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Prognosis after rectal suction biopsy
Thank you for answering my previous question about the diagnosis of cystic fibrosis. Meanwhile a rectal suction biopsy was done. Also this did not bring a clear result. The amount of CFTR protein was low but there was some residual function said our pediatrician who got this answer from the CF doctor. The doctor says it’s either no CF or a very mild form of CF that my daughter can live with until the age of 70 or 75. Now everywhere I read that even mild forms of CF can have a severe course. To what degree can a doctor state, after result of rectal suction biopsy, that it is a mild form of CF and that the prognosis is always really good? Could a rectum biopsy taken in 20 years time give a different result or will the CFTR protein always have a considerable residual function? I really cannot find a lot of information on this. My pediatrician couldn’t answer me at all. She says she is not sufficiently specialized. Also I wonder how it is possible that a rectum biopsy would yield an abnormal result if no second gene mutation is found. Can being a carrier result in an abnormal rectal biopsy result?
24.02.2009
PCT 124
Does PCT 124 help in case of cftr dele 2,3?
24.02.2009
PCT 124
Dear expert advice team, I have the following mutations, 508 and R 1066C. Since R1066C is a so-called nonsense mutation: Could you inform me if PCT 124 can be a cure in this case or makes treatment more effective? Is there already a date when this drug will be available? Thank you very much and kind regards
24.02.2009
Sport and crosstrainer
Since 2 months I train nearly daily for 20 minutes on my cross trainer. Until now I didn’t really exercise all that much because I didn’t like it. Strangely enough I now really start enjoying myself. What is best to improve my condition and my lungs? To have short duration maximal exercises or longer duration medium intensity exercise? I am 40 years old and during my training my heart rate increases to 175 beats per minute. Thank you very much for your answer.
24.02.2009
colistin
Hello! What can replace Colistin in aerosols in patients with CF? Colistin can not be found in pharmacies , they say is no longer manufactured, and if there is an equivalent for it and what are the doses for preparing aerosols.
24.02.2009
CF and massive sleep disorder
Dear Expert Team, I was accidentally diagnosed with CF only at the age of 29 and have been suffering from massive sleep disorder for several years. I go to bed at 10 p.m. and get up again at 5:30 a.m.. During the night, I get up four times and have to eat and drink something, and in the morning I am very exhausted. Could this be a sign of a lack of oxygen during the night, or rather too much strain from taking care of my daughter (six years, CF)? Many thanks, leomax1994
24.02.2009
CF and exhaustion on distances greater than 250 meters
Dear Expert Team, My daughter is 6 years and 11 months old and has CF. She suffers from exhaustion on longer distances and I have to cart her in the buggy or carry her. A treadmill test that was not carried out at the CF clinic confirmed the exhaustion, but lung function was ok. The CF doctor thinks my daughter is too lazy to walk, but why does she vomit and cry when I force her to walk? I want to help my daughter, but since I suffer from CF myself and am not allowed to lift heavy weights, it is very difficult for me to manage that every day and not know what is the matter with her. My daughter says her knees keep buckling under her. leomax75 Question from 7.1.09: Dear Professor Wagner, Thank you very much indeed for the quick answer. For four years now, my daughter (6 years 11 months, CF) has been doing intensive physical therapy twice a week for one hour, combined with muscle-building training (long distances by foot, treadmill, etc.). However, she still complains about knee pain. It has been 11 months now and there has not been any improvement despite the walking. My daughter’s belly is bulged out extremely, and she has skew and flat foot. Due to this, an expert immediately recommended a therapeutic buggy for the motoric function, but I am still fighting with the health insurance company about that because the doctor refused to write a statement of support. The X-ray of the pelvis was normal. My last question to you, which is very important to me, is: what kind of other tests could I have performed in order to make sure there is no muscular disease or diabetes at hand? At school as well as in kindergarten, the exhaustion shows as well. If I make her walk, she vomits heavily during the night. Kind regards, and thank you very much for your effort, leomax75
24.02.2009
CF and distances greater than 250 meters (answer)
Please see the Q/A CF and exhaustion on distances greater than 250 meters
24.02.2009
Caucasians
Does CF occur more commonly in Caucasians because they live in remote areas and just meet each other for social activities and procreation? And is this the reason for a higher chance of CF?
17.02.2009
Daughter
Dear madam, sir, We have a 2,5 year old daughter. Since a more than a year she is coughing at night. She got different puffs with asthma medication but they didn’t really help much. Her tonsils were removed and that didn’t help either. She seems to get a cold quite often. And during a cold she has a couple of days of fever. Apart from that, she seems really healthy and thrives well. Could this night time cough and this having ‘colds’ all the time be due to CF?
16.02.2009
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