Topics

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
CF difficulties
My child is coughing up phlegm, and swabs made by the local pediatrician show staphyloccus epidermidis in the nose. The child has had pseudomonas in the past and is now coughing. Two weeks ago she had Sumamed prescribed when she had a cold. We're afraid that the cough will turn into pneumonia. Please advise us on what to do; we have a checkup in a week at our CF center. We have 2 such patients and are unclear as to how to proceed. What is serious and what isn't? Is it possible that a 2-year-old child would cough without anything showing up in the swabs? Thank you
22.01.2009
Consultation
Hello. I'm 44 years old. Since June, 2007 I have had long-term swelling throughout my body, concentrated in the face and evenly in the area from the knees to the groin. A comprehensive examination was unable to come up with a diagnosis. The biclonal IgG kappa gammopathy was set at 2.5+0.8g/l, and repeatedly low albumin levels at 32.4, with decreased kidney filtration functions and hypoproteinemia. Since childhood I've had repeated infections in the nose and throat, vocal cords and an emetic cough. My mother had an operation for pancreatic cancer. Should I undergo examination to rule out CF, and if so, how? Thank you for devoting time to my question. Best regards, Ivana R.
22.01.2009
Travelling to the sea
Is it recommended for a child (4 years old with CF) to travel to the sea in an airplane? Thank you.
22.01.2009
CF centres
Hello, I'm a mother of a 6-month-old son who has had CF confirmed. Because we are planning to go on holidays this summer, I wanted to know if there are specialized CF centers in Croatia, Austria and Italy. Can we contact them in the event of a worsening of his situation? I have paid for health insurance, but isn't there a card for a patient with all of their records of illness and treatments, so that other doctors can more easily orient themselves? Thank you,
22.01.2009
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