Topics

Ice scating
Dear answerer, our son has CF. We have been to the ice scating stadium recently and suddenly there came from above smoke/dry ice? - we do not know what it was. We have asked ourselves, if the breathing in could be a problem because of CF-germs, especially Pseudomonas?
07.12.2010
Lung
Hello, my daughter, 13, did well until april. Then she got a pneumonia and a pleuritis. She struggled for a long time with that. Now an operation should follow after many investigations, the middle lobe of the lung should be removed as it collapsed during a bronchoscopy. My question: is it really necessary or can this be postponed as long as possible?
07.12.2010
Pseudomonas
We have received an antibiotic drug, which has to be mixed togehter by us with water for our CF son. He has to take it for 14 days. In how far is there a risk, that Pseudomonas grow in the preparation within those 14 days?
07.12.2010
Screening
Hello, I am 30 years old and 3 months pregnant. My doctor advised me to check for DF508 together with Papp-A. I understand that this is one of many mutations. There is no history of CF in my or my spouse’s side of the family. Do you believe that the screening should involve a complete check (the one that identifies 85% of the mutations), or is this something reserved for special cases? Thank you.
06.12.2010
Prevention
Hello, I have a 2 1/2 years old son with CF. I was wandering weather nebulized hypertonic saline could prevent colonization, or what other mesures would help/prevent any infection risk. Is it a good idea? Best regards,
06.12.2010
Xolair (Omalizumab)
My daughter, who is 43 years old and has cystic fibrosis with severe allergy has been proposed a treatment by Xolair. Can you tell me more about it? Thank you.
06.12.2010
Atypical CF?
Our daughter is 8 years old. The problems started after a preterm birth already in her first year of life with several obstructive bronchitis and pneumonias. From the second year of life on long-term therapy with budesonide. With 5 years endonasal bilateral operation of the frontal ethmoidal sinuses and fenestration of the maxillary sinus bilaterally as well as adenotomie. Since then, chronic sinusitis, chronic bronchitis, constant yellowish/greenish sputum, polyposis nasi and bad general condition. Further investigations revealed: nasal N0 480 ppb; exhalative NO 7.3 ppb (Primary ciliary dyskinesia excluded to 60%); bronchoscopy showed a streak-atelectasis in the segment 8/9 as well as bronchiolitic changes in the left lower lobe, haemophilus influenzae type B has been detected. Since the second year of life until now about 15 trials have been undertaken to perform a sweat test. These all have however not been conclusive because of too few amounts of sweat. Actual therapy: cortisone containing nasal spray, azithromycin, Fluticasone and salmeterol combination inhalation therapy, Cornet, Trampolin, nasal shower. Trial of fininshing of azithromycin after 1.25 years was not successful and have been restarted after 5 months. Genetically until now no prove of CF, pancreatic elastase normal. Our daughter and we suffer more and more because the illness has "no name" and we cannot face up with the causes and a predictable course. We get more and more the impression to fall through " a raster". We are struggeling most with the question, if our daughter is not simply a victim of percental probabilities resp. exclusions (Primary ciliary dyskinesia excluded to 60%; no genetical proof of CF, but only the most common changes are investigated, etc.). We are afraid, that due to the missing diagnose, important things for conservation of the actual condition remain undone. Is there also the diagnose of an "atypical CF" or can we really assume that our daughter does not suffer from CF? Many thanks!
06.12.2010
Pseudomonas
My 9 year old daughter has a lot of lung problems. She has been extensively worked up for CF (Nasal PD, rectum biopsy, genetic examination, sweat test, etc.). The conclusion was that she doesn’t suffer from CF. None of the tests done were abnormal, but it was concluded that she is a CF carrier. Despite many examinations it is unclear what is really wrong with her. At present she seems to be infected with Pseudomonas. Everywhere I read that this is very specific for cystic fibrosis. Should the diagnosis of CF be considered again?
02.12.2010
Treatment after lung bleed
What are points to be observed after lung bleed?
02.12.2010
heel prick?
Is CF tested during heel prick?
02.12.2010
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