Topics

Mild CF
Hello My daughter, 2 months old, has a positive genetic test with F508del and 5T abnormalities but sweat test has been negative; she has just been diagnosed as a mild form of cystic fibrosis... She will be followed in prevention every 6 months throughout her life ... Extremely rare cases apparently so few answers from the doctors ... But I'd love to know ... what will the future bring? Will the symptoms of the disease inevitably declare one day or another? Which precautions are to take? What risks are there? Will she be more fragile? Thank you in advance for your answer...
11.05.2016
French Registry
Hello, To a question I asked you about the mutation 3849 + 10 kb and neonatal screening you answered that 80 patients were carriers of this mutation and only 17 of them were detected by neonatal test. Were the other 63 patients false negatives because they were pancreatic sufficient? Thank you and best regards
11.05.2016
Bronchiectasis
Hello, I wanted to know if bronchiectasis causes death? Is that nowadays it cannot be treated relatively well? Thank you for your reply Best regards
06.05.2016
Colobreathe
Hello, I wanted to know the minimum interval for colobreathe? In my case, there is once a day or do I do it every 10h? Cordially
06.05.2016
Pulmonal damage
Hello, In case a child with CF can nearly never expectorate sputum after inhalation of 6% hypertonic saline, and also otherwise there are no problems with cough or the airways, can one then assume, that the lung is not as strongly involved by the CF? Is it true that there are in general two different forms of manifestation: on the one hand patients who show more a pulmonary involvement, but rather have few gastro-intestinal problems, and on the other hand those, who have a gastro-intestinal manifestation and few pulmonal problems? How is the damage of the lung exactly happening if there is no obvious mucus production in the lung, no "problematic germs" have been found and no (obvious) infections did occur? Can a consequent inhalation scheme (6% hypertonic saline and rh-DNAse) prohibit these lung damages or at least slow them down, if a patient inhales from birth on regularly? Many thanks for your time and advice!
06.05.2016
Physiotherapy, treatment of two CF patients one after the other
Hello, my question is about physiotherapy. The situation is acutally like this, that just after our child, another child with CF comes for therapy. This is happening like this: Our child is for 60 minutes in the treatment room, then it leaves the room and the other child is already waiting in the antechamber that is quite small. In this office there is only the treatment room and the waiting area in the antechamber. It is a flying change. I did not realize yet, that the therapeutic devices are disinfected. I do really not feel well in this situation, especially as the other child is coughing increasingly. I do not know this from our child and therefore I am worrying.... Unfortunately, there is nowhere another possibility, to get a CF physiotherapy. And furthermore it is in this office like this, that the physiotherapist is only working there for these two hours on that special day, as she is working full-time at a hospital. However, there, all out-patients have been "dissmissed". I would be pleased about your advice concering the germ problem. Many thanks.
06.05.2016
Unexplained stomach pain
Dear expert team, for some month I suffer again and again from unexplained, crampy stomach pain. It deals with a kind of pain other than after a forgotten/wrongly dosed Kreon intake, it does not go along with stool irregularities. It was striking, that this pain occured frequently in phases when I did sport regularly (about 3 times a week). Often this pain occurs during the night, and I wake up from it. After the intake of a little meal or high-calorie shakes the pain is disappearing fast, however returns after some hours. In passive phases without doing sports this kind of pain did almost not occur. What could be the cause of such kind of pain? Mayn thanks in advance for your efforts. Best regards, LK
02.05.2016
Contraception in case of the intake of Orkambi® or the like
My daughter (20 yrs) takes part in a Vertex study, the drug is similar to Orkambi®. For contraception, the pill and all other hormone-based devices, are not suitable. How can she do an effective contraception without being afraid of getting pregnant? The gynecologist has no understanding for her situation and is recommending only the pill.
25.04.2016
CF Screening Test
Hello, Currently pregnant 2 months and a half, I have a niece who has cystic fibrosis (my sister’s daughter) and my spouse has a cousin, a boy of his mother's sister, who is CF. I wonder if there is a chance we be carriers?
25.04.2016
Melatonin
Hello, my 8-year-old son has cystic fibrosis and has trouble in sleeping. It takes him very long to fall asleep and he joins us in the night. He is followed up by a child psychiatrist who prescribed 2mg of melatonin for 1 month. What do you think? The CF Center pediatrician had prescribed the périactine to open his appetite but I read on your site that you advise against this drug when suffering from cystic fibrosis. Thank you for your reply. Best wishes
24.04.2016
<<  < 37 | 38 | 39 | 40 | 41 | 42 | 43 | 44 | 45 | 46 | 47 | 48 | 49  ...  342 >  >>