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Anyone on here have kiddos that use it? I read about it in one of the other forums. I would love to know more about the results and what you are seeing if you use it. Thanks!

Hi All, Please forgive my frequent posting lately. My 8yr old just came home from the hospital this afternoon. Here is a timeline of events up to this point. PFTs have slowly declined over the last few months. Culture shows an abundance of staph and she is put on Augmentin. Does nothing and...

Someone in one of my other threads (sorry for hogging) mentioned changing neb cups for different neb meds. I had no idea. My daughter is 8 and has been using the same neb cup for two meds for years. I also only change the cup every 6 months. Does this sound right?

Hi All, My daughter is preparing to go to the hospital next week for a PICC line and IV antibiotics. She is 8 and has never cultures pseudomonas. However, her CT scan shows some infection and blockage deep down in her lungs. While she is getting the PICC she will have a bronchioscope and they...

Hi All, My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower...

Hi All, I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I...

Hi All, I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want...

Hello all. I currently live in MA and am considering a move to NC. I am wondering how the weather down there impacts little ones with CF. My DD is six and doing great. Also, I know both Duke and UNC have CF centers. I would appreciate hearing thoughts on both. If we move I will be working...

My 5yr old loves banana bread. I usually use a mix and make one or two loafs a weeks. She takes it to school for snack in the morning and will often eat what is left for the afternoon snack period too. It is a box mix and calls for eggs and oil and water. Is there anything I can do add some...

<br>Hello all. I am looking for thoughts and opinions here. My daughter has chest pt three times a week with a PT from a local agency that specializes in cf. This woman lives in my town and has been working with my daughter for two years and she does a good job. My problem is she is inflexible...

I am sure this has been on here a ton but I am hoping y'all will forgive me for posting again.  I need suggestions on how to get my kiddo to gain weight.  She loves anything with syrup but is not into shakes or fast food.  In fact sh hardly wants to eat at all.  We are probably going on an app...

My four year old daughter has CF.  I have done two IVF/PGD cycles in hopes of having another one without passing on the disease.  Both cycles failed.  I am curious what others did to have more children?  Did you just go for it naturally and what will be will be?  Did anyone consider using a...

How long after Pulmozyme do you do chest PT? I thought we were supposed to wait about 90 minutes to let the medicine loosen everything up and then do chest pt. Yesterday at clinic her doc mentioned only waiting about half an hour. Thanks, Karen

Hi Ladies, We are about to do IVF/PGD. I am just wondering if others have tried it and had any success or not. I am just looking to here about others who have gone through this process. Karen

Hi All, We are considering a move to NC from Boston. I would like to be within an hour of Duke and their CF center but I know nothing of the towns in that area. We would like something on the smaller side but still close to shopping and activities. Hubby would love to within an hour of the...

Sorry about all my questions tonight but they keep popping up as I go. How do you clean your nebs? I read on the CFF that they can be boiled. Does this include the soft parts like the mask and the tubing? Any other suggestions are greatly appreciated. Thanks, Karen

I forgot to ask in my other post. How long does a neb treatment take with pulmozyme? Our doc said 15mins but it seemed like there was nothing left after only 8-10 minutes. Your thoughts are appreciated. Thanks, Karen

Hi All, My two and a half year old is about to start pulmozyme tonight. This is our first experience with nebs and I have never used one before. The guy who dropped off the machine barely gave me an explanation so if you have quick instructions I would appreciate it. I would love any tips on...

For those participating in clinical trials....what are you/were you taking and how has it worked for you? I am trying to keep myself updated on what is happening out there in terms of meds and what is in the works. I have heard really great things about Denufosol and VX770.

If you live in the New England area where do you go for clinic and are you happy with the care?