First Cayston Experience
Written by Janna
Saturday, 28 January 2012 11:43
On Thursday, Julia and I went up to Primary Children’s Medical Center for Julia’s first ever Cayston experience.
Rewind just a bit…ever since Julia contracted pseudomonas, a harmful bacteria damaging her lungs, she has been on a medicine called TOBI. TOBI is an inhaled antibiotic that treats pseudomonas and keeps it under control. The only down side to TOBI is that it takes a loooong time to inhale, 30 minutes to be exact, which adds an additional hour onto Julia’s already hectic treatment schedule. Cayston does the same thing as TOBI. It is an inhaled antibiotic that treats pseudomonas just like TOBI. The truly fantastic thing about Cayston is…it only takes two minutes to neb. I originally said it took three minutes, but I lied. After timing it we found that it was two minutes exactly. TWO MINUTES! I am still in shock at how fast it nebs. It is A-MAZ-ING! Even Julia is surprised at how fast it goes.
Julia is the youngest patient at the Intermountain Cystic Fibrosis center to be on Cayston. She is one amazing four-year-old! I am so excited for her as we are taking back an hour of our day and loving every extra minute of it! Just in case you don’t believe me, we made a little video of Julia inhaling Cayston. It makes her cough a little, but she puts up with it for two minutes. She is such a trooper.
Julia with the Peanuts gang after her first Cayston experience at PCMC.
Altera nebulizer system...it can be battery operated and doesn't make a sound besides a beep.
The Altera is so small...it fits in my hand.
Cayston is different from TOBI in that is has to be mixed. It also has to be administered three times a day as opposed to two. Cost for a 28 day supply...$6019.69. And I thought there couldn't be a medicine more expensive than TOBI.
We are so excited about this new change to Julia’s treatments. We’ll keep you posted on how things go, but so far, we couldn’t be happier.
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