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We are having our first experience with TOBI. Our son is 3 years old and uses a mask for his TOBI. Today he is on his 4th dose and now has bilateral eye redness. They are blood shot on the insides of the white part near the nose but not the outside so much. I think it is from the mist coming up...

Out of sheer frustration with our current clinic we are going to try UofN next appointment in October. Anyone have any advice or anything we should keep in mind or know before we go. We have 2 children to be seen. I have talked to a couple of parents whos kids go there a couple of years ago...

We live equal distance between 2 clinics. We chose to go to the clinic we do because my mother in law lives in that town. Every time we go there we are there for 4.5 hours and I am so frustrated by the time we leave I could chew nails. I have actually walked out before because we had sat and...

Katie and Zeke had clinic today. Katie is now 10 and Zeke is 2. We got to the hospital at 7:15 so Katie could have her yearly chest x-ray and usual PFT's done before we went to the clinic at 7:45. We started out with 2 pharmacy students that wanted to review meds. That took an hour and my kids...

Wellmark BCBS of Iowa has been covering my kids Pulmozyme since diagnosis for the last 2 years. For the last 6 months this has been paid as a prescription and not as part of our medical policy which means a difference of a 387 dollar copay vs a 159 dollar copay if it is submitted as a medical...

Anyone have 2 kids with CF and have one pancreatic insufficient and one pancreatic sufficient. our son was diagnosed from the newborn screen and is also pancreatic insufficient. He is DF508 and we do not know what the other mutation is with a very positive sweat test. The CF clinic...

My son Zeke 17 months old. He had he RSV shots last winter he would have started at 6 months and ended when he was 1 year. The entire cost of the shots was covered by his insurance last year and he also had iowa Medicaid until he turned 1 year old. This year the clinic has prior approved the...

I am working with some legislators in Iowa trying to get funding for people with cystic fibrosis that have insurance but cannot afford the costs of their health care like Medications and doctors copays. Iowa has a ill and handicapped waiver but you have to be declared disabled and my kids are...