Topics

Diagnosis
My daughter is 16 years and will have a sweat test done this week. Now I read that this is only an option in young children. Is this correct? Does it occur that the diagnosis of cystic fibrosis is only made during adolescence?
26.01.2009
cystic fibrosis
Why is it that one can not cure cystic fibrosis?
26.01.2009
Elastase, CF and diagnostics
My 2 years old daughter is being examined for cystic fibrosis because she is growing poorly since the age of 8 months. There are no other complaints, but I had noticed before that her skin was tasting rather salty. They found 1 mutation, delta F508. For the other mutation sequence analysis are being done but we have to wait for months to get the result. The sweat test was done 3 times, it failed 2 times and once was a dubious result with rate 49 on the conductance measurement, elastase was fine 490. I wonder if she can have poor growth if the elastase is normal. De pediatrician said to us that it didn’t look good, but after the result of the elastase she said that it wasn’t certain that our daughter was suffering from CF. At this point we are rather confused. How should we think about the elastase and the poor growth? Our daughter is allergic for dairy and egg. Could she have CF but the poor growth not because of CF but because of the allergy? Or has some diagnosis been missed and is poor growth despite the good elastase secondary to CF?
26.01.2009
Infertility
I have 2 sons of 29 and 27 years. Both are not known with cystic fibrosis nor with recurrent respiratory infections. Now it happens that my eldest son has been shown to have a form of CF with infertility. We were quite surprised by this. Do you know this type of CF where a person does not have any complaint but is still suffering from CF?
26.01.2009
How long will it take to have the results of genotype testing
We know that my brother and his son are carrier of the Nordic CF deletion (c394del TT). My partner and I are planning to use ICSI. Because I may well be a CF carrier, we would like to be tested before we continue with this ICSI treatment. We however can only get an appointment with clinical genetics next year. My question is how long will it take for us to have the test results (are we carriers?) so that we know whether to continue with ICSI. Are we talking in days weeks or months? Thank you for your answer.
26.01.2009
Results of I-neb, knowledge ?
Is there more knowledge on the i-neb?
26.01.2009
Flu shot
My son (16 months) has a genetically determined mild form of CF. Fortunately, he is not particularly prone to respiratory infections. Until now, he has only had bronchitis three times, all of which occurred after the three shots. His immune system seems to be weakened substantially by the vaccinations, but to be pretty strong otherwise. Now I am wondering whether the flu shot generally recommended with CF makes sense in his case. Of course, I am scared that he will get an infection which he would otherwise not have.
26.01.2009
Bugs !!
My 16 yr old son has CF. He has been growing Mycobacterium Abscessus for a couple of years and is on intensive eradication therapy (Amikacin nebs, Clarithromycin) He recently also grew Scedosporius - and has now cultured Pseudomonas (again) so is on eradication therapy (Colomycin Neb & Cipro Orally) - but he has been taken off the Amikacin due to the toxicity of using both together. He is relatively well apart from a cough. Does anyone have any comments on the implications of him growing all these bugs together ?? I want to know what to expect and am quite worried. We are lucky to have a fantastic team at our CF Clinic.
26.01.2009
Antibiotic treatment while on chemotherapy
Good morning, we are taking care of an adult patient who is colonised by Pseudomonas and currently receives chemotherapy because of testicular cancer. Is an antibiotic treatment during every cycle of chemotherapy reasonable? I think this might be indicated because of the successive aplasia.
22.01.2009
Therapy weariness
Dear Expert Team, fortunately, our daughter (18) is pretty fit despite having CF; she was diagnosed early and has gotten intensive therapy – inhalation, sports, physical therapy, drugs, etc. Despite Pseudomonas and seasonal aspergillosis, her weight-for-height percentage is above 100. She has been letting therapy slide for some time now; apart from taking pancreatin with her meals, there is almost nothing going on. During the past years, we as parents have made sure she got therapy – reminded her of it more or less, etc. This, however, is increasingly leading to fights or to resignation on our part. Every once in a while at the doctor’s, she is showing some intention to start doing sports again, etc., but she never actually does it then… During rehabilitation therapy she cooperated well, but at home she did nothing. What should we do? Do we just have to wait and see…? Thanks and regards.
22.01.2009
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