decide it's time for a change.  I see everyday that friends on Facebook are challenging themselves to live healthier, to become better in various ways.  For those of us who believe in the Jewish faith, and for some other religious groups, tonight marks the beginning of the celebration of a new year.  We are entering into the Hebrew year 5776 and similar to the traditional January 1st New Year, we have decided it is an auspicious time for us to try something new for Sonzee.

It is a hot topic these days, the discussion on medical marijuana and canabidol oils. There are so many unknowns; similar to our current more "traditional" approach to treating Sonya's seizures.  We have been told by some doctors that the outcomes of MM and/or CBD oil are "unknown" and we should stick to the "tried and true".  Clearly these doctors don't have a child with a life altering diagnosis, because if they did I can only imagine they too would give anything a try at least once.

We know the long list of side effects that come with her current medications; they are attached to the drugs in a folded over 8 x 10 paper pamphlet stapled to the bag, and in size 12-14 font is a list in bold writing "common" and "rare", always followed with "contact your provider if...".  I can thank the pharmaceutical companies who have conducted their trials on these medications, because hey afforded me a list of these "potential side effects".  From our experience, I cannot offer my compete gratitude as they have not yet proven themselves to be "tried and true".  Sonya still experiences daily seizures, and odds are she always will, no matter the cocktail she tries.  

Charlottes Web Hemp Oil contains less then 0.3% THC.  It's long term side effects while unknown due to its relatively new existence and lack of long term scientific data, realistically could not be worse then the pages that are attached to her pharmaceutical medications.  Some children have tried medical marijuana and or hemp oils and have been unsuccessful with achieving a decrease in seizure activity.  In some of those children, despite the lack of seizure control, they exhibit a better quality of life.  That's a win in my book.  Other CDKL5 sisters of hers swear by their chosen brands, and their families are extremely vocal in the positive changes they have experienced.  Thanking the oils for "bringing them their daughter".

It is with blessings from her neurologist and gratitude to Hashem and the Stanley brothers for providing a more viable natural medicinal option, that we say thank you and may this year be better than the last.

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