I've just come back from a routine clinic and the consultant wants to put my son (aged 6) on DNase daily for evermore. Do you have any feedback about this? Or still have the feature ask the expert? Apparently they use it in the USA and Europe from 6 or younger, and they feel that lung function is improved for the long-term. Obviously this is a huge decision for me, and I don't want to make a snap decision. My son's lung function is generally good, usually has half dozen courses of antibiotics annually, and has only been admitted for IVs once when he was 2. I hope you can advise accordingly on how evorn-cf feels about it.
Aquagenic Wrinkling of Palms
My daughter (5 y.o.; F508del/CFTR dele2,3) seems to have Aquagenic wrinkling of Palms. What does this condition mean? IS it somehow dangerous? Should it be treated?
h pylori
trying to get rid of this for a year on different meds from my doctor---always taking the breath test after and always positive----can u kindly advise? thanks
extreme hand wrinkling
Hello, I currently am experiencing extreme hand wrinkling within minutes in a bath tub or shower my hands are extremely wrinkled and burning or tingling. I do not have Cystic Fibrosis or diabetes...I do have JRA.. Does it have to relate to a disease?
Abnormal sweat test
My 6 year old has had complications from birth. At 6 weeks old he was hospitalized for an extended length in time for R.S.V. and has issues since then. He has had bronchitis a few times, croup, had two adenoid removal surgeries, a tonsillectomy, been diagnosed with chronic sinusitis, and is generally always sick. He coughs up lots of dark green and yellow phlegm, and has coughed up blood several times (which has been said to be due to the sinusitis). He also just has his nasal passages opened because the infection was to thick to drain on it's own. Meds don't clear it up.We recently started seeing a new doctor because his last doctor kept saying it was allergies and asthma and all of the medication he put him on wasn't working. The new doctor wanted to start over and rule out everything to try to get to the bottom of his illnesses and sent him for a sweat test. I received a phone call last week that his test results were abnormal (his sodium chloride level is a 53) and we are now being referred to a children's hospital for further testing. I was just wondering what the outcome of the second tests may be (are they usually similar to the first results?) and how likely it is that he would be diagnosed with cystic fibrosis or atypical cystic fibrosis. He is mildly salty when I kiss him and his bowel movements are sticky and tar like at times, and also strange colors (like bright blue, green or yellow). Thank you
Abnormal sweat test
My 6 year old son has always been ill. He has had three sinus surgeries, and is in the 5 percentile for weight and height. He has had RSV and bronchitis more than once and been to the er with stomach pains several times. He has asthma and chronic sinusitis . He had a sweat test with the result of 53. We have an appt for a second sweat test. What is the likelyhood that he will be diagnosised with a form of cf?
29 years old CF patient
I am from Romania and I have a 29 years old son with CF, which was diagnosed late... when he was 24 (genetic mutation-milder form= G85E; R347P and test sweat = 110 ) In childhood he was diagnosed with a syndrome malabsorption . At age 12 he already hadsinusitis and nutrition problems, dry cough.. In Bucharest I consulted over the years, medical specialists: Otorhinolaryngology, nutrition , pulmonary, who have treated each disease on his specialty... In this moment he is under observation and treatment of a doctor specialist in CF from Bucharest with medical tests regularly at 3 months, and he takes proper medications ( Kreon, Pulmozyme,Seretide, gentamicin/ colistin in aerosols, vitamins, omeprazol) I wish to find another medical opinion (I know at this momment, no cure found in this disease, yet!) but I would like to find what treatment options currently exist in THERAPHY OF CF IN ADULTS Can you please advice me if there is any clinic or hospital specialiezed in the treatment of CF for adults especially, with good experts where my son can be checked .. in Europe or other places? I am looking forword for your answer,
staphylococcus aureus
What are your recommendations for the treatment of Staphylococcus aureus? In my country, staph is untreated If there are no significant symptoms. My son was diagnosed with staph, but it is not treated becouse he is a good general health with just a little cough, no fever, ... Thank in advance
Pseudomonas aeruginosa
Is there a danger of getting Pseudomonas aeruginosa when treated staphylococcus aureus?
R117H negative for 5T
My husband and I are both carriers of identical strains. R117H negative for 5T. Are there any documented cases with this combination and what CF symptoms developed. Our son has both genes.
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