ecorn-cf: App. question list

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Pseudomonas after lung transplant: Dear expert team, is Pseudomonas aeruginosa dangerous for a CF patient after a lung transplant? Kind regards, S. N.; 24.03.2009

Pseudomonas in lakes and ponds: Dear expert team, I have a question about the problem germ Pseudomonas: What about the risk with lakes and ponds? My husband likes to go fishing, and I would like to join him together with my son (6 months old, CF). Before I do so, however, I would like to know what kinds of dangers could be involved for my son. Kind regards.; 24.03.2009

High CRP: Dear Expert team, My son’s (30 years old, CF, diabetes) CRP value is between 100 and 200 on a regular basis. His attending physician does not have an explanation for this. He says this level would be atypical of CF and that he has never seen it in his practice before. In the course of an i.v., the value drops to around 30 but then rises again rapidly. Severe inflammatory anemia is also connected with this (haemoglobin 9.2). Is there an explanation? Kind regards, Gerda Schmitt; 24.03.2009

R1048G mutation: My husband is a heterozygous carrier of R1048G, I am a heterozygous carrier of R1162X; my 4-year-old daughter has a mild form of CF, which, however, seems to be attributable to my husband’s genes. What information is available about R1048G so far?; 24.03.2009

PTC 124 / Vertex VX-809: My son has the following mutations: 1717 1g --> A (class I mutation) as well as s549R (class II mutation). “1717 1g --> a” is a class I mutation. More precisely, it is a splice site mutation which, however, triggers a stop codon. Is PTC 124 effective with this kind of mutation? The other one is a rather rare class II mutation. Provided that a pharmacological drug for the d508 mutation will be developed in the future (e.g., VX-809), could this drug be effective with the S549R mutation as well?; 24.03.2009

Probiotics: Hello, I recently read about the positive effects of probiotics. A Russian researcher wrote about their positive effects on the immune system. I wanted to ask about probiotics and CF. Can one take probiotics for an extended period of time during the winter months? Is it advisable to take probiotics on a regular basis during an antibiotics therapy? Many thanks for the answer, Ingrid; 24.03.2009

Percentage of CF patients in EU countries: Hello, I am curious about whether the percentage of CF patients in EU countries (examples: Germany, Czech Republic, Netherlands, Belgium) is roughly the same everywhere in relation to the total population. Fictional example: Country X has a total population of 100.000, of which 10 people have CF (i.e., 0.01% of the population). Country Y has a total population of 10.000. Can I assume that the percentage of CF patients is 0.01% here too (i.e., 1 person), or does the it vary significantly? Many thanks for your effort.; 24.03.2009

Allergy Aspergillus: My 16 year old son has CF. He is allergic to the mould aspergillus. For that reason, he has very high IgE values (8200). His lung function is poor, he feels tired all the time, he coughs a lot. He loses weight because he has no appetite. In the past, he was treated with prednisone and that decreased the values of IgE. Now he is again taking prednisone 2x30 mg per day. He also had 7 injections of Omalizumab. But now the value doesn’t want to drop. What could be the cause and are there other medicines?; 23.03.2009

Maybe CF: My son of 3 might have CF. Is being tired a sign of CF?; 17.03.2009

Not enough weight gain - emptying of the stomach - addendum: Dear Dr. Posselt, Many thanks for your answer, especially the answers to points 1) and 2) helped me further a lot. To point 3) I forgot to mention that my son can eat solid food very well, however this amounts to nothing more than 3 chips, 5 noodles and half of a fish finger. Of course not everything together but in the best case only one of those. A disorder of swallowing or something like this has already been excluded. He normally does not even try new things. An eating therapist did also even give up with him. I am convinced that the problem would be solved if he would ever be hungry. I have stopped to get upset about this - he hopefully will not suck his bottle (which he by the way does not like either) at the table at the age of 18. For me it is important that he is eating and gaining weight porperly. Until now he has just been with height and weight always under or just on the 3% percentile. That the height stays back in comparison to the weight is something new. Many thanks!; 09.03.2009