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My son went to his CF appt yesterday and his pfts dropped 5-10% (FEV1 75) from his last visit there 6 months ago. Dr changed his pulmozyme from once a day to twice a day. He went to a conference last fall and learned that pulmozyme can be more effective than hypertonic saline. I spoke to his...

I am so sorry you are having to go through all this. My son just had a bronch last month and there was never a mention about things getting stirred up. I would definitely take the pulmonologist's advice over a pt. My son's pulmo recommended it because he has a problem coughing up a good...

I am praying for you and your family. It breaks my heart that you are going through this. Definitely get that book by Lisa Greene that someone else suggested - it has great ideas.

Yes! I applied last year for my son but he was denied because his PFTs were above 70. Thank you Lord for that! But a few weeks ago I received an email from the dr who said they have changed the criteria. They resubmitted the application and we received notification a couple of weeks ago that my...

So happy for those 150 people!

We use Garden of Life Super Food Super Green Formula. It doesn't contain processed soy like the one you are mentioning. We have researched and researched, and found this one to be the most beneficial. Also, I just started reading The Daniel Plan 40 Days to a Healthier Life, and it mentions that...

My son was diagnosed at age 5, and it was definitely fearful and overwhelming. But it was also a relief as well because after that he started receiving the correct treatments. He was misdiagnosed with asthma so he was obviously not taking all the right stuff. It was a blessing to finally...

DS10 has his annual chest x-ray and mucus plugs showed up in his right middle lobe for the 1st time. He has always had hyperinflation, but never mucus plugs. Dr said this was a mild change and suggested extra manual CPT to that area 2x/wk. He also started huffing half way through his vest to see...

I am so sorry you are going through all of this. We did GF for a little bit until we found a med for his Crohn's. Smoothies with frozen fruit, juice, protein powder, flaxseed oil and coconut oil is a great way to get a lot of good fat and protein. Hope you find something that works!

I have been giving DS coconut oil in his smoothies for about a year. I heard it was good for Crohn's and figured it would be good for his CF as well since it is high in fat. DS had his quarterly CF appt yesterday and the dietician asked me if I was giving DS any additional supplements since his...

We got our 50 PSI last year and our setting is at 25 for everything except Pulmozyme which is 30. Pulmozyme's quantity is not as important as the rest. When I get home I will look for the name of the handout that our CF center provided us.

My son is 10 and he still uses the pediatric mask. We sanitize them with the Avent sterilizer as well.

Rodney Yee's AM Yoga for Your Week is great. There are five 20 minute workouts that are geared towards a beginner. We do a different one each time. Love it!

I always email the CF pulmo since she knows him so well. She will refer us to the ped or local CF pulmo (since she is 2hr30m away) if necessary.

DS10 has to go to the nurse's office to get his enzymes. Back when he started in kindergarten the nurse said he probably would always have to come to the office until middle school. Well, as I was volunteering in the office during the month of October, I did not like what I was seeing. I did...

I ordered a 3 month refill for my son's Xopenex (we use mail order), and received the levalbuterol. I totally love the new cost of $20 vs. the $80 we previously paid. It seems to be working the same.

That sounds like a great idea! My son is 10 also. I will email you the info. Thanks so much!

I found out a few years ago that a 2 yo girl with CF lived in the neighborhood next to ours through a newspaper article. I gave the Mom a call and we could not believe 2 children with CF lived so close together! I was wondering what we would do in a few years when she started school. I just...

What is the plunger? I tried to google it but had no luck. Thanks!

We had a few Pari's but they didn't last too long. We then had an Phillips Inspiration Elite (30 psi) that worked fine but wanted the Mobilaire (50 psi) to save time. We set ours at 30 psi for everything but Tobi, which should be 25 psi. Even though the Phillips is a 30 psi there is a huge...