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Another question on best care possible
I thank you very much for your answer, Dr. Eickmeier. In the meantime I came again to my mind, how one could protect the lung. It is an amiloride solution. I read somewhere about it and that one has to use it within the fist 24 hours of life. Did you ever hear about this? Otherwise we are prepared well for the case of the cases. Thank you.
11.12.2015
Best care possible
Hello dear expert team, after 5 years we dared once more to widen our family planning. Background: our daughter has been diagnosed to suffer from CF at the age of 4 months, is in treatment since and she is doing very well. She will be 6 years old, soon. Now I am in the 11th week of pregnancy and also in best prenatal care. Until now, we exclude an amniocentesis, as the decision is clear. Now we would like to have good advice and want to know what can we do as soon as the baby is born. Assumingly take heel blood and probably diagnose or not. Probably there is already a hint during pregnancy. In case of our daughter, I had at that time markedly more amniotic fluid and one could see in the ultrasound that she had bulging bowel slings. We just want to have the best start possible, the best care and to do everything that is possible - we do not care about the costs. I have heard once, that one can protect the lung of ill babies with a drug within the first 24 hours of life. We are glad about your advice and hope not to miss anything. The mutations are: delta F508 and a stop mutation. As always many thanks, we are glad that you are there.
11.12.2015
Non pathogenic polymorphisms
My husband was tested for 89& of the CF mutations and no pathogenic mutation was detected. However, three non pathogenic polymorphisms were detected. Why are they in the report, since they do not cause CF? What is their role?
11.12.2015
Acetyl-cystein inject inhalation
Dear team, Is it damaging to inhale for a longer period of time with ACC (acetyl-cysteine) Inject? (on the celluar level?) . In former times there was only the inhalation with the substance. Many thanks.
11.12.2015
Production of mucus after transplantation
I, male, 50-years-old, have undergone sucessfully a double-lung transplantation in October 2013 with the diagnosis of COPD of unclear origin. Both sweat tests that have been performed 25 years ago, had been positive, the genetic investigation of the blood on the 15 most important CF-mutations remained negative. I suffer for about 12 months from a persistent recurrent, massive mucus production in the lungs, that could until now only be treated by regular bronchoscopies incl. lavages for a short period of time. I inhale daily with rh-DNAse, amphotericin, ipratropiumbromide and 6% NaCl. Additionally I use acetyl-cysteine for mucolysis. Furthermore I pay attention to a sufficient amount of drinking (more than 2.5 l a day) and do the autogenic drainage several times a day. What other measures/therapies/drugs could come into question for mucolysis? The mucus is very viscous and sticky, pathologically however totally unsuspicious. Many thanks for all the answers.
11.12.2015
christmas tree
To prepare Christmas days with my CF girl, what is the best: a "real" fir tree or an artificial tree because of the aspergillus risk. Thank for your answer and all answers of Ecorn Cordially
11.12.2015
Ciprofloxacin against Staphylococcus aureus
Hello, my daughter is 7-years-old and had in February the first finding of Pseudomonas. Therefore she inhaled 2 cycles of Tobramycin, after that, it still remained there, so that an i.v. therapy with ceftazidim and tobramycin has been done. Now she has to inhale for one year with colistin. Now the Pseudomonas can not be detected anymore, but a Staphylococcus aureus. It had been treated for four weeks with cefuroxim, now she is told to take every three months ciprofloxacin in addition to colistin with the message, that this would also fight the Staph aureus. In the antibiogram it is not listed and this is not the classical substance, or not?? Does ciprofloxacin has an effect on Staph aureus? Many thanks for your advice. She is taking ciprofloxacin for 5 days now. I am worrying that the Staph becomes an MRSA if it is not fought sufficiently or with a wrong substance. V.m.
03.12.2015
Pseudomonas - inhalation with gentamycin
Hello dear expert team, Pseudomonas has been found in my samples. Therefore I am told to inhale for 3 months with gentamycin (mixture of gentamycin and NaCl solution). For this I got gentamycin solution for i.v. application. Can one indeed inhale this i.v. solution? Nothing is said about this in the leaflet. Is this kind of therapy advisable from your standpoint respectively successful? Many thanks for your advice!
03.12.2015
Staphylococcus
Hello Are there cases of CF patients who, without medical help (antibiotics) were able to eradicate germs such as staphylococcus sensitive to antibiotics? I ask this because my 13-months-old CF child has so far avoided the use of antibiotics against Haemophilus and E.coli that he has eradicated without antibiotics. Also I wonder if this can happen with a Staphylococcus germ or is it too intrusive to be discharged without medical help?
30.11.2015
Aspergillus and Sporanox®
Hello, My daughter had Sporanox® (itraconazole) for 1 year to treat the presence of Aspergillus (blood). The last two months, she showed allergic reactions to this treatment (swelling of the face, loss of hair) that required treatment discontinuation. Last mycology sputum identified the presence of aspergillus and incidental manifestations reappear again: tingling of the bronchi, wheezing, bonchospasms .... There is a priori no substitute for Sporanox®. Have you alternatives to offer and / or suggestions? With many thanks.
30.11.2015
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