Sucking off mucus
In the Czech Republic, it is common, to suck off mucus in children, who are still too small to cough up their mucus themselves. I read this in the internet. Our CF center did not talk about this once. My son is 14 months old, we inhale 3 times a day with 3% saline solution plus 3 drops salbutamol. Is this a common treatment in Germany, too?
R334W/R117H in case of 7 T variant
Dear ladies and gentlemen, we got to know, that our daughter has a mild form of CF. She has the mutation p.Arg334Trp (R334W) and on the other allel the mutation p.Arg117His (R117H) with the 7T variant in the poly-T-region. According to our knowledge, both mutations belong to class IV. Furthermore we have been told, that the variant in the poly-T region would be most important for the severity of the clinical picture and in case of R117H 7T, a complete picture of CF would be improbable. Wich kind of clinical symptoms do we have to expect in the course of lour daughter’s life in case those two mutations are underlying? Many thanks for your help!
F508del/R117H sweat test negative
Dear ladies and gentlemen, I am 33 years old. As symptoms I have only a slight “mucus feeling” in the throat, that goes away when clearing the voice. I have had a sweat test done a few days ago and had other values checked. The result of the sweat test was 19 mmol/l. Therefore truely negative. Also the other values were like from a healthy person. A lung CT will be done in the future due to the “mucus feeling” (I am still breast feeding at the moment). I am very glad of course, however I am a bit skeptical. The second mutation is there, indeed. Can it be nevertheless, that a CFTR caused defect is underlying? Could the sweat test be possibly false negative? Should it be repeated for being secure or other diagnostics should be done? In my CF center they said “definitely healthy” and the lung CT is done for the final security. Best regards,
NIV (non-invasive ventilation) weaning?
Hello, I am 38 years old and CF patient. Since a severe pneumonia I sleep for two months with a NIV (non-invasive ventilation) device. Now I tried the day before yesterday to sleep without NIV. This was quite ok. However since yesterday evening and today, my breathing got worse. Oxygen saturation is good, however breathing is hard and lung function at the center today was deteriorated. Now I thought, if my lung could probably have been over-stressed because of the night without NIV and now has a kind of muscle ache and has to recover first. Could that be possible? Is there any advice for weaning from the NIV? Regards,
Pseudomonas Vaccine
Could you give me some news regarding a vaccine against Pseudomonas. A clinical trial was ongoing and had to end on 2015 (I read this on a posted question)
I'm a CF woman. Can I use soap bars, and if so, can we use those handmade, or are there restrictions (for reasons of hygiene, stability of the product ... in the products chosen?
Visit Tropical Greenhouse Zoo
Hello, Our family will soon be visiting the Beauval Zoo. We wonder if it's possible for our 3-year-old CF son to visit the greenhouses to see the crocodiles and the other tropical animals. The greenhouses look great and there is an air filtration system, but this remains a very humid environment. What do you think ? Would you let your CF child go or is the risk too high? Could putting a mask the time to cross the greenhouses help? Thanks a lot for your help !
My daughter puts all her toys in the mouth: how to clean them?
Benefits of not visiting a public school
My 5-year-old CF daughter (delta f 508) has never been educated in a public school for a personal choice. She has many contacts despite all (sports and family environment)... Never been hospitalized, never had an IV antibiotic treatment... Do you believe it's due to non-schooling? Thank you
I have a 3-month-old CF child. I try to educate his 2 year old brother in handwashing but it's not easy Could help me?
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