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Sunday, January 16, 2011

CF education night

Phew! I had a bit of a blogging break this weekend because we took Ben up to the snow. We had an absolute blast! Ryan got to snowboard, I got to read more Sookie books ( Smile) and Ben had a blast throwing snowballs. Pictures to come tomorrow.

First, I wanted to talk about the CF education night I went to on Thursday. It was put on by the Sutter Hospital CF clinic. This was the clinic we were originally assigned to but then ended up switching to UCSF when we moved to Santa Rosa. I have some experience with them because Ben was born in Sac and was hospitalized for 20 days due to MI. During this time, the Sutter team oversaw his care.

I have to say, I have heard great things about their NP. I have also heard not-so-good things about their Pulmonologist. This is why we have stuck with UCSF despite this clinic being only 25 minutes away.

However, they put on a great CF education night and it was so wonderful to meet some of the local CF mom’s I’ve come to know on Facebook. I also wanted to share some tips/info I learned while there. A genetic counselor, NP, Pulm doctor, and GI doc all spoke. Please keep in mind, this is the opinion of one CF accredited clinic so take it as you will. There is a lot of info so I’m not going to go into specifics because most CFers/CF caregivers know what I’m talking about. I apologize if it’s a bit random, there was a ton of info given out!

1. Hypertonic Saline. The doctors and nurses who spoke, couldn’t stress enough how important they thought HTS is. In their opinion, everyone should be on it. It hydrates the mucus and makes it easier for CFer’s to cough it up. Even if you or your child don’t sound mucus-y, once they start HTS, they will cough phlegm up. Highly recommend for EVEYBODY!

2. Vitamin D- During the winter months, when kids get less sun, they recommend 2,000 IU daily at the least.

3. Vertex drug trials. There have been “game changing” results in VX-770. This is the drug targeted at the G551D mutation. This drug has had extremely promising results and is the ONLY drug to actually reduce the amount of sweat chloride in CFer’s. Therefore, fixing the underline problem in CF. There have not been as promising results in the VX- 809 study. HOWEVER, it is only in Phase II and many people believe the right combo of the 809 drug and the 770 drug will show just as promising results. Extremely hard to hear but I’m glad to have an update.

4. PPI’s and C. diff/pneumonia. There are some studies that show a correlation between Proton Pump Inhibitor (Prevacid, Prilosec) use and C.diff and pneumonia. PPI’s may have a slight effect of increased community acquired pneumonia or clostridium difficle diarrhea. However, all the doctors agree that the benefits of PPI’s outweigh the risks.

5. RespirTech vest users: I spoke with the RespirTech rep and he was very impressed with the fact that Ben is at 100% pressure on his vest. He recommends that every child be at 100%. You can slowly work up to it or just jump up, depending on your child. He says 100% is absolute best for adults and kids. They also now offer vests in pink and blue, you just need to call and ask them to ship you one.

6. If your clinic doesn’t start testing for Cystic Fibrosis related diabetes by the age of 10, you should ask to start. It should be done annually.

7. Pseudomonas. The Pulmonology doctor recommends that even CFer’s with colonized pseudomonas be treated with an on/off cycle of TOBI for the rest of their lives. He also recommends a Cayston/TOBI/Cayston/TOBI…. sequence to see if it helps in clearing pseudo.

8. Azithromycin is recommended in kids 6 years and up to help with anti-inflammatory. It can also help increase lung function. Ibuprofen can also help however, the levels need to be monitored. You shouldn’t just start taking Ibuprofen everyday. Your clinic will help you figure out the right levels for each person.

As I said before, please talk to your clinic before you change your/your childs regime. Please feel free to email me if you have any questions.


  1. Interesting about asking about the CFRD by 10 years old. I'll have to keep that in the back of my mind. We might also be starting the HTS when he gets hospitalized for his GTube. We shall see!

  2. This is great info! I was most interested to hear about the PPI and C.Diff connection (something I just learned) and the PPI and pneumonia connection. My CF doc didn't seem too worried when I requested Bennett go off of a PPI. I am surprised that this doc wasn't worried when it comes to pneumonia. Why do you think he preferred the PPI so much?

  3. Totally agree about the HTS - we love it! High fives to Ben and Asher for jumping up to the 100%! :)

  4. My goodness Margaux....that you can keep all that straight in your head! I am so impressed by you.....and was so this weekend too. Manny is so lucky to have you as a mom and I am lucky to have you as a cousin/friend!
    :) Darcy

  5. Thanks for sharing hun!

    Some really interesting points there that I will definately be discussing with Sophie's team :)



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