Sunday, October 4, 2015

Charlotte's Web Update #1

The above words I would consider my personal motto since I was a teenager (Thank you Jonathan Larson).  I do my best to make decisions after thorough consideration of all the pros and cons I can think of.  While I have been known to make decisions in haste, you can be sure I have calculated all the risks and benefits to ensure I do not have any doubts or regrets.  

I was hesitant when it came time to "pull the trigger" on the much talked about and debated topic of medical cannabinoid oil.  This probably makes my opinion a bit more unbiased than someone who is singing the oils praises since I would place myself in the cautiously optimistic category.  To be honest, I still am a skeptic.  

Three weeks ago today we began on our journey of adding in Charlotte's Web Hemp Oil.  We did not necessarily do the most exhaustive research regarding the brand; however, we went with one of the more popular ones who have proven to be more reliable in recent audits and more readily available in Arizona. We know there are other options out there, and in the future we may give those a try, but for now, we will stick with this decision.

We started with a low dose of .25mg/lb since Sonzee is only 14.9lbs.  She has been getting about 3.43mg of cbd daily.  We initially started with 3 doses throughout the day, but that was honestly not working out the best for her or me.  Too many naps disrupted, too little sleep and alarms for me, and so we decided to change to 2 doses.  

I have to admit that over the past couple of weeks I have had my doubts on whether the oil has been worth all of the added "annoyances" it has been bringing.  Feeling defeated because this was our hail mary and "last resort" option from pharmaceuticals has had me on edge.  I doubted whether we were using the correct brand.  Did we make the right call for the Sonzee bear?  Part of my initial hesitation with starting the oil was because I WAS expecting a type of miracle to occur.  There are so many of her CDKL5 sisters who have experienced dramatic results, going from 9 daily seizures to 0.  I would not be truthful if I didn't admit I have been a bit bummed that Sonya who has an average of one seizure every 24-36 hours did not stop having them all together.  However, in reply to those of you who have inquired recently about the results here is the information for you to make your own judgements.

Seizure Activity:
September 13:  Sonya began .2ml three times a day of CWHO
At the end of the week (Sunday-Saturday) September 19: Sonya had 7 seizures
At the end of the week (Sunday-Saturday) September 26: Sonya had 7 seizures
At the end of the week (Sunday-Saturday) October 3: Sonya had 5 seizures

What we have noticed behaviorally:
Sonya giggles for the first time; Sonya also begins to sleep from 9-4am
Sonya has been more alert. 
Sonya has been more socially interactive.
Sonya has been more smiley.

So is it working?  For me, the jury is still out...but I am definitely encouraged!

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