Ben’s Cayston (inhaled antibiotic) arrived today, courtesy of the UPS man. As usual, there were mixed emotions. Wanting to hug the man then slug him just like with the arrivals of Tobramycin. Only this time, the medicine was in a HUGE box and I quickly came to learn that Cayston was a bit more complicated then Tobramycin.
It took over two weeks for us to finally get the prescription due to insurance. No insurance is going to approve a $5,000 medicine laying down and they needed prior authorization from Dr. N before they would approve it. Our NP was out of town last week so it took longer then expected but we welcomed a small break.
Cayston is a new inhaled antibiotic only an the market about a year. While this may lead some parents to hold off on it’s use in such young children, I am more worried about the pseudomonas sitting in his lungs. Since the drug is so new, I don’t have any experience with it and neither do most of my CF mom’s.
The bad part is that Cayston is administered three times a day. That’s one dose out of our usual routine of two so that will take getting used to. Luckily, it’s given through the Altera nebulizer which is super quick. Each dose is around 2 minutes long. Not too bad.
Cayston comes in a huge box that needs to be refrigerated so I had to make room on one of ourselves for it. Each dosage comes in two parts, an ample with sodium chloride and a vial with powered stuff at the bottom. I have to mix a vial and ample together then put in the nebulizer.
Luckily, the box is very organized so I can easily keep track of what does I have given.
I’m not sure what the over all “plan” is yet but am talking to our NP and Dr. N about it. I know they’ll take my opinion into consideration and I’m hoping to do two straight months of Cayston, then culture Ben and then start on/off months until we get three free cultures. There is no talk yet of IV’s again and am I okay with it. I have heard nothing but great things about Cayston and will continue to keep you updated as I know some CF moms are waiting to hear how we like it.
As usual, my little man is being a stud about starting a new medicine. I am so thankful for his amazing attitude, it makes life so much easier.
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Wow, keep us updated on Cayston. We had clinic today and I asked about Cayston. Madeline's culture comes back next week. Interesting in learning about your thoughts on Cayston. I am loosing faith in TOBI! :( Best of luck! Ben looks like a trooper!
ReplyDeleteWow - thanks for the play-by-play on treating Ben and how Cayston works. It helps SO much to know how all of this medicine works since this is likely coming down the pipeline for us one day. Thanks for being so brave to tackle this!
ReplyDeleteTwo of my local CF moms both have been using Cayston for their 6 year olds with CF. TOBI was just not working too well for their PA. They've had a lot of success with it! The PA is not totally gone but again, these boys have had it for 5 years as opposed to Ben. But it seems to keep the PA in check..Best of luck!
ReplyDeleteI'm glad the Cayston finally got there and that Ben is taking it in stride! He is such a good boy! Keep us posted and let us know what your NP says about your plan. Praying for all of you. <3
ReplyDeleteThinking about you. My clinic won't even consider Cayston for Nathan at his age, but we are trying a new more aggressive (and easier to understand) doctor at a different clinic this wednesday. Let me know how it goes for Ben.
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