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An article sent through Johns Hopkins parent's email --<br><br><a target="_blank" title="" href="http://www.telegraph.co.uk/health/healthnews/8589765/Dishwashers-harbour-killer-bugs.html">http://www.telegraph.co.uk/health/healthnews/8589765/Dishwashers-harbour-killer-bugs.html</a><br>

Dear moms/grandmas of children with CF, Everyday, you are an inspiration to me.  Motherhood is a unique journey.  For moms of children with CF, that journey is even more unique and special.  Your strength is admirable.  Your dedication to your child/ren is awe-inspiring.  YOur tireless advocacy...

Hi--We have always known there is another teen at DS's school with CF. DS is the atypical kind (late dx; more effects on pancreas than lungs) and the other child has classic, dx at birth CF. DS is a year older and they have no classes together and rarely bump into each other. However, they...

Hi--Another pretty simple question about hospital stays.... Pre-op called yesterday and said to pack a bag. So--as I am figuring out what all needs to be packed, I am assuming all his meds (including zenpep) would be provided by the hospital. True? Adam was also asking if he would have his...

Well, I just need a bit of a vent. DS is so overwhelmingly fatigued. He has only been to one day of school since last Wed. It takes a toll on him because he is such a school-lover. He is in his 10th day of cipro and seems to be getting worse in terms of the fatigue although he is finally...

Hi-- Just trying to figure out the logistics if DS is admitted next week after his bronchoscopy since this will be his first hospitalization for IVs. I will need to stay in Baltimore with him--we are about 1.5 hours from Hopkins. Parents--do you stay in hotels, kid's rooms, or where? Is it...

WE are, for the first time, facing the possibility of IV meds next month after a bronchoscopy. When on home IVs, with a three times a day dose, can kids go to school? DS is in 10th grade--not sure what to expect if he needs to do the whole IV thing?

After more tests at Hopkins (we went to seek a second opinion), Dr. Mogayzel confirmed a CF dx for Adam. At clinic on Wed., Adam's PFTs were down almost 10% from last appt in December. That, along with the confirmation, means he is doing airway clearance for the first time. He has started...

Hi All--I had a nice conversation with Dr. Mogayzel today. He summarized Adam's test results. We go next week for a follow-up and a more detailed discussion. His sweat test came back borderline again--46. As for the NPD, I do not have the actual report yet, by his baseline was normal but the...

Just curious--DS has Gilbert's Syndrome. His pediatrician mentioned it last year; Hopkins confirmed. Anyone else's child have this along with CF. It is chronically elevated bilirubin and has a hereditary component.

Hi all--I know in the past someone posted how to de-cipher NPD results. I searched but cannot find it. DS has another sweat test, first CT scan of lungs and sinuses, and an NPD today at Hopkins. If anyone has info on the NPD, I would appreciate it. Thanks from icy PA

Hi all--Adam had his first visit to Johns Hopkins yesterday. It was a great appt. We were going for three main reasons: (1) CHOP said no CF; Children's Nat'l said CF. His mutations are supposed to non-symptomatic and his only sweat test was borderline. Zenpep has helped him tremendously...

Taking Adam to Hopkins Dec 1 (finally) for a third opinion. Pretty sure he has CF but if it is confirmed, I want to get an opinion on his current pulmonologist's "do nothing" for the lungs stance. When I was talking to a nurse at Hopkins and she asked what meds Adam was on, she was pretty...

I am always a little confused by PFT results. Most people refer to their FEV1 numbers when asked about their PFTs. Why is this? Is this the most informative number in terms of CF? I thought it was a measure, in general, of how well the large airways are doing but that CF is an issue that...

I have lots of lactose-free scandi shake mix in chocolate and vanilla. PM me if you are interested--they are free!

Just wondering how long you typically wait for a return call/email from doctor on a non-urgent issue? At DS's last appt., we were told to contact clinic if he continued to have stamina issues that were leading to any missed school time. The doc had a medication (anti-depressant) that she would...

We have chocolate and vanilla lactose-free scandi-shakes that my DS won't be using. I will be glad to send them to first responder.

Hi---DS started 10th grade on Tuesday. Had a good productive summer. Not sure what it is about school but he is completely exhausted. He made it through 2 full days; only 3 periods today. Sleeping 2 hours after school and getting 8 1/2 hours a night. Had same problem last year. Doc does...

Hi--Just wondering if any of your children basically do nothing to keep their lungs healthy/prevent future problems? My son, dx in Feb. at 14 years, does nothing for his lungs except pulmicort, ventolin as needed. We do manual CPT when he has an URI. His FEV1 are usually 80-82%. I took him...

Being relatively new to the CF world with my son being dx in Feb., just wondering what the difference is btw a throat culture and sputum culture? Or are they two ways of getting the same information?