Topics

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
CF
My mother caughs a lot and states she brings up sticky secretions. Can it be that at her age she gets CF?
02.12.2010
genetic testing
My partner was previously tested for cystic fibrosis. My partner doesn’t seem to have CF. Now we would like to have children but we wonder if (especially my partner) needs to have a genetic test done. His grandmother carries a CF gene. I have doubts because my partner was tested previously.
02.12.2010
CF have sex/kiss
If I kiss or have sex with a CF patient is this dangerous for her or my health? Can any of the 2 of us get disease from it?
02.12.2010
CF
Are there different forms of CF?
02.12.2010
CAYSTON (Aztreonam Lysine)
Hello. We asked that our daughter benefit from Cayston®. Could you tell me wether the tests are conclusive and if the people who experienced it have felt some improvement?
30.11.2010
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