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Pancreatic sufficiency
Hello, My 7 month old baby has CF (26AG and G542X mutations), it is currently pancreatic sufficient. If it lasts over time, from what age on can we expect him to be pancreatic insufficient and it will remain for life? thank you
19.07.2015
About CF/carbon dioxide
My friend has CF and now a high content of carbon dioxide has been measured. What does this mean?
19.07.2015
Can one sibling have an atypical CF and one sibling a classical one?
Dear ladies and gentlemen, we have 2 sons, the older one is 2.5 years old, the younger one is 5 months old. Our older son has a massive failure to thrive, he weighs with his 2.5 years only 9 kg. As he is a former prenatal baby with a half-side paresis, the physicians thought the reason for this were there. Otherwise the boy has no symptoms of CF. The pediatrician however, wanted to rule it out via sweat test and this showed once a slight positive result (in a CF Center). Afterwards we went to a recheck in the nearer regional hospital. Which kind of testing they used, I do not know, at least we were told, that the values of salt were so low, that CF could be ruled out. I was content with the result and got pregnant again. We had a change of the physician of our older son and we were told that diagnostics with a slight positive and a negative sweat test were not correct and our son had to be tested now again. This time again in a CF Center. A sweat test had been done via Makroprodukt. Amount of sweat 43 mikrolitre. The result was 30 mmol/l chloride. Therefore the borderline value of normal. The physician said, another sweat test would have to be done. However, our first born would have only an atypical CF at least, due to the low values, that has not such a bad course of the illness. However it is like this, that our younger son, in contrast to the older brother, is very suspicious for CF. Has breathing sounds since the age of one week, whereby I cannot hear if it comes from the nose or the lungs. Cramping abdominal pain, whereby the whole body is cramping. Permanent diarrhae. He weighs with 5 months only 6 kg, in spite of his great appetite. However no pneumonias. Now my question: Can it be that the youngest son has a severe form of CF while his brother has only at slight form at least? Both boys have genetically identical parents. After 1.5 years of diagnostic procedures I would be thankful for any help, especially as we would like to have other children. Many thanks for your help.
19.07.2015
pseudomonas aeruginosa
Has besides killing the Pa by antibiotics, also the mucus layer to be broken down?
19.07.2015
Only mother is carrier, is CF now excluded?
At the 20-weeks ultrasound echodense intestines were seen. Research has been done whether my partner or myself have the CF mutation. Yesterday, after 2 weeks of uncertainty, we had the reassuring call. I indeed seem to be a carrier and my partner not. As I understand CF is now excluded, but they said by the phone that it happens rarely but that they still could find something in my partner. Now they are going to perform tests on his blood. Can it really happen that they first say that my partner does not have the mutation and then it turns out that he actually is a carrier? Tomorrow we have to go to the hospital for another ultrasound and then, of course, I will ask it. But it is still haunting in my head. Hopefully, I can already get some clarity about it.
19.07.2015
Heel prick and CF
My question: Can you see in a heel prick test whether the baby is a carrier of CF? Can parents also be tested at the same time?
19.07.2015
Pseudomonas aeruginosa and Staphylococcus bacteriae
Dear, Can patients with CF and lung infection with eg Pseudomonas cough up bits of tissue?
19.07.2015
Blue Flag and swimming for CF patients
The Blue Flag is an international quality label in Flanders awarded by the Association Bond Beter Leefmilieu (BBL) and the Foundation for Environmental Education (FEE) and guarantees sustainable quality tourism on the coast and on inland waters. With this label Marinas and swimming ponds can differentiate themselves in water quality, environmental management, environmental education and safety. As the quality label is to be renewed every year, choosing for the Blue Flag requires a sustained effort from the hosts. The question: Can we assume that all children and adults with cystic fibrosis can swim in waters with the flag label? I think about swimming in ponds like De Lilse Bergen, het Zilvermeer, de Mosten , de Gavers, etc... Usually excursions are planned by youth associations, schools and sports days/camps. Many thanks for your reply
19.07.2015
CF like disease
Hello, What does this diagnosis mean for our child? (cough, bacterial colonization, pancreatic insufficiency) Friends told us that the genetic defect is not located on the usual gene but outside so that a mutation cannot be determined and thus the new therapy options cannot be applied. Thank you!
19.07.2015
Exacerbation after infection
I am a 40-year-old patient with CF and have 3 children. Actually I got a beginning cold last week with strong throat ache and rhinitis, after about 2 days a got a big spot (?) at the chin, which was very painful. My treating physician was unfortunately on holiday. I was right away beginning to take in ciprofloxacin 500 2x1 and doxycyclin 1x1 tablet, additionally I have a permanent antibiotic therapy with azithromycin 500 3 times a week. After two days of ciprofloxacin complete worsening, impression of dyspnea (strong obstruction), what should I do then, the physicians in my hometown are not familiar with CF, therefore I took a new antibiotic drug, namely cotrimoxazole 800mg 2 x 1 tablet and doxycyclin; furthermore I inhale with colistin and took prednisolon after a scheme, beginning with 50mg, at the end of about one week reduced gradually. This scheme I got from my physician last year in a similar case. In the meantime I have a bit less dyspnea, however it is still not really good, as in my family there are many infections....I will begin today with the inhalation of aztreonam, lets see what this will do. Otherwise I would like to ask which kind of therapies you would propose; do you also know such cuts? I have the impression that if one gets the menstruation, this has also an influence on the immune system, I have realized that I am more susceptible for infections then. Furhtermore I noticed, that in that time haemoptysis occurs more often, did you also hear about such experiences of your patients? Otherwise I can say about my person that I am retired however I am taking care of a household with 5 people (husband 41, children 17, 11, 2 and me), I am doing the washing, clean, prepare the meals, take care of, play and am just a normal housewife. What else can I do in case of dyspnea and obstruction, as I am also taking spray with ipratropium bromide and fenoterol. Inhalation with NaCl 0,9% and 8 drops of salbutamol 3 times a day. Best regards and many thanks.
07.07.2015
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