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We need something to keep her pseudo under control because the tobi's not cutting it. We really want to get her on cayston but I got a feeling they're not going to be meeting their demand anytime soon. I'm thinking about getting her checked in for another round of IVs or maybe get them to cycle...

Sweet. I'm gonna talk to my kid's doctor about it on Tuesday. The way she is off tobi right now isn't really sustainable and I don't think she can go to school like this.

Sweet. I'm gonna talk to my kid's doctor about it on Tuesday. The way she is off tobi right now isn't really sustainable and I don't think she can go to school like this.

Talk to your older daughter's cf doctor about it at her next appointment. Contrary to what people may tell you, you can't just call an approved cf center and make an appointment for someone without a referral.

Talk to your older daughter's cf doctor about it at her next appointment. Contrary to what people may tell you, you can't just call an approved cf center and make an appointment for someone without a referral.

My daughter tends to alternate between pseudo and aspergillus. When she's off tobi the pseudo takes over and when she goes back on the aspergillus dominates her lungs. So far they've done a pretty good job of keeping each others numbers low and our doctor has advised us not to treat the fungus...

My daughter tends to alternate between pseudo and aspergillus. When she's off tobi the pseudo takes over and when she goes back on the aspergillus dominates her lungs. So far they've done a pretty good job of keeping each others numbers low and our doctor has advised us not to treat the fungus...

I think you need a referall. Thats usually the way it is for specialists. Alot of regular physicians and x-ray technicians saw my daughters x-ray from when she had her pneumonia and didn't see anything wrong. The pulmonologists took one look at it and saw bronchiectasis (permanent lung damage)...

I think you need a referall. Thats usually the way it is for specialists. Alot of regular physicians and x-ray technicians saw my daughters x-ray from when she had her pneumonia and didn't see anything wrong. The pulmonologists took one look at it and saw bronchiectasis (permanent lung damage)...

I hope that this doctor isn't your cf specialist or I feel sorry for you. I was asking my regular doctor today if some of my stomach problems could be from my pancreas since my daughter has cystic fibrosis. No, she told me. If you had cf then we'd know by now. Oh boy!!

I hope that this doctor isn't your cf specialist or I feel sorry for you. I was asking my regular doctor today if some of my stomach problems could be from my pancreas since my daughter has cystic fibrosis. No, she told me. If you had cf then we'd know by now. Oh boy!!

My family did the same thing when kalydeco came out. They kept calling to say that a cure for cystic fibrosis had been found. Like they would know something about it that I didn't. To answer your question, kalydeco was not approved for your daughters mutations as its only approved right now for...

My family did the same thing when kalydeco came out. They kept calling to say that a cure for cystic fibrosis had been found. Like they would know something about it that I didn't. To answer your question, kalydeco was not approved for your daughters mutations as its only approved right now for...

They're not supposed to speak publically about it.

They're not supposed to speak publically about it.

This is going to be a huge step in the screening of future cf drugs similar to kalydeco. They grew lung tissue containing the G551D gene and showed that kalydeco was effective at correcting the genetic dysfunction. They also know that they can grow DF508 tissue as well. This will speed up the...

This is going to be a huge step in the screening of future cf drugs similar to kalydeco. They grew lung tissue containing the G551D gene and showed that kalydeco was effective at correcting the genetic dysfunction. They also know that they can grow DF508 tissue as well. This will speed up the...

saveferris: I'm going to whole foods tomorrow to pick up the stuff for that smoothie. I told her about it and she sounds pretty excited. Should I just follow the recipe on your blog or do you have other suggestions for ingredients? Does she have to take enzymes with it to absorb the nutrients?

saveferris: I'm going to whole foods tomorrow to pick up the stuff for that smoothie. I told her about it and she sounds pretty excited. Should I just follow the recipe on your blog or do you have other suggestions for ingredients? Does she have to take enzymes with it to absorb the nutrients?

sweetdeal: Can you tell me your doctor's reasoning to putting you on continuous tobi. Is resistance not as big of a problem with inhaled antibiotics as with IVs?