ecorn-cf: App. question list

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Ripened cheeses, bacteria, moistures: Hi. In our family we like sometimes to eat not pasteurized and well ripened cheeses. Is it dangerous for our child to come with us to the cheese dairy (he doesn’t touch the cheeses and doesn’t visit the maturing cellars)? On the other hand, can he eat these cheeses (I think to the blue cheeses with moistures, “cantal” with dust mites on the rind or other milk-uncooked cheeses which contain of course bacteria)? Thanks for your response.; 02.08.2011

pepper: Hi, we have heard about bacteria in pepper (pseudomonas ? cepacia complex ?). Is it true, because we don’t use pepper yet? Thanks.; 02.08.2011

Fatty liver: Hello, Today, my daughter (will be 3 years on July 7, 2011) [question was asked in June 2011] and I went to her annual check-up. She has CF (del508). The gastroenterologist was quite satisfied, the pankreas was inconspicuous, although she has a pancreatic insufficiency and needs kreon. Futhermore, he noticed a slight, point-shaped fatty degeneration of the liver. Is this common for this age? What can be done against it? Do you use ursofalk® (ursodeoxycholic acid) at this point already or only in case of a beginning cirrhosis? Or is there nothing that can be done? Is the fatty degeneration the key enabler for a cirrhosis? Can occasional fatty stools caused by too little kreon accelerate the fatty degeneration? Many thanks. Vera M. ----------------- Ms M. asked a follow-up question which is copied below in the answer section.; 02.08.2011

Abdominal belt in physiotherapy: Hello, I have a question concering physiotherapy. Meanwhile, our daughter (2 years old) has received two belts that are placed around the abdomen and the chest (ribs). At the beginning, only one belt was used, and that at the level of the ribs. Despite explanation I am still not sure what the belt is used for. Why is the abdomen now bound as well? What is the effect of the belt? What is the optimal usage and how long should it be used? There seem to be different opinions. Would it be best to use the belt as often as possible or is it sufficient to use it twice a day during the inhalation and additionally at night? Many thanks for answering.; 02.08.2011

Outdoors amusement park for children: Hello, We would like your opinion on the possible risks associated with visiting an outdoor amusement park. In fact, we plan to spend a day with our 2 year old daughter, but we wonder if there is a particular risk, especially about a contamination with Pseudomonas Aeruginosa. Children's attractions such as "boat ride" or "logs" are not necessarily submerged but are subject to splashing water (eg http://www.fraispertuis-city.fr/attractions/petits / la-riviere-d-adventure /) and they are often the most appreciated by children. A question about the site has already mentioned parks, but only in terms of "air contamination". This risk seems low in the summer but what about the risks associated with the presence of water. Subsidiary question: what do you think of “ball pools” (eg http://www.fraispertuis-city.fr/attractions/petits/piscine-a-boules/)? Is it really a "nest of germs" as we sometimes hear? Thank you in for your answer. Sincerely; 01.08.2011

Rare mutation: Our son, almost 2 years old, has the mutations F508del and E1104V. The institute for human genetics told us that a prognosis cannot be given since his constellation was unique. Are you able to tell us something about it? Many thanks.; 01.08.2011

Drying devices after water damage: Dear expert team, in my apartment there has been a water damage due to a lacking water pipe during my holiday, that means the floor and 2 walls are humid. The mould has already been killed and now walls and floor have to be dried with drying devices. These devices reduce the air humidity to 30% and are supposed to run 14 days possibly 24 hours a day (due to the enormous noise level this is hardly possible). The drying company said to me that this would not be harmful to healthy people, one only had to drink more. How is this in case of CF, what do I also have to take into accout? Can I put the devices on at all when I am in the appartment or should I better put them only on when I am away? Many thanks in adavance, Best regards,; 01.08.2011

CF dentist: Does anyone know a dentist in the region of Hannover, Germany, who is specialized in CF patients?; 01.08.2011

Efficacy of VX 770: Dear expert team, I have besides F508del the mutation "FTR del 2,3". In case of the homozygous occurence of F508del, one does already know, that VX 770 is efficient only to a very small extent concerning the nasal potential difference. It is known to me, that there are at the moment no empirical results on the efficacy of VX 770 at the mutation "FTR del 2,3". However, is there any knowledge if more proteins reach the target membrane in case of the mutation "FTR del 2,3" in comparison to F508del (so that also VX 770 could have higher chances to influence the nasal potential difference positively)? Many greetings; 01.08.2011

Virulence of ESBL-E. coli: One year ago, during a bronchoscopy of my son (13) ESBL (=extendend-spectrum beta-lactamase) (e. coli) have been detected in the lungs. Which specific potentail of danger have these germs, particularly as I do only get few to no information from the center, to which subgroup the specific ESBL-germ of my son belongs to. The statements of Prof. Tümmlers answer to a former question in this forum concerning an ESBL-positive grand-grandmother let one shiver. Many thanks and many greetings; 01.08.2011