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So for those of you who have been on Symdeko, Orkambi, or Kalydeco, have you been able to reduce any of your neb treatments? My 15yo son just started Symdeko in August. Thank you for any info!

Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med.

My son went to his CF appt yesterday and his pfts dropped 5-10% (FEV1 75) from his last visit there 6 months ago. Dr changed his pulmozyme from once a day to twice a day. He went to a conference last fall and learned that pulmozyme can be more effective than hypertonic saline. I spoke to his...

DS10 has his annual chest x-ray and mucus plugs showed up in his right middle lobe for the 1st time. He has always had hyperinflation, but never mucus plugs. Dr said this was a mild change and suggested extra manual CPT to that area 2x/wk. He also started huffing half way through his vest to see...

I have been giving DS coconut oil in his smoothies for about a year. I heard it was good for Crohn's and figured it would be good for his CF as well since it is high in fat. DS had his quarterly CF appt yesterday and the dietician asked me if I was giving DS any additional supplements since his...

DS10 has to go to the nurse's office to get his enzymes. Back when he started in kindergarten the nurse said he probably would always have to come to the office until middle school. Well, as I was volunteering in the office during the month of October, I did not like what I was seeing. I did...

Of course the first thing that pops out of my mouth is well, you are normal to me. Well, that didn't help at all! He said Mom, I am not normal! Then I thought I should say well, God makes us all different. But I don't want him to be mad at God! He is very compliant with all his meds but his...

How does everyone keep up with how old a certain nebulizer cup is? I used to mark my son's cups with a sharpie but the ink fades, and I must admit I have been a little lazy about trying to keep up with the dates! He nebs Xopenex, Saline, Pulmozyme and Tobi when needed so he has a lot of cups...

DS9 had his quarterly CF appt last week and the dr switched him from his ventolin inhaler to nebulized xopenex because he was wheezing, and his pfts were a bit lower. He had a treatment in the office and another pft afterwards. Pfts increased slightly. Dr said DS9's airways open up better with...

DS is 64lbs and 53" and used to wear a size Med vest with his HillRom Vest. Back in Dec it was beginning to look too small so I called HillRom to find out if he was eligible for the next size up. The person I spoke with said his chest measurement of 24" was the max for a size M so he sent a size...

My 8 yo son was prescribed 2x/day for 20 mins three years ago when he was diagnosed. He has had a cold so he gets the vest 3x/day, but Sat. was busy so the afternoon treatment was missed. I decided to increase his night vest to 30 mins. instead of the normal 20 mins to make up for it. That...

Does anyone know the difference between the two inhaled antibiotics? My son just started TOBI and after learning about the recently released Cayston, I am wondering what causes a doctor to prescribe one or the other.

My son just started tobi so now he has 3 nebulizer cups - one for hypteronic, pulmozyme and tobi. How do you keep from getting confused on which one is which? I boil them every night and I am trying very hard not to get them mixed up. Is is ok to mark them with a sharpie? I keep thinking...

Does anyone know why a person with CF has to take twice the amount of the recommended dosage of prevacid? My 8 yo just started taking it 2x/day. I noticed on the box that 1 is supposed to last 24 hrs. Is it because people with CF have more acid than the average person? I have this question...

DS7 has been taking Vitamax grape chewable for the past 2 years. I opened a container of them and noticed there was no seal. Is there normally a seal over the container on a new bottle? There's a childproof cap, but no paper seal like on a bottle of advil. I guess I'm getting a little...

DS7 went for his quarterly CF visit in July and was found to be Vitamin A deficient. He started a supplement of 20,000 units/day last week. He is now tired, has no appetite and experiencing stomach pains - those happen to be symptoms of a Vit A overdose. DS also has hemorrhoids right now so...

The reason I ask is because my 5yo son started taking Creon 10 back in November when he was diagnosed. The nutritionist at the CF Center is satisfied with his wt/ht (45"/43 lbs) but has prescribed the enzymes because she said the CF guidelines are more strict. He takes 2 w/meals and 1...

Ok...so, my 5yo son started pulmozyme in Nov and has been doing great on it. I found out Monday that my prescription insurance changed so now I have to get the pulmozyme thru mail order since it is considered a specialty drug. I faxed the new presciption (just went to the new CF dr last week...

He has to take one capsule with each meal for a week, then progress to two with each meal next week. Dr said he has mild malabsorption (5 yo 44" tall 42 lbs) and wants to see if he will gain any weight. At his 5yo physical in Sept his ped said he was doing great with his wt/ht (this was before...

Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick...