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Long time member of this site, Mom2RT recently posted on facebook that her 14-year-old son recently got a lung transplant. Those of us who've been on this site for awhile have watched Reese's progress. He was recently the rock start of the month on the following site...

A couple years ago I'd seen a similar article. There are two children in our area who had/have it. One underwent a double lung transplant at the age of 12, the other is a couple years younger than DS and went to the same elementary school. He struggles a lot -- iv abx, hospitalizations.... I...

I can't let myself get terrified about it. When DS was first diagnosed cap on costs for care were also 1-2 million. With DS on Orkambi... It is a concern. I guess what keeps me semi-sane is that the same people who were against ACA are also utilizing it -- those who have kids in college who...

I always stress that if you or your child is sick, keep pushing for answers. If it's not CF, then what is it? I get frustrated when people are told because of genes that supposedly are non-cf causing or non-symptomatic that they don't have cf despite symptoms, despite there being two copies of...

When he first started taking it he had cold like symptoms -- sniffles, throat clearing/cough and he had very very loose stools. I recall thinking since most of his symptoms are sinus and digestive that the so called purge people talk about was mucus from his digestive tract because his stools...

I licked my child's forehead the other night. From the time he was a baby, I'd kiss his forehead and my lips would almost burn from the salt. He's not salty at all. I asked my husband if he thought that was odd. His response was "yes, it's weird that you licked your child". I meant weird...

There was air trapping early on when he was recovering from an exacerbation, but the infiltration was most likely the inability of getting a clear x-ray and probably read incorrectly. Rechecked past reports and it showed up as RMS or right middle lobe syndrome -- possible lung collapse when he...

I always request paper copies of labs, clinic notes, etc. DS used to have chest xrays at the local CF clinic every year the reports which always showed "airtrapping, thickening and infiltration". DS had no symptoms, nor was the local cf team ever concerned with the reports, was never...

I think the key is to find a local doctor who plays well with others, defers to the CF clinic if there are issues. Otherwise it can be a waste of time and money. When DS was a baby I'd take him in to his pediatrician who was also head of the local cf clinic and the number of times we'd get...

When U of MN with Dr. Warwick was regarded as one of the top cf clinics in the nation I believe there were several individuals on this site who traveled to Minneapolis for a consult from all over the nation -- TX, CA, MO.... And I know there are several who go to Jewish in Denver as well. When...

DS has been on actigall since he was a newborn after tpn caused issues with his liver. His doctor did indicate that people wcf should have regular ultrasounds on their gallbladder when they get older because they can fail.

I had a very difficult time choosing. All exceptional men and women

As far as I know, Orkambi is primarily for ddf508, though I seem to recall a couple people being able to get it off label --- meaning they didn't have two copies. Not sure if they saw any benefits. The CFF has a list of drugs currently under development, including some focusing on those with...

This is exciting news! DS has been on Orkambi since last year and we've seen improvements in growth (height and weight), lung function, normal flora in cultures. I recently read an article about a child on the west coast who had chronic sinus issues, chronic infections to the extent they...

I would remind everyone to be patient with this site as everyone is working hard to get the forums back on track and moving recent posts from the other site to this one. Not everyone has heard about the move, not everyone has learned to navigate the old (now new) site. We're all in this...

IMO, try a sinus rinse, like the Neil Med squirt bottle, not the netti pot. You can find videos online showing how to do it or with tips. DS has been doing them since he was 4 years old and it's amazing the amount of crud that came out of that tiny little nose. He wasn't too thrilled at...

Interesting... https://www.ucsf.edu/news/2016/09/404301/3-leading-bay-area-research-universities-partner-600m-chan-zuckerberg-medical

Dry cough could be post nasal drip. In my son's case it happened when he cultured steno. maltophilia. Cough went away when he was prescribed septra.

Hopefully you'll get a response. As with most bugs, people react in different ways. There are some who've cultured it for years with no little or no symptoms, others have a very difficult time. Here's a link to the CFF on cepacia. Not sure the date on it...

So glad they were able to make it work for him and he had a great time!