Topics

Spirulina
Hello, Could you tell me if Spirulina Bio, powdered, could be beneficial for my CF adult daughter? Is there a risk of bacterial contamination with this dietary supplement? She has an Aspergillosis. Thanking you in advance. Best regards.
06.06.2016
Cough
Hello, My 5-year-old CF daughter has very big coughing fits when she wakes up and the rest of the day she does not almost cough. Her mattress is lifted, the physio says that it is very high (not down in lungs) and her bacteriological exam is negative. Do we have to establish particular measures? To intensify the physio? To inhale pulmozyme®? Thank you.
06.06.2016
Frequencer by Dymedso
The 26-year-old CF patient Louis Plante had to quit a concert due to extreme cough, after he stood near a loudspeaker. Afer this event, he developed a device, that induces low-frequet soundwaves for drainage of the airways. After 4 years of research and development, Dymedso brought the acustic airway-drainage device "Frequencer" on the market (www.dymedso.com), that assumingly reduces the viscosity of the sections of the airways and by this improves the transport of mucus. My question: Is there any experience in Germany with the expensive device (12 000 Euros), has it been once tested in a CF center respectively how are the studies judged that are posted on the internet site? Are there other trials, to use sound waves or ultrasound waves for losenig the secretions? Even kidney stones are destroyed by sound waves!
04.06.2016
Pseudomonas
My daughter (7 years old, CF), is fighting for one year her Pseudomonas infection. We have already done two i.v. therapies and she is still inhaling with Colistin. Under the therapy, the swab was about 4 months ago positive for P.a. Is there still hope after such a long-term colonization, that one will again get rid of it? Or can one now assume, that it is chronic?? Should one do another i.v. therapy if the next test will be positive again? The last one has been done about 4 months ago. Or should one inhale Colistin and wait?? She is inhaling dry powder. Is it proven, that humid inhalation is more effective?? I thank you.
04.06.2016
Do CF and superfoods get along well?
Hello, My husband is suffering from CF and I would like to create our food even more consciously, i.e. to incorporate natural anti-inflammatory substances. Can one make a statement in how far superfoods, e.g. goji berry, salmon oils, curcumine are suitable for this? I am worrying that it could come to interactions or damage of the liver. Can you recommend other substances? Many thanks and best regards, PS
04.06.2016
CF-symptoms after long-term exposition to toner particulates at work
After I suffer for 2 years from increased mucus production in the throat, I have for the last 3 months persistent cough and asthma-like symptoms. X-ray, CT of the lungs/bronchi, diverse allergy tests, exercise stress test and a gastroscopy did not bring a pathological finding. Eating increases the mucus production. I have already lost 9kg of body weight due to the fear of this mucus. Can here (without a genetic predisposition) be the illness of CF underlying?
04.06.2016
Combination of the mutations c.650A>G and F508del
Dear expert team, In the frame of the genetic counseling the named mutations have been found in my boyfriend (F508del) and in me (c.650A>G). We are aware of the fact, that in case of family planning the probability is 25% to get a child suffering from CF. 1) Do you know anything about this combination? 2) How could the course of the illness be? 3) C.650A>G is a very rare mutation and we have been told, that it could rather be classified as to be mild. I have read in this forum, that a mild mutation would be essential for the prognosis. Could you make a statement concerning this concrete combination? I thank you very much for your answer.
04.06.2016
Sleep and stomach pains
Hello Our son is 8-months-old. He was diagnosed at birth (deltaF508) and presents especially digestive symptoms improved by Creon (approximately 9000 before cq meal). We are very bothered because he never had a complete night since his birth. He falls asleep alone in his bed but has at least 2 night awakenings (until 8 or 9 when he is sick - cold -) We think that he has stomach pains: he's often very constipated (we give him Hepar in the day) and he has a lot of gases especially at night. What could we do? It is getting tiering for him and his older sister with whom he shares the room and als for us. We read the previous answers on e-corn but they are rather older. Thank you for your advice.
04.06.2016
Insulin
A doubt about insulopenia was expressed concerning a child a little over 4 years old following an OGTT (oral glucose tolerance test) one year ago. It was concluded that it has glucose intolerance without diagnosis of diabetes to date. Would the risk of diabetes be decreased if that child received a small dose of insulin every morning? Should it be mandatory that blood sugar is measured before an insulin injection (regardless of dose)? Is there any risk of insulin dependency? Is there a risk to take insulin too early in case diabetes would be diagnosed in a few months or years? And finally, what about a possible oral treatment with repaglinide for example? We thank you in advance for your answers.
04.06.2016
Fever in a 11-months-old child
Dear expert team, My daughter is 11 months old and has been diagnosed a few weeks ago. Now she has slight fever (37,8°C)…when shall I present her at the CF center? What should I do now? Many thanks! S.S.
13.05.2016
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