Topics

Feeding
Hello, my son 5.5 years does not gain weight, he even lost (300g) at his last visit to the CF Center, if he doesn't gain weight, he will be back in hospital! I wonder if there are books with high-caloric recipes or links where I could find this kind of recipes. I have looked for it in the net but I found nothing !! Thank you in advance for your answer. Best Regards.
08.03.2015
Weight gain of baby
Hello our son had a tube from June to December, but he can no more stand the naso-gastric tube (vomiting...), we have removed it since mid-December and since then his weight stagnates despite substantial eating and increase of Creon. Do you think that we should consider a gastrotomy until the weight gain is going to start again? Thank you.
08.03.2015
Pseudomonas
Hello, My two nephews the eldest 4y and the youngest 11m are suffering from CF. They carry the F508del / 3272 26 AG. The youngest has been screened at birth, while the eldest only now (false negative at birth). The eldest had no care for 4 years. Lungs appear more damaged thereby. He just had a Staph and was treated for it. Now he has a Pseudomonas germ that, from what I read, is bad. He began a course of aerosolized antibiotics for 28 days. Is it normal to get this germ at his Age? Are antibiotics effective? Can he contaminate his little brother? Thank you for all the information you could give us. I must say that the CF Center doctor doesn’t provide a lot of information about their condition. We do not know if it is for sparing the parents, but it’s not easy to know about their heath condition.
03.03.2015
Implantable Venous Access Device (IVAD) and sports
Hello Are some sports contra-indicated for patients who have an IVAD? I have a patient who has just an IVAD and plays badminton? Can I advise him to pursue the sport despite the catheter? Thank you in advance
03.03.2015
CF baby
Our baby (24 months old) is suffering from cystic fibrosis lung disaease for 2 years. Is there an organization that can help us to be treated in France? With our thanks in advance
02.03.2015
Early diagnostics
We know that our son (6 months old) has an increased risk for the illness of CF. A first screening test after birth did not show any hints for the disease and clinically he is up to now also totaly healthy. Now I want to know, if we should have a sweat test done nevertheless, to be able to start treatment if necessary as soon as possible? Many thanks!
02.03.2015
Warmwater bath days in the public swimming pool
Dear expert team, in an indoor swimming pool near our home there are so called warmwater bath days (the water temperature is at 31°C). Can my daughter (CF, 2 years old) take a bath there or is it like with the baby pools and jacuzzis and therefore has to be dehorted? If yes, this would unfortunately mean that she can not go swimming at all, as the "cold" pools are still too cold for her. Until now, she has been at the warmwater bath days two times and she loves it very much...Many thanks for your answer. Best regards, M.L.
02.03.2015
Mucus in the stool
Dear ladies and gentlemen, our son is now 13 weeks old. Since the second week that I stopped breast feeding, he has mucus in the stool. We have been in the hospital and have been discharged with the suspicion for cow's milk allergy and with a special milk. Abdominal pain, flatulence, diarrhoe and blood in the stool have disappeared since the beginning with Neocate® (highly hydrolized milk on amico acid basis), however the mucus in the stool, the reason we went to the pediatrician, stayed. He gains weight well. Birth weight 2700g, now with 13 weeks 5900g. Our midwife recommended to have him tested for CF. In the hospital and also at the pediatrician they do not want to hear anything about it. In the hospital they have told us, that they had nevertheless made a test for CF and measured the value for pancreatic elastase. This value was o.k. I know that this value is not a test for CF. Is the pancreatic elastase always decreased in children with CF or can it indeed be that this value is normal? He has no problems with his lung, has at the moment however a cold, has had however at any time a free lung. Can one say that in case of the symptom of mucus in the stool alone, one should initiate further tests for CF? I am very thankful for an answer!! Best regards A.G.
17.02.2015
Hyperinflation of the lung
Dear expert team, for month I (CF) have extreme problems with the hyperinflation of my lung (residual volume 280%), so that I am very handicapped. The hyperinflation occurs mostly in the afternoon, increases in my opinion if I inhale hypertonic NaCL, and does not disappear until I go to bed. Also physiotherapy aimed at deflation does nearly bring anything at all. If I do not inhale at all or only isotonic NaCL, I have the feeling, that I do not cough up enough. With Bronchitol® I have worries that the lung is not moistured enough. My CF physician leaves me unfortunately alone with the problem. Do you have a recommendation for me? Many thanks. Best regards
17.02.2015
Genetic analysis
Hello! After two sweat tests we know, that our daughter suffers from CF. Today we got the results of the genetic analysis of our daughter. She has the following mutations: c.1647T>G und c.1652G>A Can anybody tell me something about it? It is also written, that she is "compound heterozygous". Many thanks!
17.02.2015
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