Sweat test
Hello, I want to ask about my 9 month son. I think that he is producing a lot of mucus and his sweat is very salty. Should I ask for chloride sweat test? I have not realized any other CF symptoms. I want to ask more if my GP will do this test or do we have to visit a specialized place?
Water supply
Hello, we would like to use our well for water supply. Is this water suitable for a CF individual? After a normal investigation in Sweden, we were told that it has drinking water quality. Thanks
Hallo, Our son (18) suffers from cystic fibrosis and allergic aspergillosis. The following questions lead to discussions many times: 1. Can cheese which is refined with molds (e.g., blue cheese) be recommended for a CF individual? 2. Is the mold which covers older cheeses, refined with molds, more likely to be toxic or can this surface mold be considered as being suitable for consumption? Martina Kennel-Haas
Physiotherapy in CF
Dear expert team, I am interested in the different kinds of physiotherapy in CF and would like to know if there are any studies about the effect of hippotherapy in CF. In addition, I am interested in the reflectoric breathing therapy. Which advantages does this kind of therapy have compared to the “normal” therapy, autogenous drainage, turning-stretching positions etc.? Many thanks and best regards!
Dear expert team, I have a daughter with cystic fibrosis and now I read that her fertility is clearly reduced to 20 % in comparison to healthy women. Does that mean that she only has a chance of 20 % to become pregnant or is the chance reduced by 20 %? Thank you for your answer in advance.
Genotype F508/R553x, Gentamycin Inhalation
Hello, My 30-year old son has the genetic constellation delF508 and R553X. He inhales since approx. 20 years Colistin, after his Pseudomonas showed resistance against Gentamycin. Could he, nevertheless, inhale with Gentamycin? According to Professor Kerem, the substance PTC 124 is also effective in nonsense-Mutations. Is there a possibility of prescribing the substance to my son? With thanks and friendly greeting Barbara Schoening
Rainwater collector
I am father of a 9-months-old daughter with CF. We are building a house at the moment and plan to install a rainwater collector for the new house which should provide the toilet flush with water. Is rainwater problematic concerning the colonization with Pseudomonas? Is it more advisable to use normal drinking water for the flush? Many thanks for your help, Yours sincerely,
Cystic Fibrosis and Scoliosis
Im looking for field reports or studies regarding Cystic Fibrosis associated with Scoliosis. My 15 year old daughter developed a severe scoliosis (70 degrees Cobb angle) after resection of the right upper lobe of her lung. Doctors do recommend Spine-surgery. Does anyone have information about studies or experiences related to these topics? Are there any hospitals / centers in UK or Germany experienced in this?
Zithromax [Azithromycin] / Bilirubin
Hello, Recently, the doctor of my CF outpatient department was very surprised about my Zithromax dosage. I take 500mg [milligram] three times a week (on Monday, Wednesday and Friday). He said, this dosage is too high, all other patients in the outpatient department would only take 250mg three times a week. But I know from other CF patients that 3x500mg is taken frequently. Then, the doctor said that he wanted to control the liver enzymes. GOT, GPT, etc. is fine, without anomalies. However, the bilirubin is 1,9 (instead of max 1,2).Now he wants me to take only half as much Zithromax than before, namely 3x250mg. But I don't see the point in reducing the dose of Zithromax to then end up catching more infections.Is the value of the bilirubin really so very critical (especially since all other values are okay)? And are there any objections regarding the former dose respectively?Thank you very much for your answer.
Convalescent care with MRSA
How do I get convalescent treatment despite the suffering from MRSA? My nine years old daughter has CF, PSA probably since she was born, MRSA since two years. We, the parents, are physically and mentally down, our nine years old is overstrained by this situation and her school marks have deteriorated, our little one (7 years old) is suffering from pyrosis, fear of loss, nightmares, etc. We have been advised against going to the Black Sea in order to avoid further colonizations! SOS we need a “time out” urgently.
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