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Topics
- Stem cells from cord blood?
- Hello, our first child suffers from CF, and we are expecting our second child (healthy carrier). One reads again and again about advertisment for freezing of cord blood after birth. Do you see a potentially advantage in the (far) future of cord blood respectively cord blood stem cells of a healthy baby concerning the illness of CF of the sibling? Many thanks for your answer!
- 05.03.2018
- Inhalation of Biklin® (amikacin)
- Dear expert team, as I have mycobacterium abscessus in my lungs, my CF center has recommended to inhale 1-2- times daily amikacin for 3 months. Do you know, if amikacin can be inhaled with the e-flow? I have some other questions: At the beginng of 2016 I had problems to see and strong vertigo, it was suspected that this were side effects of tobramycin that I inhaled at that time for more than 2 months. After finishing tobramycin, those side effects disappeard after about 3 months. Amikacin is as tobramycin member of the aminoglycosid family. Do you have knowlegde about side effects of amikacin concerning vertigo and visus problems? Would you therefore dehort the inhalation with amikacin? Many thanks
- 05.03.2018
- Nucleoitc change of unknown significance
- I am 16 weeks pregnant and I was tested for 99% of CF mutations for purely preventive reasons, as there is no history of CF in my family, or in my husband’s family. The results showed the nucleotic change c.1001G>A (.Arg334Gin) in the CFTR gene in heterozygote condition and that there are not enough data from the literature concerning its pathogenic significance. What does this mean exactly? Am I a carrier of the CF gene? The recommendation was for my husband to get tested for the 99% of CF mutations. The results will come out in a month? What are the possible scenarios, if he is found to carry a mutation? Thank you!
- 09.02.2018
- possibility for CF
- I am a mother of two children. My second child has a persistent wheezing. We have had a full respiratory examination, an Xray and we did a sweat test with a result of 19.2. The first testing of the sputum reported pseudomonas, but not the second one. We were advised to have a genetic testing for CF. I was tested for df508 in my first pregnancy with negative results. Do you think my child has CF?
- 09.02.2018
- bacteriophages
- Dear reader, I have read interesting information about research on bacteropphages on Pseudomonas aeruginosa. Is this a study that is going on in Europe? http://www.ampliphibio.com/product-pipeline
- 09.02.2018
- pseudomonas bacteria
- Dear reader, My brother-in-law has installed an electric humidifier in his house. He has to replace the water every month (this is stagnant water). The water is NOT heated but is still on the floor (room temp.). Does it give more risk for the Pseudomonas bacteria? My son has CF. His visits are rather monthly than daily. Thank you for the advice!
- 09.02.2018
- CF diabetes sugar replacement
- Hello, what is your opinion about the sugar replacement "bio sweetener" - can a patient take it without risks (if he can afford it...)? Thanks
- 26.01.2018
- B. Dolosa
- If two siblings have CF and B. dolosa and one of them is getting a lung transplantation, is there a risk for the sibling who had a transplantation because of B. dolosa and the other sibling who had no transplantation? Are there any research results, we could get information from? Many thanks
- 22.01.2018
- Stenotrophomonas maltophilia and sweat test
- I have a baby girl, 11 months old. She had secretions and we visited the pediatrician, an ENT doctor and a pneumonologist, we had a chest an xray and sputum cultures. The only finding was Stenotrophomonas maltophilia. We will do a sweat test. During my first pregrancy I was tested for CF mutations with negative results.
- 19.01.2018
- Carrier of CF mutation
- I am 34 years old at 21st gestational week. I am a carrier of r75Q after checking for 85% of CF mutations. My husband was checked for 99% of CF mutations and he was found to carry S977C (unknown clinical importance). The genetist expert advised us not to proceed to amniocentesis, since the mutation I carry, when combined with another typical CF mutation, in a worst-case scenario would lead to CF with only mild symptoms. I would like to ask if you agree with his opinion/assessment?
- 19.01.2018
