Topics

CF despite negative gene test?
Hello, I have a question for you and hope you can help me with it. Our daughter (3 years old now) had to struggle with bronchitis and pneumonia from last fall almost continuously until May/June. Pap smears of the sputum did not provide any conclusions about the reason/germ… She took antibiotics almost constantly, which helped, but the cough and the inflammation always came back shortly after she stopped taking them. She had sudden coughing fits, regurgitated viscous mucus, etc… We inhaled (salbutamol, a cortisone compound, and saline – this helped very well, especially during acute coughing fits). I have to add that my daughter is very delicate and lightweight and has a hard time gaining weight. Celiac disease and lactose were both negative. Fructose was positive, but we have that under control now… We did a sweat test, which was at 66, and another one after that, which was only at 36. Since the symptoms pointed to cystic fibrosis, we had a gene test done, which was negative. Now my question: how reliable is a gene test? Would it be possible that my daughter has CF even with a negative test…? Could it perhaps be a form of CF that cannot be detected with a blood test? The cough, etc. has been gone since May/June… (our older daughter did not go to kindergarten for a while then… since September she is going again…), and now it started again a week ago… Cough (no fever), she gags when she has a coughing fit at night, etc… I hope you can provide some help…?!
19.11.2009
CF and the desire to have children
Dear expert team, I will turn 28 in November, am 1.70m tall, and weigh 45kg. My FEV1 has been stable at 52% for the past 15 years. CF has not been proven genetically but was diagnosed symptomatically. My fiancé is fit as a fiddle except for a thyroid dysfunction. We have good family support at home. I expect to graduate in 2010, and the prospects to get a job in my favourite profession are good. We are now wondering whether this is a good time to get pregnant. Unfortunately I do not know whether I meet the health requirements for a pregnancy. As for permanent medication, I am taking azithromycin, DNAse, pantoprazole and vitamins as well as NaCl and a combination of fenoterole and ipratropiumbromide. Unfortunately my clinic is rather anti-pregnancy with CF, and I am therefore a bit reluctant about getting consultations there. Is lung function sufficient to cope with a pregnancy? Which factors do I need to consider beforehand?
19.11.2009
ESBL (extended-spectrum-beta-lactamase)
My son has CF and has been confronted 2 weeks ago with the diagnosis of ESBL. Do you have any knowledge about CF-patients who got rid of this germ? How dangerous is it for the other members of the family? What about the daily hygiene...flutter, inhalation machine, WC, dishes, etc... Many thanks for your answer
19.11.2009
Spending a school year in Ireland
I am going to spend a school year in Ireland. What’s the procedure with prescriptions and medication in Ireland? (Will I have to pay for the medication etc.)? And how can I find a doctor there who knows about CF?
19.11.2009
Hygienic measures when taking a shower
Dear expert team, when taking a shower, which measures have to be taken regarding infections with typical water bugs? I can imagine that one could easily inhale germs due to the fine jets of water and the fog?! Many thanks for your answer!
17.11.2009
Gran Canaria
Dear expert team, we will go to Gran Canaria for a holiday and are looking for an emergency address there for our daughter (two years old, CF). Thanks in advance!
17.11.2009
Swine flu vaccination after TX?
Dear Expert team, the swine flu vaccine is supposed to be available from mid-October. Should a CF/TX patient get vaccinated, even though there aren’t any studies about this yet? I am quite concerned since one cannot predict any long-term effects in connection with immunosuppression. What is your opinion about this? Thank you for your effort! Kind regards
16.11.2009
ABPA
Our son has aspergillosis. It has already been treated with cortisone, Sempera®, Vfend, the whole range. After the therapy the course was stable for a couple of months. Currently, he has an acute exacerbation. The exacerbation occured exactly one day after having been treated by the physiotherapist in her partice. In the large rooms of the pratice there are some plants in the waiting area. Is it possible that ABPA was triggered by that? Should we change the practice? (the interior cannot be changed since the therapist is not the owner of it and has no influence on it). Thank you for your answer.
16.11.2009
Scintigraphy of the kidneys after transplantation
Dear expert team, I have increased kidney parameters since my transplanation 6 months ago. (Urea 44/ Creatinin 1.63) with decreasing tendency. Because of the proposal of my outpatient clinic, I went to a nephrologist. He could not image my kidneys properly by ultrasound and sent me forward to a scintigraphy. Does the radiation exposure of the investigation represents an inappropriate risk with the mentioned laboratory values, taking into account the increased risk of degeneration because of the immunosuppression, or shall I assent to the investigation? Many thanks for your answer. Best regards,
16.11.2009
Frequency of inhalation
Dear expert team. My daughter, 5, CF, has so far a mild course, only the lung is involved. We do daily 2x inhalations with beclomethasone, salbutamol and sodium chloride solution, additionally usage of the flutter. She is only rarely phlegmy, the last infection was about 6 months before. Every second day she gets 7ml acithromycin. Now to my question: is it necessary to inhale 2 times a day, if she does not have an infection, or is also one time sufficient? I know, that some CF patients do inhale only 1 time, as far as they are doing well. What would be the consequences if we inhale only one time? Many thanks.
16.11.2009
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