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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
- antibiotic therapy
- asthma
- complementary medicine
- covid-19
- diabetes
- diagnostics
- drugs side effects
- drugs under development_genetic therapy
- ENT
- general aspects
- genetics
- health care
- hepatobiliary disease
- hygiene
- i.v.-lines
- inhalation
- lung
- microbiology
- miscellaneous
- modulator therapy
- MRSA
- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
- psychosocial
- public facilities
- recreational activities
- reproduction
- research
- social law
- sport
- swine flu_novel influenza
- transplantation
- travelling
- vaccination
- ventilation
Topics
- Mutation F508del/E822X
- My daughter is six years old and has CF – mutation F508del/E822X. Is there any progress in the treatment of this specific mutation and does it matter if the manifestation of the symptoms of the said mutation is lighter?
- 29.12.2009
- Factors that can influence the thickness of the secretions
- Dear expert-team, Are there conditions apart from medication that can make secretions more tenacious or more liquid? For instance type of food, weather conditions, etc?
- 24.11.2009
- Carreer perspective
- Is it possible for a CF-patient to work, and how does a career for such a person looks like?
- 24.11.2009
- Pep-S system
- Dear CF-Team, I have been using the Pep-S system during inhalation for a short time now. Which of the different mouthpiece sizes (1.5 -5) can you recommend? How much pressure in mbar do you recommend? Kind regards and thanks.
- 24.11.2009
- School, day care, kindergarten
- Hello, The first cases [of swine flu] are occurring now in our local school and kindergarten. Should I take my son (6 years old, CF) out of the kindergarten? We have not been able to get him vaccinated due to a lack of vaccine. Thanks.
- 23.11.2009
- Swine flu
- Dear expert team, my daughter wants to get vaccinated against swine flu tonight. She is 21 years old and we have gathered a lot of information. Unfortunately nobody can make this decision for oneself. My daughter got the seasonal flu shot two weeks ago and inhales currently with tobramycin and dornase alfa. Is there anything to be said agains this vaccination? I am still uncertain but my daughter absolutely wants to get it.
- 23.11.2009
- Frequency of inhalation2 [refers to Q/A Frequency of inhalation]
- We do not practice inhalation with a spacer – I do not know what that is!? We inhale twice with the stated drugs, and our treating doctor insists that we inhale twice so that our daughter is covered well. As an inhalation device, we use the Pari master®, which has been recommended to us for being most effective. The inhalation frequency is a problem in so far as my daughter is stressed out very often and we have to pull out all the stops then in order to do the therapy well. Some parents told us that we expect too much of our daughter if we inhale and flutter twice [translator’s comment: not sure if it should be “inhale twice and flutter” instead]. Of course we want the best for our child, but at the same time we do not want to stress her out unnecessarily. Many thanks for your commitment. It is very convenient for me to get an extra opinion in this way.
- 23.11.2009
- Wisdom teeth surgery
- Hello, Our daughter, almost 15 years old, CF, is supposed to get all her wisdom teeth extracted. My questions: How much of a strain is such a surgery for a child with CF? Can such a surgery be performed on an outpatient basis? Kind regards
- 23.11.2009
- Visiting a saline grotto
- Hello, Are there any experiences with germ loads at saline grottos? There is one around here and I think it sounds quite interesting. Unfortunately, I cannot evaluate the germ situation at all. The manager, whom I had the chance to talk to during a trade show, has never heard of Pseudomonas and could not provide any information. Enclosed is a description taken from the local newspaper: “Unobtrusively, relaxing music is coming from the speakers. It mingles with the gurgling of the saline water that is bubbling through the artificially arranged brook or rippling from the ceiling over brushwood into a pool. As Host explains, temperature, air circulation, and humidity are adjusted in such a way that the natural components of the sea salt create a unique oceanic microclimate. This would help against iodine deficiency and respiratory diseases, allergies, asthma, headache and moreover against disorders of the nervous system.” Do you think a visit bears any potential risks? Many thanks in advance.
- 23.11.2009
- Long-term antibiotics therapy, what dosage? With which antibiotics? Alternating antibiotics?
- Hello, at the recommendation of the CF clinic, we have now decided to start long-term antibiotics therapy with our daughter (15 months) at least over the winter. What antibiotics should we choose? Does one have to switch antibiotics in between due to the risk of resistances? What dosage does one choose by default? Due to staphylococcus aureus in the pap smear, we started with cephazolin and switched to cephadroxil after 4 weeks, and the staph is no longer detectable. She weighs about 11kg and is getting 250mg twice a day [translator’s comment: not sure that this is the correct translation/whether is indeed twice a day]. Do you consider this sensible? Thank you for your effort.
- 23.11.2009
