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Topics
- physiotherapy
- Hello, my daughter, aged 10 months, is Lebanese, she has CF. She was detected at her birth because of a bowel obstruction. Her pediatrician didn't priscribe physiotherapy, just vitamines. When she was 8 months old, she has an ECBC, she has pseudomonas in her suputum. Then she had antibiotic by IV and a PAC. After her stay in hospital, we started chest physiotherapy, 3 times a week but only 5 minutes. My question is: is it enought 3 times a week only 5 minutes? The physiotherapyst told me that it was enough for her Ii can't learn to do it by myself because I could breack her diaphragm. I want to know if I am doing the right thing? If I learn to do it how much time must I do it? My daughter cries every time she does physiotherapy. Thank you very much
- 01.02.2016
- Chest Physiotherapist
- Hello, My son, a 2-year-old boy, is seen in a CF center which doesn't give the same instruction as the others. In fact, my boy is DeltaF508, he has chest and digestive problems. He doesn't spit any suputum since he was born and he was perfectly well. He does one chest physiotherapy every 2 weeks only. It a short session and nothing comes out. I think it's not enough. My CF center says he doesn't need more but when I talk with parents from another CF center, I notice that the other kid does more chest physiotherapy. I'm scared not doing the right thing. What do you think? Why such differences? Thank you
- 01.02.2016
- Aerosol of physiological saline solution
- Hello, Our son, aged 14 months, has never productive cough. He does 3 physio sessions per week during which he never spits anything. Is it useful to try saline aerosol before the physio sessions to fluidize the suputum? Thank you
- 01.02.2016
- Research
- Hello, May I ask you whether regarding the current level of research (+ 1900 identified mutations and the importance of modifier genes) a study on the mutation and modifier genes that parents passed, would not be a source of useful information for the development of a treatment adapted to the patient? In other words, what is that despite being carrier, they have not developed the disease? Thank you for your response.
- 01.02.2016
- bronchial stent
- This morning, I saw on TV that it is possible to put a bronchial stent which allows to increase respiratory function and avoid oxygen therapy for some respiratory diseases. I have oxygen and I ask for the possibility of this treatment in cystic fibrosis.
- 01.02.2016
- Staphylococcus aureus
- Hello, My daughter (5 years old) has CF. The last sputum exam shows Staphylococcus aureus infection (2 strains). She is under antibiotic treatment for 14 days. We have to stay 10 days with my father who is suffering from cancer and undergoing chemotherapy. I wanted to know if it would be dangerous for my father that my daughter is a carrier of Staph and whether its needs special precautions or waiving this stay. Best regards. Thank you.
- 01.02.2016
- Staphylococcus aureus
- Hello, The 2 last sputum analysis of my 8-year-old little son showed Staphylococcus aureus. However, no antibiotic was prescribed. A priori, the CF Center does not find this alarming. Is it because there are colonization thresholds? Thank you for your answer.
- 01.02.2016
- life expectation of CF nowadays
- My son is born in 2015 with the classical form of CF. What is the life expectation of a CF patient born in 2015?
- 01.02.2016
- Negative gene sequencing and negative sweat test
- Can you rule out cystic fibrosis with a negative gene sequencing and a negative sweat test? Is the sequencing reliable and able to rule out the disease in a child? Thank you very much
- 01.02.2016
- Intermediate sweat test
- Hello, I ask myself a lot of questions after reading one of your answers to a subject. You said in this response that the sweat test should be less than 30 µmol/l. My 16-months-old daughter has CF (diagnosed at 1 month) with a DF508 mutation and another mutation of class 5 G3272-26A and a sweat test at 75 ... She is currently moderate pancreatic insufficient with 167 for the last fecal analysis. She has no weight or growth problems and ther stool is "normal". The sweat tests performed on my 4-year-old son at the CF Center were 34 and 35 µmol. The Professor of the CF center told me that our son was not suffering from CF. At the time of his birth in 2010, he had performed the Guthrie test and I think it was negative as we had not been contacted. He is now 5 years old and has had a lot of bronchitis since birth in the winter. We put it down to the school etc, but reading your answer, I ask myself questions knowing that my daughter has two specific mutations. My son has a growth curve excellent view above the norm. Is it possible that my son has cystic fibrosis?
- 01.02.2016
