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I was excited too thinking it was the triple combo; however, it's still another tool in the toolbox, helps some other mutations who are heterozygous delta f508. One step closer in my opinion!

DS had been on Orkambi for a little over a year, was a breeze signing up for it with Vertex GPS assistance, we were even thrilled to find that we could get 3 months supply at a time and then right before the new year, I submitted a refill request and......!!! We had an issue with our...

When DS gets a cold or a cough, we increase his nebulizer treatments, as well as vest/chest physiotherapy treatments. Since you probably haven't been instructed on it, you could google it and administer CPT to him. Basically cupping your hands and patting upper and lower portions of the chest...

DS is on Orkambi and during the week he usually takes it around 7:15 with breakfast -- lately he's been eating a gogurt, uncrustable (PB & jelly sandwich) and drinks carnation instant breakfast or whole milk. Then he take his 2nd one around 6:30 with supper. If he sleeps in he usually has it...

Usually DS' doctor prescribes an antibiotic based on whatever he's culturing. Usually the culture reports that come back from the clinic show what the particular bug is susceptible to -- when DS was culturing pseudomonas and had a productive junky cough, he was put on cipro. When he cultured...

DS was born with meconium ileus (bowel obstruction). Most of his symptoms were very loose stools and sinus problems. Couple of my friends were diagnosed later in life due to failure to thrive. Another child who has the same mutations as DS was diagnosed because of frequent bouts of bronchiolitis.

Was it a CF doctor who told you to give your son mucinex? We were always advised to avoid OTC cold medicines such as mucinex, decongestants (oral or nasal).... When DS does get a cold, we have him do sinus rinses. His nasal mucus is so thick his nose never runs. Sometimes when he was younger...

We've always worked about our work/school schedules for nebulizer vest treatments. I know of a few people who've gone to the daycare or school to do treatments during the day; however, we didn't want to disrupt ds' "normal" school routine and make him stand out. We do CPT (vest) in the...

There used to be someone on here -- Amy noexcuses who got NAC from Europe. I believe like any supplements, there aren't really any set standards and it's hit or miss in terms of being able to get a quality supplement. Here's a link to her old blog which talks about NAC -- studies, her...

I did see on the CFF link there's one in Albuquerque, which is probably an hour or so drive from Santa Fe. https://www.cff.org/Care-Centers/Find-a-CF-Care-Center/ Other options would be Texas or Arizona, though would be a distance. In terms of good myco care, I think Jewish in Denver is one...

Never heard of a flowmeter attachment on a nebulizer/compressor before, though have seen them the oxygen outlets when DS has been hospitalized. Yes, the tube pops off the compressor. Since I switched out tubes with a different set of wing tipped ones from the Pari LC packet, it hasn't happened...

DS is on orkambi and usually takes it with breakfast and supper. On weekends when he sleeps in he takes it with breakfast/lunch and then has a snack before bed usually a handful of nuts and a glass of whole milk

I just switched out neb cups and tubing -- we use reusable Pari LC's and the tube keeps popping off despite medicine still being in the cup. This usually only happens if the neb runs dry or there's a crimp. I use the pari tubing on our Invacare mobilare compressor because I've found the tubing...

That was always my concern at our old CF clinic. They would have CF clinic days where all the patients were seen on the same day -- community waiting room, toys, patients heading down to the hospital clinic Xray dept, Lab then the PFT lab, which was a booth. We never went because we were...

I was trying to find the reference, but a couple years ago the Vog mask became popular and I looked into it, but then I saw a statement from the CFF regarding concerns with reusable masks. I guess I'd wonder how one would clean/disinfect a reusable mask.

Yes, yes and yes! When our son was a baby I was forever listening to him sleep at night because his nose would get so stuffed up. We used saline spray/drops and would use a nose syringe to suck out the extra thick boogies. In fact, you know how some kids always seem to have a runny nose? His...

Excellent point about getting out if someone has the flu. A few years ago DH called me from the airport during a business trip indicating one of his coworkers was sick and that he wasn't feeling well and was going to have someone take him either to the hospital or to his parent's house. DS'...

I think the biggy is frequent hand washing. Our son is the one wcf. Everyone in close contact with him have always gotten flu shots. Wash hands or use hand sanitizer when everyone gets home, when they get to the car from the store, before eating out.... When I get a cold, I use hand...

My son was born with a bowel obstruction due to meconium illeus. He spent 6 weeks in hospital where a doctor suspected cf and sent in blood for a basic panel. There wasn't newborn screening at the time. No family history. His sweat test at 3 weeks was 37 and he wasn't very salty. Later on...

I agree. I used the talking points from the CFF letter, added individual info and tada, two faxes sent. Especially easy to use the voice to text feature on my phone, so I dictated my info. While I've called and emailed, this is another tool in the toolbox. Especially for those of us who...