Topics

Standards of quality of CF-centers
Hello, as it came repeatedly to negligences in my treating CF center, I am in general insecure, if I am still in good hands there. I have the feeling to point at all things myself, and that only in case of request it is thought about something. As long as it concerns things, where I can intervene, that is still all right (as in case of accidentally wrongly prescribed drugs), but concerning some questions, I do not really have the specific knowledge. How do I recognize as a patient, if my CF center follows the actual guidelines (in case there are any), e.g. concerning the frequency of doing certain investigations or concerning hygiene? Is there a ranking of CF-centers, so that one can probably decide to have a longer way in order to have a better treatment? Many thanks for your answer in advace.
27.06.2011
Testing of water / water processing
Hello, we are planning a holiday on the isle of Corsica with the camper. As our daughter suffers from CF, we are going to rent a complete new camper which is in a good hygienic condition. How can we test the fresh water on site and what do you recommend concerning the processing in the tank? Are there any good additives resp. some, which you could recommend to us? Many thanks for your answer!
27.06.2011
cystic fibrosis and magnesium
Hello, I am the mother of a son, 15, who has cystic fibrosis. In recent months, he has been supplemented with magnesium and vitamin B6 because tests showed a deficiency (genetic?) in the transport of Mg to the cell. A pediatrician specializing in treating children with pervasive developmental disorders with magnesium told me that a colleague is asking himself the question wether there could be a relationship between this deficit and that of the CFTR protein. Do you think this could be a possible track for research? Sincerely,
21.06.2011
Foods and bacteria
Are there foods to avoid in the case of cystic fibrosis? I think especially of bacteria and cheese such as Roquefort. Our CF Centre asks us not to keep water in the refrigerator more than 24 hours. What about food, such as a dish ?
21.06.2011
Hypertonic Saline
Hello, My daughter is currently very congested, the CF doctor told her that she is not infected but unable to clear her airway due to a very thick mucus. She feels trouble breathing, she coughs a lot and even more during the night or feels an extreme fatigue. She has been performing RhDnase nebulization (Pulmozyme) for several years and apparently it is not efficient any more. I've read that hypertonic saline may be used to replace. What do you think about it and how is it administered (I think it's also aerosolized but I'm not sure) ? Thank you in advance for your reply.
20.06.2011
swimming
We will soon visit friends who have a new pool treated not with chlorine but with salt. They certify that their water is very clean but I do not know if my daughters (both have CF) can bath safely. The hospital that follows them has no clear answer to me, and it seems that there are no studies on this subject; In advance thank you.
20.06.2011
caring for a russian patient
Hello, Could you please tell us what steps to be done to bring a Russian patient for analysis and treatment in a French clinic/hospital. An association in St. Petersburg fully supports moving and medical expenses. Thank you very much in advance, Sincerely,
20.06.2011
Compound heterozygous mutation delF508/R347H
Hello My daughter is currently pancreatic sufficient since birth. I guess that when the patient is compound heterozygous (mutations deltaF508 and R347H) the mildest mutation gets over the other one Will it remain so, or do studies / statistics and knowledge on the R347H mutation phenotype show that over time the pancreas may no longer assume its exocrine function? (I do not mean risk of diabetes). Thank you in advance for your reply Cordially
20.06.2011
Sustainability of pancreatic sufficiency in case of compound heterozygous mutation F508del/R347P
Hello My daughter is currently pancreatic sufficient since birth. I guess that when the patient is compound heterozygous (mutations deltaF508 and R347P) the mildest mutation gets over the other one Will it remain so, or do studies / statistics and knowledge on the R347P mutation phenotype show that over time the pancreas may no longer assume its exocrine function? (I do not mean risk of diabetes). Thank you in advance for your reply Cordially
20.06.2011
Familial difficulties
Hello. My 7 month old daughter is affected by cystic fibrosis. She was operated on day 1 for an atresia and hospitalized several times, including because of "mucus jam". How could we react when the family is heartless or, worse totally fled, or strikes us as "you radicalize your words that are extremely violent (note that I just have remember them that we have to wash hands regularly, and especially after going to the toilet - thing that some don’t do -. I don’t understand what could be shocking because for me, it is a fundamental rule of hygiene. Furthermore, I said it calmly). Apart from this episode, we have to face with the desertification of our family, or with his misunderstanding. In this way, by example, for the mucus jam : "but all children could be constipated". Despite all the explanations of the world, nothing to do. I am aware that everyone reacts in their own way face to the disease: "escape, denial of illness etc" but could you tell me what would be a good attitude to adopt? Perhaps ignorance, but ignorance is a very cruel feeling.... Thank you in advance for your reply.
20.06.2011
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