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In order for a drug to be developed and go through FDA approval it has to show some significant benefit and activity. Those with the G551 gene have been taking Kalydeco have shown some real benefit. In the research there was some benefit with just DF508 in the range of 5-8%, this is not enough...

In order for a drug to be developed and go through FDA approval it has to show some significant benefit and activity. Those with the G551 gene have been taking Kalydeco have shown some real benefit. In the research there was some benefit with just DF508 in the range of 5-8%, this is not enough...

I am adding this to my mix. I blend and admin via G-tube bolus. <a href="messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube</a>

I am adding this to my mix. I blend and admin via G-tube bolus. <a href="messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube</a>

CF and Nutrition We are suffering from a perfect storm of health problems 1. Metabolic syndrome - Long term blood sugars, not controlled properly in the body, taxes the system to where most Cf's adults get clinical CFRD. This can be avoided, irrespective of what clinical outlines say. If...

CF and Nutrition We are suffering from a perfect storm of health problems 1. Metabolic syndrome - Long term blood sugars, not controlled properly in the body, taxes the system to where most Cf's adults get clinical CFRD. This can be avoided, irrespective of what clinical outlines say. If...

I have had several G-tubes placed, I am 42 and have them for over 20 years. Right now I have a Bard G-tube which is a flat silicone flap( looks like something that belongs on an inflatable raft). I use an Enteralite Infinity pump - which is portable and not gravity fed. Much easier to move...

I have had several G-tubes placed, I am 42 and have them for over 20 years. Right now I have a Bard G-tube which is a flat silicone flap( looks like something that belongs on an inflatable raft). I use an Enteralite Infinity pump - which is portable and not gravity fed. Much easier to move...

Any one know of double D508's taking it? Either off lable or during the trial. When looking at the research it shows a slight activity of 5-8% with double DF508, not enough to get a new drug through but could help us out?

Any one know of double D508's taking it? Either off lable or during the trial. When looking at the research it shows a slight activity of 5-8% with double DF508, not enough to get a new drug through but could help us out?

I have been in the same situation. I would dred getting a PICC line and it would actually keep me from getting admitted, adding one more complexity to the mix. It would take hours of trying to get a line in me, the PIIC line nurse giving up sometimes. 15 years and 40 plus PICC lines later I did...

I have been in the same situation. I would dred getting a PICC line and it would actually keep me from getting admitted, adding one more complexity to the mix. It would take hours of trying to get a line in me, the PIIC line nurse giving up sometimes. 15 years and 40 plus PICC lines later I did...

Yeah the blood sugar is a good thing to look at. Also it could be inflammation and obviously what bugs are there. The big thing for me is nutritional issues and food allergies. We are sensitive to so many foods that it can really affect your health. I would look at gluten and dairy as a culprit.

Yeah the blood sugar is a good thing to look at. Also it could be inflammation and obviously what bugs are there. The big thing for me is nutritional issues and food allergies. We are sensitive to so many foods that it can really affect your health. I would look at gluten and dairy as a culprit.

I wonder if they will off label it for use with DDf08? It did show some improvement just not enough to get a drug passed through FDA it did have a 6-8% benefit, any thoguths

I wonder if they will off label it for use with DDf08? It did show some improvement just not enough to get a drug passed through FDA it did have a 6-8% benefit, any thoguths

Here is my two cents. These drinks offer nothing but empty dead nutrition calories not to mention just sweetened milk with synthetic nutrients. If this is all a kid will eat that is one thing but you need nutrition not just calories. Dairy is not good for CF's because makes too much mucus. High...

Here is my two cents. These drinks offer nothing but empty dead nutrition calories not to mention just sweetened milk with synthetic nutrients. If this is all a kid will eat that is one thing but you need nutrition not just calories. Dairy is not good for CF's because makes too much mucus. High...

<br>I rinse with hydrogen peroxide. Make sure you do not have any sores or open gums because it will burn and make sure you do the h202 before you brush otherwise you can get open gums etc. YOu can cut the h202 with water to lessen the effect.I would also look nutritionally, vitamin D...

<br>I rinse with hydrogen peroxide. Make sure you do not have any sores or open gums because it will burn and make sure you do the h202 before you brush otherwise you can get open gums etc. YOu can cut the h202 with water to lessen the effect.I would also look nutritionally, vitamin D...