Ayrie, just had his 5th surgery this week, all over a span of less than seven months.  I have read endlessly (60+ hours at this point) about RRP and treatment alternatives and decided on the artemisnin/artesunate combination.  I talked to lots of people, including our surgeon, our pediatrician, the International RRP organization,  my father (a nurse), my friend (an epidemiologist), my sister-in-law (just attended a naturopath confernece) and anyone else who would listen!  I created a dosing schedule (3 times a day, 7mg/kg of the artemisinin and 3mg/kg of the artesunate).  I chose three times a day because there is just no way I can ask the day care providers to administer this medicine and I can’t stop working to be available for a mid-morning dose.

Okay.  So I had a well-thought out and researched plan, as scary as it may be.  But the trouble started immediately.  Ayrie has to take two artemisinin and one artesunate pills each day, spread over three doses.  That means that I have to open the tiny capsules and divide up minute amounts of powder.

And the powder tastes AWFUL!!  I have mixed it with ice cream, pudding, juice, gatorade, brown sugar, yogurt, maple syrup, jelly and more.  Absolutely nothing masks the taste of this medicine.  It has bitter after taste that lingers and only seems to get stronger.  At times the taste even triggers his gag reflex.

So after almost three days, he’s taken several partial doses.  It’s clearly not working.  I’m considering dividing up the powder into capsules that I make myself, and teaching how to swallow capsules.  But he sure can be stubborn.  We battled it out for hours this afternoon before i realized that it was hopeless.

We are both frustrated, and I hope we can come up with a workable solution!!