Topics

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
Flu shots
Dear Experts, It is generally recommended for children with CF to get flu shots. However, my son (16 months old) reacts very sensitively to vaccinations; after every (different) one he has had so far, he contracted bronchitis even though he does not have any other lung problems. Should we have him vaccinated nevertheless, even if that means risking that he has to be treated again due to the shot? Many thanks.
08.01.2009
Edible mushrooms
Is it correct that people with CF should not go collecting mushrooms and not even eat them?
08.01.2009
Hygiene guidelines for using a port
Dear experts, I am asking on behalf of a patient: My question: Are there any general hygiene guidelines for using a port? I got my port two-and-a-half years ago. When I taught how to carry out my i.v. therapies at home 18 years ago, cleanliness was of utmost importance – closing the windows, washing hands, disinfecting, etc. When rinsing my port (I have had it for two-and-a-half years now) I have to fight for all that: sterile gloves, swab, I only get band-aids when I ask for them. I have never seen surgical masks, injections being drawn up sterilely, or even sterile drapes at my clinic. On the other hand, I witnessed an infusion being drawn up on the ward and, with the infusion set attached, being carried across the hospital to the CF clinic – unprotected. Or the nurse would disinfect her hands carelessly, then run them through her hair and afterwards change the infusion. It isn’t any better on the ward. This uncertainty leads me to not have my port opened in the clinic anymore, let alone have the nursing staff on the ward administer infusions to me. Since my port is located in my upper arm, however, opening it myself is quite difficult. There are hospitals, though, that abide by specific hygiene rules even when they have got their hands full. Your answer explaining how much hygiene is required when using a port is meant to ease my uncertainty, and I could also argue with the hospital staff and doctors differently than just with my anxiety. Many thanks!
08.01.2009
Liquid Oxygen
Dear Expert Team, first of all, kudos to your efforts in answering the numerous questions. I am a little puzzled, since I just read an article on oxygen administration in which TO Hirche said (in answering the question of a 41-year-old patient) that additional oxygen administration leads to an “increased inflammatory reaction in the lung.” What does that mean? I am very concerned now, since I also take additional oxygen at night. Thank you very much in advance. Kind regards.
08.01.2009
Turmeric
Does taking turmeric help, and how much of it does one have to take?
08.01.2009
Another question
Thank you for your quick answer. We received a call today. Our daughter has a protein and fat intake disorder and we have to take another sweat test tomorrow. She is taking pancreatin now. Our pediatrician thinks it could be a sub-group. Does something like that exist?
08.01.2009
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