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I need new nebs for my eflow and don't know how to order them. Do I have to call the CFF directly? Mail my prescription? Thanks for you direction!:D

My son, 8, had pseudomonas in Feb. and we haven't seen it since. Tobi and Cipro took care of it. Just do your best and be thankful we have medicines to help us. (PILLS)

Hi! I am trying to decide what to buy to help augment our CPT. Any tips or advice is greatly appreciated. I saw the G5 Flimm-Fighter Percussor and the G5 Vibracare Percussor and I know there are other companies, etc. What do you all recommend? The vest is just way beyond my budget, but I'd...

My kids had staph and got antibiotics. They are "clean" now. Wouldn't those bugs cause inflammation in the lungs? I am in Israel, and I think the European approach is more aggressive towards these things. Good luck!

I use it with my kids and it is nice to have faster treatment times. It does have drawbacks; aside from being crazy expensive, the aerosol head is VERY delicate and we have been having trouble maintaining the speed. As it gets clogged up, the time takes longer until it is the same as...

Maybe try contacting Jerry Cahill. He is a real inspirations to thousands. he just had a transplant this past spring. https://www.facebook.com/jerry.cahill1A

I understand your nervousness. I have 3 kids newly diagnosed with CF and when I started reading about it, I learned about CFTR Related Metabolic Syndrome. I asked the doctor and he ordered a sweat test for me. I got 74 (which is normally positive) but with the follow up, it was really false. I...

CFTR is the gene/protein. I don't think there is such a thing as a "CFTR diagnosis". Did you do a sweat test?

Hi! I mentioned to our CF doctor that my son is hoping to run in a marathon and he said it isn't healthy. It is harmful to the joints, there are many injuries and how the body metabolizes glucose, etc after a certain amount of time changes... I am very surprised. I thought it is healthy...

I think the "1" refers to the volume of air expelled in the first second.

Can you call someone from the clinic who knows you and get their advice? There can be an infection without fever which is how my 16 year old got diagnosed. She was coughing for a year until we got the right treatment. She cultured Staff and now she's clear after antibiotics She barely coughs...

Eyes & CF This is a link to an amazing resource...http://www.cfmedicine.com/history/topics/eyes.htm I learned tons here. My CF doctor also said he didn't know about eye issues and Dr. Littlewood has a whole section about eyes! I hope you find out what the problem is, or better yet, it just...

I just saw this today, and it is really inspiring...http://www.youtube.com/watch?v=ztccRF91i1Y He flashes his incisions from the surgery. I read one article that said the surgery went much easier because he was in such good shape. Look into Jerry Cahill "(Follow Jerry through the CF Podcasts...

Everyone here has excellent answers. You and your daughter deserve better! (This is worth reading: http://www.newyorker.com/archive/2004/12/06/041206fa_fact) I just wanted to add that my kids are pancreatic sufficient and weight gain is NOT an issue like it is for people with insufficiency...

It has been a while since you posted anything. How is your daughter?

WOW!! Thanks so much! This has been incredibly helpful. I hope you don't mind, I shared a lot of this info with the Israeli forum. They are starving for information since most of the members don't really know English. The doctors just gave a whole presentation for the parents about Ataluren last...

I found this site and tried downloading their link for a PC version of their game. It doesn't work. So, I am wondering if anyone has or could try using their iPhone, IPad version and maybe let me know if it is good. If it is, then I would invest in the appropriate device. Thanks so much!<img...

Hi. I am also not in the US (in Israel). The doctors would ONLY recommend the e flow when I asked about all the hi tech alternatives. (Now, AFTER I bought the Aeroneb Go for my adult son, they asked me for the contact info in Israel. They want to do some research with it... It is a fraction of...

Hi! I have the same thing with my PFT's and so far I was checked for asthma (negative) and I keep bothering the doctors when I go for my kids' appointments. :-) I did get 74 on the sweat test; their problem is that I don't have CF per se (ie. repeat infections, etc.) My VERY ATHLETIC CF son...

I use a bottle sterilizer (microwave version) and I love it. My sterilizer has everything sterile in 8 minutes. I almost melted all the nebulizers when I forgot them boiling on the gas. That pushed me to invest in this system. I got a "Tommie Tippee" version. It was cheaper than "Avent". I saw...