​Medication Management Made Simple

​Hello OAA families.  My name is Josephine and my 25 y.o. son Michael has CblC.  Since birth Michael has been taking Cystadane (betaine anhydrous) oral powder.  I would mix it in juice but he would have a difficult time drinking all the amount due to bitter taste.  I found a capsule filler on Amazon that allows us to fill empty gel capsules. It's a great do-it-yourself gadget that has helped us with daily medication management and reduced the stress of taking Cystadane.  Some of you may have already seen or may already have a capsule filler.  If you don't and your child does well with swallowing pills, then I highly recommend you try this.  Michael takes 5 scoops of Cystadane 3x per day.  This is the equivalent of 26 pills daily.  I KNOW, this sounds like a lot, and it is, but we break it up throughout the day. We use double "00" gelatin capsules.  He takes 8 in the morning, 6 at lunch, 6 at 4:00pm and 6 in the evening.  The Cap-M-Quik allows me to make 50 pills at a time and I usually make enough in one sitting to last the week.  We recently went to NIH to visit Mike's medical team.  They thought this was worthy of sharing with other OAA families. Mike's homocysteine levels have never looked better and the team felt that maybe part of the reason was the way he is taking the Cystadane.  Taking it throughout the day may be keeping it in his bloodstream longer or more consistently.  Just a thought, but it made sense to all of us.
 
Thanks for listening to our little success story!!
 
Warmest regards for a healthy holiday season!
 
From the Winter 2019 OAA Newsletter

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