Ben is growing Pseudomonas again. We are starting a new inhaled antibiotic, Cayston on Friday. This will be done three times a day for two months. Our Pulmozyme order should arrive today. This will be done once in the morning forever. The doctors are hopeful that the Cayston will work. The pseudo isn’t mucoid or colonized which is good however, we are heartbroken.
Wednesday, November 3, 2010
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Hi Margaux, I am so so sorry to hear that Ben is culturing PA again! Great to hear that it is non-mucoid and not colonzied, lets hope that the Cayston kicks butt! Hang in there, I know how devastated you must be, but remember you are doing a great job and you could do nothing more! Now get on and enjoy that new house! I am always around if you need to vent! Natalie xx
ReplyDeleteHiya
ReplyDeleteI'm so sorry to hear of the news we all dread. It's great you get to try cayston with Ben though, we aren't so fortunate here yet! It has very good reports and hopefully will do the job for him.
Sophie managed to clear her pseudo growth and was free of it for over 13 months before picking it up again. We were just unlucky but it is possible to get it gone.
Re- the garlic, apparantly the garlic supplement has some pseudo fighting properties so I have been told but nothing proven conclusively. Since starting, soph has already shifted a cold in 2 days. Coincidence? Who knows but if you want anymore details give me a shout.
I will send you lots of positive vibes that you clear this horrible bug for good.
Take care and hugs to you all.
xxx
Oh Margaux, you and Ryan (and Ben!) are so strong! We are praying for you and that the antibiotics work well!
ReplyDeleteI am so sorry Margaux! Many prayers that sweet Ben kicks this super fast! CF needs to take a back seat!!! ((((HUGS)))) Momma, this is just sucky.
ReplyDeleteHi! I have been following you guys for a while...I am a pharmacy student that spent last month at a CF clinic and loved every minute of it! so sorry to hear that Ben is growing Pseudomonas, I hope the Cayston wipes it out completely. The pulmozyme/cayston combo has been a God-send for many CF'ers~thinking of you guys and keep us posted!
ReplyDeletePrayers..Ben is a fighter, the PA doesn't stand a chance.
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