ecorn-cf: App. question list

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Permanent Cough !!!: Hello, My 13-year-old son has hardly been affected so far. The FEV was 95, little to no sputum. Since the beginning of June, however, he has had permanent cough, with the FEV dropping to 75, and a considerable increase of sputum. All tests carried out so far (MRT, CT, ABPA diagnosis, lung x-ray [translator’s comment: not sure about this term], blood tests) were okay. On prick testing, he reacted to molds, though, which were not detected during a throat culture test, however. ABPA diagnosis was negative. Neither several weeks of Budesonide inhalation nor a 3-day oral steroid therapy brought any improvement. A three-week stay on the Canaries did not change the results, either. As a final diagnosis, a BAL is to be done now. I am not thrilled about this, but since my son does not emit sputum, I do not have a choice. Perhaps there is a germ sitting somewhere deep down that cannot be detected by a throat culture test. Now, however, another affected mother told me that it was exactly the same with her son during puberty, and that during that time the sputum and cough often increase and the FEV worsens. I cannot imagine that, however. Since I am a nurse myself, I am beginning to feel really stupid. My son keeps coughing, and no abnormality is being detected. Can it really be connected with puberty?? Sincere thanks for your advice. Muckel.; 03.12.2008

Vitamin E Dosage: Dear team, yesterday, my general practitioner cautioned me about vitamin E. He said it could cause lung cancer and other side effects. Therefore, my question is: based on the current state of knowledge, which vitamin E dosage (in IUs) is recommended for an adult CF patient with a complete pancreatic insufficiency and a weight of about 64 kg? Of course, the pancreatic insufficiency is treated with a plentiful substitution with pancreatine. Many thanks.; 01.12.2008

Classic CF: Hello, our CF doctor told us that our son (now 10 weeks old) has classic CF. Until now (thank god!), he only has a pancreatic condition. After numerous tests, all other organs are normal. Nevertheless, apart from pancreatine, he is getting a vitamin compound and ACC juice and is gaining weight properly. He was born weighing 3880g and is now at 7100g, and just from breast milk alone. :-) This was all the information I have for you, and now my question: what does “classic CF” mean, and what do we have to expect, roughly speaking? Many thanks in advance…; 01.12.2008

Smoking: I am 17 years old and was diagnosed with CF already after birth. I have had a boyfriend for a year now who smokes, also in his room, though only with the window open and never when I am around. When one enters the room, one does not smell smoke, but my lung function has decreased, and so I wanted to know if that could result from spending time in his room, even though I can really say that one actually cannot tell that someone is smoking in there. Thank you for your help.; 01.12.2008

Is lung auscultation necessary?: I am asking on behalf of a friend who is a CF patient. My question: is lung auscultation part of the necessary physical examinations in the context of a quarterly clinic visit, if rale was noticed in the past? In the pediatric clinic, a physical exam (also of the abdomen as well as the mouth and throat) was common during every clinic appointment. In the adult clinic, my lung was checked (percussion and auscultation) only twice during the past two years (that is, over the course of eight visits), even though I indicated infections, whistling noise during breathing, increased sputum, and shortness of breath, respectively. After I asked for an auscultation once, my request was accommodated, but since then the relationship to the clinic has been strained. It was made quite clear to me that that was considered an inappropriate demand. In CF-Fokus, issue 3/2008, page 3, it says: “The results of lung auscultation are important for the prognosis, too.” How am I supposed to act in the future? Thank you for your answer.; 01.12.2008

Air humidifiers for the home: My baby (4 months old) has been diagnosed with CF. I'm wondering whether we should get a humidifier for his room to a) clear the air and b) increase the moisture in the air which may help his lungs...is this worthwhile? Do you have a point of view on getting an air purifier / filter versus getting a humidifier?; 01.12.2008

Clay: Dear expert team, Is there any danger for a child in working with clay, such as making pottery because of different germs? Thank you very much for your question.; 01.12.2008

Increased airway resistance: Dear expert, The lung function test of our son, 5 years old, always shows an increased to highly increased airways obstruction. Which measures (devices, perhaps Cornet) are appropriate? We use the flutter daily, RC cornet every now and then. Thank you for your information.; 01.12.2008

Lung Transplantation: Good afternoon, three weeks ago, our baby son (8 weeks old) was diagnosed with Cystic Fibrosis after the values of his neonatal screening were increased – a nightmare!!! First examinations concluded that he is missing a pancreatic enzyme. He now has to take pancreatin, simethicone, a vitamin compound, and ACC juice. He is being breast-fed fully and has been gaining weight properly from the beginning. In addition, we are already supposed to do physiotherapy. And here comes my problem which keeps me awake at night: the physiotherapist told us that all CF patients will require a lung transplant at some point. Is there any truth to that statement? She also said that our son was short-winded and would therefore probably get oxygen through a nasal tube soon. The lung is not affected, though; our paediatrician and our CF doctor find the lung to be completely normal. How can the therapist make such a statement simply from looking at our son? We are very upset and obviously do not want to continue working with this therapist.; 01.12.2008

Articulation: Is there a link between CF and problems with articulation?; 01.12.2008