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Aerosols and contamination
Hello, My 7 years-old CF son is treated with nebulised RhDNase. He is using a disposable jet nebuliser (PortaNeb). Recently, 3 different bacteria have been found in high quantity in his sputum: Stenotrophomonas maltophilia, Rhizobium radiobacter, and Chryseobacterium indologenes. Fortunately, they have been eradicated, despite their resistance, with an oral treatment with ciprofloxacin and cotrimoxazole. On one hand, our CF Centre, thinking that these bacteria came from the nebuliser, has stopped the RhDNase treatment. From this date our son shows difficulties to expectorate and coughs more. On the other hand, people renting the nebuliser think that a microbial contamination from the nebuliser is impossible because their devices are systematically disinfected between rentals, because the device of my son was new, and because it was disposable. Moreover, I disinfected weekly the compressor with wipes impregnated with detergent product. At last, the hospital microbiologist (another one that the one of the CF centre), who is regularly in charge of the microbial evaluation of my son sputum, thinks that the 3 germs are environmental bacteria, found, like Pseudomonas aeruginosa, into the ground. These bacteria would be found in the more severe patients or in patients colonised with Staphylococcus aureus (my son is colonised since 18 months). She also said to me that Stenotrophomonas maltophilia and Rhizobium radiobacter were emerging bacteria in CF. She thinks that microbial contamination is not linked to the nebuliser, but maybe because of my son's practice to scratch the ground with his fingers (we are living in the country), and to bite one’s nails, even if his hands are regularly washed. I would know who to believe, knowing that the practitioner of the CF centre is not favourable to aerosols.
02.02.2011
Search for a similar genotype
Hello my son was diagnosed CF at birth. His mutations are 508 del F and P5L. 3 sweat tests showed very diferent results (from positive to negative). He’s regularly followed in a CF Center, is today 3 years of age and luckily does not present any symptom of the disease. Is there an identical genotype in your archives? May symptoms of the disease occur late?
02.02.2011
contact with CF child
My youngest daughter has CF (1 year old). My oldest son does not have CF (3 years old). Is it in any way dangerous (meaning : he can transmit disease) if my non-CF son plays with another CF child (with cough and seemingly ill). Could it be that he transmits the bacteria and in this way could infect my CF daughter? Can you express the risk in a percentage if this is an extra danger?
02.02.2011
boiler feed water
Is there a risk for CF patients to use a boiler feed water container (for dishwashing, washing hands)? I understand that this is a non-moving water recipient.
02.02.2011
Disinfection
Hello. My 14 years old son is currently treated in a research protocol with inhaled bromure tiotropium, 2 puffs each morning. It’s just like inhaled salbutamol. When I have asked about disinfection of the mouth piece of the pressurized metered-dose inhaler (pMDI), the CF Centre staff said that, like salbutamol pMDI, no disinfection of the mouth piece was required. I am surprised. Even if the bacteria are those of my son, they probably stay on the mouth piece with a possible risk of re-contamination (since September, he is treated each month with antibiotics for a Staphylococcus aureus. If this Staphylococcus is always present on the mouth piece, he will never get rid of it). For instance, if a disinfection of the flutter, only used by my son, is recommended, it’s surely to protect him against his bacteria. Thanks to give me the best way to do.
02.02.2011
Changing germ situation
Dear ladies and gentlemen, I have for a few month again and again the Haemophilus parainfluenza in the sputum result, additionally further germs, which change however permantently and do not reoccur regularly even without a treatment, such as Burkholderia gladioli, agglomerans panloca, stenotrophomonas. From the classical medical point of view there has until now not been a comment on the germ situation, as it can not be explained why the found bacteria change regularly. My question: Does it make sense to fight the Haemophilus in order to avoid further colonization of bacteria or is it "normal" that one simply waits how the situation develops? How does a possible treatment look like? Many thanks!
02.02.2011
Adolescence
Dear experts, our son suffers from CF, a benign course, is of normal height and weight. Since he has been 14 years old, he slighted his therapy more and more, in the meantime he is 21 years old and is fortunately still quite fit, FEV1 about 80%, in spite of zero therapy and zero sports. Even so he visits his routine investigations (he takes enzymes, vitamins only sporadically). Can we hope that this runs still under "delayed puberty"? We are asking ouselves if this would change ever....
02.02.2011
Care
What are points of attention for care and follow up of people with cystic fibrosis
20.01.2011
Does compressed air dry out the lung / ABPA
Hello, I want to ask 2 questions in behalf of my boy-friend, who is 28 years old and suffers from CF. For a few weeks, he is for the first time in his life under oxygen therapy (24 hours) and has to adapt himself additionally 5 hours a day to a compressed air device, in order to bring the C02 value down. What is responsible for his bad clinical condition in the first row - besides the chronic germ Stenotrophomonas for 1 year - could not be revealed clearly until now, in spite of detailed tests. The test for ABPA has been borderline however and he gets voriconazloe and cortisone in addition to the actual IV-therapy. 2 questions: -In the oxygen tube, water is collected therefore there is the question, if for hygienic reasons an abandonment of the aquapack would make sense with 1l/hour, but in case of using the compressed air device - which is anyhow inconvenient - this could be probably disadvantageous due to increased drying out? - My friend stays at the moment in the house of his parents from the 1930ties, which is visually in good condition. The physician of my friend however had the suspicion from afar, that he could be exposed to mould fungi there (possibly not directly visible). This is hard to check. In the basement and in the poorly isolated attic, which is wainscoted with wood, possible mould could not be excluded, he avoids however entering those rooms at the moment. How should one behave concerning this problem? Perform mould tests? Could those be paid by the health insurance (probably not)? Many thanks and best regards,
20.01.2011
Prescription of Creon without clear diagnosis of CF
Dear expert team, my son (2.5 months) is in hospital since birth. He has had a permeable small bowel and birth has therefore been induced in the 32nd week of pregnancy. Since birth we have been told by the doctors, that our child might suffer from CF, however no test has been performed yet unfortunately (nor a sweat test, nor a genetic test) and therefore a clear confirmation have not been given. Since today our child gets Creon (8x1 spoon per day), which is according to the leaflet given only to patients with CF, as he has an extremly distended abdomen since the last bowel operation. Now to my question: can this drug also harm in case he does not have CF? I feel that it is no right to give such a drug without a clear diagnosis.
20.01.2011
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