Topics

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
Scandi Shake, AquaAdek's vitamins - where to buy?
Hi, I'd like to buy Scandi Shake and AquaAdek's vitamins. I'm looking for a company which sells these drugs on line and could ship them to Poland. Thanks for your reply, Annette
12.01.2009
Sweat test was negative
We had the second sweat test performed on Wednesday because it was found in the stool samples that our daughter had a protein and fat intake dysfunction. The test was negative. She is taking pancreatine now. Does that mean it is clear now that CF is no longer an issue?
12.01.2009
Another question on the answer of Prof. Stuhrmann-Spangenberg about 7T-allele
Dear Prof. Dr. Stuhrmann-Spangenberg You write as an anwer to a question among other things: "One should make a comment on the genetic variant R117H: this variant can exist on two genetic backgrounds, one so-called 7-T-allele or a 5-T-allele. The latter would be graded as a CF-mutation, the first only in rare exeptional cases..." My questions: Why is 7-T-allele only in rare exeptional cases graded as a CF-mutation? How can this be understood? I always thought that a change is a mutation or is not a mutation. How would it be according to the above-mentioned knowledge if somebody shows typical symptoms of CF (with pulmonary involvement, Pseudomonas, Stenotrophomonas, nasal polyposis, pnacreatic insufficiency and increased liver enzymes) and only a 7-T/7-T (7-T-homozygouty) is found in the genetic analysis? The whole gene has been analysed. A 2694 TG is also present. Would this be graded as such an exeptional case? Many thanks for your answer,
08.01.2009
Influenza immunization
Dear team members, My daughter , 6 years old , was diagnosed with CF when 9 months old, she had positive culture for Aspergillus fumigtaus from tracheal secretion(2 positives results, IgE 750 , Aspergillus-specific Ig E 3,25, normal thoracic Rx image, without any clinical signs of infection just loss of appetite). She was treated for 4 months with voriconazole and prednisone (starting with 30 mg) . Now, the prednisone dose is 5 mg per day and one day pause (alternative). The treatment result was good ( decrease of Ig E levels, but not to normal values yet), she does not cough , appetite increased; sometimes she has problems with sleep (I think that this is the prednisone effect). I would like to ask you what do you recommend in continuation, considering that we stopped, following his doctor’s advice, the voriconazole (after 4 months), but still take the prednisone. Also I would like to ask if the gripal immunization is recommended, if she takes 5 mg prednisone . Thank you for your attention.
08.01.2009
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