Topics

Avoid sick people
Hello, Our 7 months old son has Cystic Fibrosis and in times of epidemic influenza, colds and gastro-enteritis, we were advised to avoid our son contact with sick people. To what extent should we consider this advice? Should we refuse to invite people with colds? Should we invite them but they put on a mask? Can we invite them when our son is asleep and therefore not seen or do the microbes stay with us? Should we just avoid people having flu or bronchitis? A person with a runny nose? We want to take all possible precautions for our son but do not go overboard! We thank you warmly.
26.03.2013
Gastric problem
Hello, My daughter has always stomach problems that have worsened recently. I wonder if an infection in the esophagus (examination in progress) may cause a decrease in breathing because antibiotic treatments for her lungs turn out to be not effective anymore. Thank you.
26.03.2013
KALYDECO®
KALYDECO® is beneficial for the mutation G551D and some other mutations causing the same problem. I read that the KALYDECO® would neutralize gastric acidity. Am I to understand that this positive effect would apply also to the G551D mutation (and similar mutations) or probably to all patients with CF? Thank you in advance for your answer.
26.03.2013
antibiotic treatment
My CF child has already had 5 Port-A-Caths (PAC), 4 of them were removed because of infectious problems. The last one was really the last one because all his vascular network was totally sclerosed. Unfortunately, this PAC has been moved accidently by his school teacher and it was also removed. During the last hospitalizations for bronchial infection, the surgeon has successfully put a picc (peripheral inserted central venous catheter) line. He’s now again hospitalized and an attempt to put a picc line was made 3 times at different sites. Because it was impossible, a peripheral vein was searched but with no success. The pediatrician doesn’t want to try again a treatment by a vascular way and proposes a new treatment, not yet validated. All the intravenous treatment is now inhaled with an e-Flow nebulizer. This is the listing of his antibiotics: ceftazidime, IV tobramycin, tobramycin for inhalation, colistin and by an oral route sulfamethoxazole and azitromycin. I am really anxious with such a treatment because we know that in cystic fibrosis intravenous antibiotics are the only treatments with the hope to cure. Do you have other solutions to propose? Thanks.
26.03.2013
Asbestos
Hello, We are parents of a girl with CF, aged 2 years. We will move soon and have discovered that the roof of a house extension (7m2) is covered with corrugated fiber cement containing asbestos as well as a vent in the attic. The diagnosis shows that it is in good condition, but we wonder if we still need to remove it (of course by an approved company) or if a formwork may be sufficient. Thank you for your response. Best regards.
26.03.2013
Mutation carrier and pregnancy
I am 18 weeks pregnant (normal conception) and read about CF in the Internet. My gynecologist did not prescribe the relative test because he thought it was unnecessary. I did it, nonetheless, and the results were positive for 7t/7t and negative for the other 49 mutations. My gynecologist recommended that my husband should be tested as well, but he thought that the danger for the baby to have CF was improbable because my husband had to have the exact same mutation as I. We are expecting the results, but by reading the Ecorn site I realized that if both parents are carriers of a CF mutation then the baby may have CF, even if the mutations are not the same. If my husband is a carrier, do I have to do an amniocentesis?
25.03.2013
Rare mutations of CF in pregnancy
I am 18 weeks pregnant and carry the mutation.Arg31Cys (c.91>T), while my husband is carrier of the mutation p.Tyr301Cys. I am going to have an amniocentesis. Could you give me some information about these mutations? If the embryo inherits both of them is there any data about if and how will CF present?
25.03.2013
Pseudomonas
My son is 4,5 years old and is sensitive to bronchitis and bronchiolitis since he was one year old. Recently he was detected with pseudomonas. His case does not appear to be cystic fibrosis, since he is a very tall and heavy child (118 cm tall – weighs 27 kg). The results from the amniocentesis during the pregnancy and from the screening test after birth were negative for CF. Despite all this, we are going to recheck the sputum culture and I believe the results will be positive for pseudomonas again (we are still waiting) and the doctor urges us to do a sweat test. How worried should we by the presence of pseudomonas in the lungs in a person without CF? Our doctor recommends a bronchoscopy but I have reservations. Thank you.
25.03.2013
Borderline sweat test
My four year old son has low growth issues. His height is 1.03, his weight 15.8 kgr. In height he is in the same percentile consistently, whereas he has dropped from the 75th to the 25th weight percentile. He has been ill 4 times with a viral infection. He has never taken inhaled medicines and just one antibiotics. In each case he had cough and sputum, and the last time the cough lasted a month with no other symptoms. We did a general stool test with negative results. As a newborn we did an IRT test, which came out negative (45.5). Our paediatrician rules out the possibility for CF and thinks that the low weight is due to the fact that the boy does not eat much. The blood tests were within normal limits. The only raised value was 13 for eosinophiles. An allergy to milk was detected as well. The first sweat test was 44, the second 30.5 but we were told that there was not much sweat. They recommended a retest after a month. I would like to ask what do you think about the possibility of CF?
25.03.2013
Administration of Bronchitol®
Hello, I tried Bronchitol® (active substance: mannitol) and I am rather content. However, the daily inhalation is very exhausting and time-consuming, as I have to vomit frequently at this due to the disgusting taste. This has not gotten better even after several weeks of usage. I asked in the CF-center if it would not be possible to take the drug either a) according to the need (thus in case of an increasing amount of mucus) or b) half of the dosage, thus 5 capsules in the mornings, 5 in the evenings. What is your opinion about this?
25.03.2013
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