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Adolescence
Dear experts, our son suffers from CF, a benign course, is of normal height and weight. Since he has been 14 years old, he slighted his therapy more and more, in the meantime he is 21 years old and is fortunately still quite fit, FEV1 about 80%, in spite of zero therapy and zero sports. Even so he visits his routine investigations (he takes enzymes, vitamins only sporadically). Can we hope that this runs still under "delayed puberty"? We are asking ouselves if this would change ever....
02.02.2011
Care
What are points of attention for care and follow up of people with cystic fibrosis
20.01.2011
Does compressed air dry out the lung / ABPA
Hello, I want to ask 2 questions in behalf of my boy-friend, who is 28 years old and suffers from CF. For a few weeks, he is for the first time in his life under oxygen therapy (24 hours) and has to adapt himself additionally 5 hours a day to a compressed air device, in order to bring the C02 value down. What is responsible for his bad clinical condition in the first row - besides the chronic germ Stenotrophomonas for 1 year - could not be revealed clearly until now, in spite of detailed tests. The test for ABPA has been borderline however and he gets voriconazloe and cortisone in addition to the actual IV-therapy. 2 questions: -In the oxygen tube, water is collected therefore there is the question, if for hygienic reasons an abandonment of the aquapack would make sense with 1l/hour, but in case of using the compressed air device - which is anyhow inconvenient - this could be probably disadvantageous due to increased drying out? - My friend stays at the moment in the house of his parents from the 1930ties, which is visually in good condition. The physician of my friend however had the suspicion from afar, that he could be exposed to mould fungi there (possibly not directly visible). This is hard to check. In the basement and in the poorly isolated attic, which is wainscoted with wood, possible mould could not be excluded, he avoids however entering those rooms at the moment. How should one behave concerning this problem? Perform mould tests? Could those be paid by the health insurance (probably not)? Many thanks and best regards,
20.01.2011
Prescription of Creon without clear diagnosis of CF
Dear expert team, my son (2.5 months) is in hospital since birth. He has had a permeable small bowel and birth has therefore been induced in the 32nd week of pregnancy. Since birth we have been told by the doctors, that our child might suffer from CF, however no test has been performed yet unfortunately (nor a sweat test, nor a genetic test) and therefore a clear confirmation have not been given. Since today our child gets Creon (8x1 spoon per day), which is according to the leaflet given only to patients with CF, as he has an extremly distended abdomen since the last bowel operation. Now to my question: can this drug also harm in case he does not have CF? I feel that it is no right to give such a drug without a clear diagnosis.
20.01.2011
Pain
Hello, My daughter with cystic fibrosis (26 years old) has pain in all joints, she suffers a lot. The doctor of the CF centre gives her ibuprofen, but it does not relieve her a lot. Can you tell me if there is anything else to do? Thank you for your reply.
20.01.2011
pain in a young child
My 4 years old CF daughter complains for already one year about acute and very frequent pains (3 - 4 times a week) in legs (knee, ankle). Especially after intense physical activity. It wakes her at night frequently. Nevertheless, no redness, nor heat. According to the CF centre, it is not an inflammatory syndrome. Nevertheless the pain is very real, calmed by Acetaminophen and relieved temporarily by massages. Have you an idea of what it could be ?
18.01.2011
ABPA and big repairs at home
We plan to have big repairs in our apartment. For years, our daughter has been treated for ABPA. She will leave the apartment in order to avoid any aspergillus contamination. Our question is when should she come back after the end of the works: how long should we wait to avoid any recontamination with an aspergillus still present in the air?
18.01.2011
nutrition
Dear expert team, I have a question about nutrition in CF. In general it is said, that the increased calory need in CF should be covered especially with an increased intake of fat. But: increased fat intake means of course also a more intensive repletion. Now it is known for years, (only the german society for nutrition (DGE) does not seem to know this...), that for healthy people the intake of (healty) fats should not count for "fat-makers" - as it is postulated very often- but rather the carbohydrates count as "hunger-makers" (due to the reaction of the insulin) and therefore serve as a "fat-maker". Is there not the inversion of the argument right for CF patients: eat more carbohydrates? And as a consequence get more hunger? And as a consequence: eat more? Problems could occur of course with diabetes, but for non-diabetic CF patients this would probably be the easy variant to come to a better weight?
18.01.2011
Journey in Peru
I am a cystic fibrosis patient. I’m 27 years old. I would like to travel in Peru. As I read some people are sick because of altitude, I would like to know if this journey is recommended for cystic fibrosis patient. I have a good respiratory function (between 80-100%) and never had oxygen supplement. Thank you for your advices.
13.01.2011
Sleep disorders
In young CF children (2-3 yrs old), is there more sleep disorders secondary to gastrointestinal troubles?
13.01.2011
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