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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!

Thanks for the responses. They haven't discussed removing parts of her lungs. My imagination is running wild. We will definitely be increasing her vest treatments along with some additional cardio. When we really look at her exercise level we realized she isn't as active as we thought. It...

Hi Lexi, I just tried to send you a message. Please let me know if you received it. Good luck with your decision.

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?

RebJane-Thank you for the reply. I really love our CF team. You post makes me feel so much better. I kind of had the impression that once pseudo arrives it is hard to get rid of and pretty much always comes back. At least I know we can go a few years without seeing it again. If others are...

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...

She doesn't do it on a regular basis but I think we will start. We do have some so I think we need to add it in. If you do Pulmozyme how long do you wait after it finishes in the neb to start the vest. I was told to wait an hour but that seems like a long time.

She does albuterol to open things up and then does hypertonic to thin the mucus. After that it is vest for 30 minutes. I am thinking she might need to do more cardio exercise.

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...

My daughter had to have her eyes checked prior to the start of the trial. She couldn't just go to an eye doctor. It had to be an MD who specializes in eyes. The doctor found a spot on her eye so she was seen by a specialist who dilated her eyes and did an ultra sound on her eye. He said she...

Hi All, Sorry I haven't responded to my own thread. I was away for a few days. My daughter is a DDF508 and is in the 6-11 trial and has been on the meds since April. We know for sure she is on the meds so there is no placebo effect here. We won't know the results until October when the trial...

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...

My daughter does Albuterol in the neb prior to doing HTS. She is a bit young for the inhaler so she doesn't really have a choice. It takes her about 12 minutes to the Albuterol. Doctor said it would really open the airways and allow the HTS to penetrate deeper into her lungs. Not sure how...

Could these oils be used to prevent infection of psuedonomas or MRSA? My daughter is 7 and has never cultured either but I will do what I can to prevent it. She did have her first hospital admission last year for a week and was on IV antibiotics. She is doing well so far this year but we will...

Hi there. I just read your thread and wanted to suggest Childrens Hospital. When my daughter was diagnosed we started at Childrens and had a horrible experience. Our next stop was Mass General with Dr. Hank Dorkin. He is absolutely fantastic and so is his NP Monica. I mean FANTASTIC. He...

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...

These recipes are great. Thanks! One question...what can I use instead of the low fat yogurt to add calories? Would cream cheese work? This is for the chocolate banana bread.

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...