Topics

Pseudomonas and Aspergillosis
My 19 years old daughter has been recently treated with IV antibiotics for the first time for Pseudomonas primo-infection. At the end of the antibiotic treatment, she was diagnosed with aspergillosis (presumably ABPA) with high IgE levels (1500). After intitiating treatment with oral steroids, IgE went down to 1000 Ui/l. I have the following questions: -Is there a risk of ABPA flare when decreasing the dosage of oral steroids? -Is there a risk of recurrent Pseudomonas infection? Do steroids promote infection (my daughter has increased sputum production these days)
25.11.2014
Correctors and germs
Dear expert team, supposed one of the new drug combinations e.g. by Vertex would be suited for a correction of the homozygous Fdel508 defect, would encourage the cells to take up their tasks to at least 10% until e.g. 40%, and would result in a similar improvement concerning FEV1 and anti-inflammation as Ivacaftor® does for the so-called celtic mutation. Then what about lungs/respiratory tracts colonized with germs? Less mucus and accordingly more "normal" function = degradation of germs and/or fewer new infections? Or will the problem of the destroyed tissue remain due to the initial exposure?
25.11.2014
Mutation 1717 1G-A homozygous
Dear expert team, our son has the above mutation. Are there possibly any insights in the context of a study by Vertex or others? Which class does this mutation belong to definitively (since I’ve seen it assigned to various classes), and if it is a splice mutation, what does that mean? Your answer will be greatly appreciated. Many thanks in advance and kind regards.
25.11.2014
Pseudomonas aeruginosa with excessive mucus formation
Dear expert team, due to an infection with a strongly mucus-forming pseudomonas, the last two times I was in hospital for 5 weeks for an i.v. therapy with two antibiotics (Fortam®/ceftazidime & Amikin®/amikacin; colistin & Ciproxin®/ciprofloxacin). Both times, after 10 days, a resistance and fever developed, and I had to start over again with a different antibiotic for 14 days. After the 5 weeks, however, I still had a lot of secretion and cough, and it only got better after about 3 months of inhalation therapy alternating between Cayston®/aztreonam and colistin. I also have allergic asthma and am taking 10mg prednisone. My FEV1 was still at 52% a year ago and is now at 35%. I am 52 years old and have only needed five i.v. therapies so far. Is a prophylactic i.v. antibiotic therapy advisable under these circumstances, or would I then have to reckon with fever and a longer-term hospitalization again? How could that be avoided? I read that there are antibiotics that inhibit communication with each other; which ones would that be? Many thanks for your help.
25.11.2014
He CF - she asthma
Hello, is it a health risk for a CF patient if his/her partner has mild asthma? Does the partner with asthma have to be put on par with the partner with CF?
25.11.2014
Nasal vaccine despite colistin inhalation
Hello, can I have my child vaccinated with the nasal flu vaccine even if he inhales colistin? Many thanks.
24.11.2014
Why waiting instead of treating?
Hello, a sputum sample has been collected from my 7-month old baby last Sunday because of a greasy cough and a runny nose. Our next medical visit is planned on the next Thursday and treatment is only based on nasal irrigation with isotonic saline and acetaminophen in case of fever. I am anxious about a possible infection and disease degradation between these 2 days. Why waiting instead of treating?
10.11.2014
Calories from gummy bears?
Hello, CF patients are told to eat more calories, so far so simple. Does it play a role in which way I take the calories, via wholefood/ bio wholefood according to Dr. Bruker, via fast food from McDonalds or via much malt drinks, gummy bears and soft cheese? Best regards and many thanks for the information! F.
10.11.2014
Calory need in case of normal lung function
Dear expert team, does a CF patient with a normal lung function (same values as a healthy person) have the same caloric requirement of 150% as a severly ill CF patient? It does not seem logical to me, as the breathing work in case of patients with a normal lung function is markedly lower. Best regards and many thanks for the information! T.
10.11.2014
Meconium
My 13-year-old daughter has recently been examined several times because CF was suspected. She had a lot of lung infections with Pseudomonas etc. Shortly after her birth CF was also suspected (or Hirschsprung) because she did not release the meconium. After her birth she stayed 1,5 days in hospital. When we came home she still didn’t release meconium. They hesitated to take her back to the hospital, but because she looked rather well, they postponed it. After a day a little bit came, but it was normal baby stool. I always thought they made a mistake at the hospital. It was quite messy at the department and maybe they just forgot to take note whether my daughter made meconium or not. Is it theoretically possible that a child only had ordinary baby stool and no meconium? To me it doesn’t seem possible but because of the current suspicion of CF I start to doubt it.
10.11.2014
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