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Topics
- negative sweat test
- I have a 4 year old child, born at 34 weeks with caesarian section with no health problems. I was always on the lowest development curves. Both parents are 1.65m tall and we were told not to worry. Last year the child had a pneumonia and the doctor recommended a sweat test, which was negative. I did a blood test, which was negative as well. Since the age of 2 the child receives inhaled medication for asthma. Should we do anything else to rule out CF, since the child continues to be outside the curves?
- 23.01.2012
- negative sweat test
- I would like to ask if an child with asthma and negative sweat test must be tested in some other way, in order to exclude CF as a possible cause for the slow development of the child.
- 23.01.2012
- CF and IRT results
- Our daughter is 30 days old. We did an IRT test twice. The first result was 195 and the second one 117. Based on the above what are the chances for our daughter to be a carrier of a CF mutation, or for her to suffer from CF. We will do a sweat test and DNA testing. We, the parents, do not know if we are carriers.
- 23.01.2012
- Borderline sweat test
- What does it mean if the sweat test is borderline for a 4 year old child?
- 20.01.2012
- Progress of CF, stomachache & physiotherapy
- I follow all the instructions, but I do not know if the physiotherapy I do to my child is enough or correct. What are the symptoms before the health of my child is severely affected? Is it true that stomachaches is a major symptom? It does not happen often and I am not sure if it truly happens, or my child uses it to avoid doing stuff.
- 20.01.2012
- Cf heterozygote carrier
- After CVS testing the baby is heterozygote carrier of CF. Will it be born ok, or are there any other testings to be done?
- 20.01.2012
- Experinces with a rare fungus
- Can anybody tell me his experience with the rare fungus "Trichosporon asahii"?
- 17.01.2012
- Mutation Class Assignment for Q493R
- My daughter carries the delta508 and a rare Q493R. Can you please help me understand the mechanical defect of this protein caused by this sequence variation Q493R. My best guess from literature is that it is Class III (defective channel regulation). Thank you!
- 16.01.2012
- VX770
- I know although VX770 is probably soon to be licensed it is still very early days. However, what I have read is that this should considerable help a CF patient with G551 gene. PRESUMING this medication opens the 'gate' it is said that although not a cure this should control CF in the same way that Insulin controls Diabetes. Again PRESUMING this works as hoped should this keep CF under control? I am also confused as if a person only has one CF gene then they do not have CF. Therefore if a person with for example the common gene and G551 should this still control the CF? Also if this medication works as forcast by Vertex and together with the combined medication for F508 Delta when eventually available are we hopefully looking at the majority of people with CF will live normal lives although not cured and in time require much less 'physio etc. as at present? I look forward to your reply. With thanks.
- 16.01.2012
- ABPA
- I am 31 years old and have CF and diabetes. At 13, I had ABPA for the first time and was treated with cortisone. I had the second ABPA (RAST class 4) in fall 2006 and was treated with Decortin H® (prednisolone) for one year, starting with 50mg. My current IgE is at 519; in addition, the specific IgE shows RAST class 3 concerning. A.fumigatus. My FEV1 has dropped by 12% (now 71%), particularly the small airways by half (MEF 25 is at 25%, Sultanol®/salbutamol does not help much). An HRCT has not been done yet. I was told than an X-ray, which was done after a pneumonia that has worn off after an i.v. therapy, did not show any “discrete infiltrates.” Which therapy would be appropriate now? Would a cortisone pulse therapy be an option (50mg for three days)? Should I take Sempera® (itraconazole) as well? Many thanks in advance for your effort.
- 16.01.2012








