Topics

Airing in the car / air-conditioning bad in case of CF?
Dear expert team! As we do not have a car, my daughter (21 months, CF) is only very rarely sitting in a car. After the last car ride two days ago, however, she was completely horse and had a strong and coated cough. She was then coughing every night very much and woke up therefore regularly. At the physiotherapy yesterday (hopping on the Pezzi ball) I realized, that she was "bubbling" in the lungs and at each breath I felt/heard wheezing. Today it is better again. My question is: can such a thing occur spontaneously because of the air-conditioning in the car or does it rather have another reason (getting cold or similar things)? Should the usage of the air-conditioning in the car be rather dehorted generally in case of CF patients in the summer? I have to add, that my daughter is in general doing very well and that she coughs seldomly to never, and has no (detectable) mucus! The CF center is very content with her health condition! Many thanks for your answer, Best regards, M.L.
21.08.2014
Colloidal silver
Can colloidal silver be taken for fighting bacteria in case of CF and can it also be inhaled? Is there any recent research?
21.08.2014
Pseudomonas in the nasal lavage
Dear expert team, First of all many thanks for your efforts. As a partner of a CF patient I am already for a longer time silent reader of your expert advice. Now I would like to pose a question for the first time. In the nasal lavage of my wife (CF, 31 years old, FEV1 85%) Pseudomonas had been detected at the beginning of this year, however not in the lungs. After this, she was recommended to do an inhalation with colistin with the Pari Sinus (twice a day). After a short-termed success (no detection of the germ in the nasal lavage), Pseudomonas aeruginosa could however again be detected in spite of ongoing inhalation. Now the antibiotic has changed to "tobramycin". Unfortunately the nose of my wife is markedly irritated (blood in the mucus) due to the long lasting inhalation. Unfortunately we have the feeling now, not to be really taken for serious in the CF center, as my wife has a very good health condition. Now to my question: How high is the risk, that the germ spreads to the lungs? Can something be done inhere preventively? Furthermore, I would be interested in further therapeutical methods that would be sensible in order to eliminate the germ from the nose. Is for example an i.v. therapy sensible? Many thanks for your help, P.
21.08.2014
CF-contact to baby?
Hello, is a CF patient actually allowed to have direct contact to a newborn? The immue system is indeed maturing only over 4 months...in the concrete case the CF patient is only colonized with Staph. aureus, however did already have Pseudmonas in the past. Many thanks for your answer (the baby is not suffering from CF according to test).
18.08.2014
Kalydeco® and body height
Dear expert team, I have already wrote to you once concerning the off-label use of Kalydeco® with my son Till. He is taking now Kalydeco® for 10 weeks. He is 8-years old and has the mutation 1717 1G>A and the gating mutation S549R. Kalydeco® has a very good effect in him without negative side effects having occurred so far. After 10 weeks the FEV1 has increased from 106 to 127, he has gained 2 kg weight and the sweat value has decreased about 85 points!! (115 mmol to 30 mmol). These are in my opinion remarkable results that could not have been expected, from which one can conculde, that the chloride channel is functioning more or less normally. I assume, that these results did not solely occur due to the gating mutation, however, that this effect has also something to do with the interplay of both mutations. Now to my question: my son is per defintion growth-restricted, at the age of 8 years he is only 120cm tall. His brother (non CF) is 2 years younger and practically of the same height. I conclude from this, that his reduced body height is due to the underlying CF. What is your opinion, does Kalydeco® have the potency to influence the body height positively under the mentioned values? I know, there are much greater problems in connection to CF and I "complain" in the meantime on a high level. In spite of this, I would be interested in the effect of Kalydeco® on the body height, especially because my son is suffering from his small stature. I have looked up already for hours in the internet, however could not find anything. Many thanks for your answer
18.08.2014
Breast enlargement with CF
Hello dear expert team, I am 31-years-old, 167 cm tall, weigh 62 kg, FEV1 80%, no children. For about 10 years I have the thought in mind to have my breast enlarged, for one year I have several informational talks with different plastic surgeons and collect diligently all information that can be found in the internet. That is surprisingly not too much. I would like to know which risks are arising from the implants for me especially in case of CF. The implants should be completely under the muscle in order to minimize the risk for a fibrosis of the capsule or other troubles like rippling, double bouble. Is there anything (mobility of the thorax...) that speaks against the location under the muscle that would not "be a problem" in case of the location over the muscle? The implants, that we have chosen, would have a maximum volume of 280ml, therefore not very large. In order to perpare the operation, I will start 4-7 days before and i.v. therapy with the common drugs tobramycin and ceftazidim. I have informed myself in so far that an operation (anesthesia) is better in the course of the day than in the mornings, as I could like this already free the lungs and "get them going". Do you have other things that I could pay attention to or that I could do for preparation? As I have already talked to several physicians, I know that the enthusiasm from your side will also be limited and I understand this. I would just have the operation done as well informed as possible. Many thanks in advance for your knowledge! Best regards, T.
18.08.2014
Test for Cystic Fibrosis
Hello, my question: is the test for CF available in Paraguay? Best regards, Mrs. S.
18.08.2014
Calprotectin and thickening of the walls of the large bowel
Hello, my calprotectin values in the stool are increased, between 115 and 150, furthermore a thickening of the bowel wall in the colon descendens could be detected in the ultrasound. Now it is discussed in the CF center, if an endoscopy of the bowel would be necessary. Are increased values of calprotectin normal in case of CF? Would you recommend an endoscopy of the bowel? Many thanks for your answer, Best regards,
18.08.2014
Hashimoto?
Hello, I have CF, am relatively fit, 24 years old, 173cm tall, and weigh 68kg. My TSH value is 5.02 (ref.: 0.4-4.2), FT3 is at 3.45 (ref.: 2-4.2), and FT4 at 10 (ref.: 8-18). There is a history of hashimoto thyreoiditis in my family -- do these values indicate that this is beginning for me now as well? I have not had any further thyroid tests, but I am frequently very tired. So far my doctors say this is not suspicious. What do you think? Again one thing: would it make sense to take selenium? This is actually not "in the plan" in case of CF?
18.08.2014
Flutter
Dear expert team, I’d like to know the difference between a flutter by Pari® flutter and a Pari® O-PEP. I have been using the flutter, but lost it, and now I can only find the O-PEP on the web. Can I use that too and does it have the same effect as the flutter? I am a 24-year-old CF patient. Kind regards.
18.08.2014
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