Topics

CF – initial diagnosis during adulthood – sweat test
Hello Expert Team, how reliable are sweat tests for a diagnosis during adulthood? Should it be taken several times if the first result was in the gray area (with this particular machine: 88 – positive; result – 68). Thank you very much in advance for your help. Regards, simmy
15.01.2009
Forest kindergarten
Dear Expert Team, our little daughter (13 months) is a CF patient. She mainly has digestive problems (two intestinal obstructions already). So far, she has not had any severe infections and her lung is clear. Nevertheless, she inhales saline solution twice a day. We are now considering enrolling her in a forest kindergarten. On the one hand, we were thinking of the lots of exercise outdoors; on the other hand we thought that the children might not contract infections from each other so easily. However, we are not quite sure whether there might be an increased risk of germs in the forest. From your point of view, would there be any concerns about a forest kindergarten? Many thanks for your answer.
15.01.2009
Blood sugar check after meals as well?
Dear Expert Team, my doctor told me to check my blood sugar, and I have been doing that for three days now. Is it sufficient if I do that before breakfast, lunch, and dinner, or do I have to check after all my meals as well? Many thanks, leomax
15.01.2009
Information on PTC-124
Hello, I have read with great interest the question of a father of two CF children in Austria. In this question, the study drug PTC124 was mentioned. Could you please provide more information on this interesting medication and scientific approach? My daughter (28yr) suffers from CF, which was shown to be caused by a homozygous deltaF508 mutation. Thank you for your answer, E. Böger
15.01.2009
How to proceed?
Hello, Would like to give you a short account of our situation: Three years ago our daughter (6, CF) was for the first time diagnosed with Pseudomonas a. This germ was treated with an IV for 14 days and a three months´ inhalation with TOBI. After that the Pseudomonas was no longer detectable and the Pseudomonas antibodies continued to be negative. This April Ps. was detected again in one single swab. A treatment with Ciprobay (orally) for 8 weeks followed / in parallel TOBI was inhaled for 3 months. The finding of the antibody control was as followed: One antibody was 0, one 860 and one more than 1250 (I guess 1300); which shows that the immune system this time reacted to the Pseudomonas. This year our daughter had many infections in the paranasal sinus area as well. In June she had a paranasal sinus surgery – it cannot be excluded that the Pseudomonas hid somewhere in this area Since her surgery she has been absolutely free of infections. So far all further swabs were Ps.-free. And this is my question now: How can this increase of pseudomonas antibodies be explained??? Or, should this part rather indicate that a changing of the therapy is necessary? Our doctor is considering starting TOBI inhalation again, and an IV treatment is being discussed also. Lungfunction: FeV1 110% VC >105 % We simply feel very insecure, and we wonder if with a good general condition free of infections such a brutal proceeding is really necessary because of these findings? We are eager to learn your opinion and what you think about this situation.
12.01.2009
CF and diagnostics
With people carrying both a mutating and a normal CFTR gene (i.e., genetic carriers), is it possible to diagnose whether they are carriers even if they do not have CF? Please reply.
12.01.2009
ABPA and greenwood forest
I would like to ask about a relationship between ABPA and a walking in the greenwood during autumn time. I’ve had CF and last years I‘ve acquired also ABPA treated by prednisolon and anti IgE medication (Xolair). Sometimes when I am walking in the greenwood forest I wake up for dry cough. Is such walking in this area dangerous for me or leaves aren’t a problem? I want to ask about swimming. I regularly go swimming in the swimmingpool. Recenly I read some informations about swimming and asthma. Can swimmming support worsening of my ABPA. Is there some relationship between swimming and asthma? Thank you very much. Ingrid.
12.01.2009
Peg pain
I’ve been feeling pain around my button for some time. What can I do about it?
12.01.2009
Arthritis
At about 11 years, my daughter developed a mild form of arthritis in her knee for the first time, which was ignored by doctors initially. It became more and more severe over time, and by now it is particularly bad and occurs in all joints after each i.v. therapy. When she took strong pain killers, her intestine became paralyzed. What would be your advice to my daughter? Also, are there a lot of CF patients with this complication, and how do they deal with it?
12.01.2009
Sinus Problems
I am 19 and have had many sinus surgeries...each time I get sick is due to the post-nasal drip into my lungs causing them to get inflamed and irritated. For the past couple years my sinuses have started bleeding, mostly at night to the point where I will wake up choking on the heavy drainage it causes to my lungs. I was wondering what I should do? Surgery hasn't helped, are there any holistic avenues such as eating certain foods?
12.01.2009
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