Topics

Food and cystic fibrosis
Hello, my baby has cystic fibrosis, I start diversifying food and I wonder about what is best for her knowing that she is a small frame and that one seeks to make her gain as much weight as possible ... rather strong pressure from doctors .... her diet is supplemented at night by enteral nutrition to help growth ... what foods to choose? how much for a 7 month and a half and six kg ? How many meals a day are recommended, should we follow the advice given to other children? What are the specific needs related to her illness? Thank you in advance.
08.05.2012
F508del
I carry the F508del mutation and I would like to know a bit more about this gene abnormality.
08.05.2012
Gain or damage by CT scan
What is the indication to do a CT scan in a 2-year old child with CF? What can we decide from that?
08.05.2012
Bacteria, contagious for a non-CF-patient?
We seem to notice that when grandma has visited our 3-year old daughter with CF that she gets worsening of her COPD or bronchitis. Often to the degree that she needs prednison and antibiotics. Is there a possible connection? Could it be that our daughter carries a virus or bacteria that is contagious for grandma and vice versa? Grandma does not have cystic fibrosis.
08.05.2012
Infection
What does infection with mycoplasma do to a patient with CF and is this easy to treat?
08.05.2012
Alternatives to e-flow
Hello, I am using the E-flow® to inhale hypertonic saline solution. Since the E-flow’s® aerosol generator wears out even when closely following the cleaning instructions (technically, one would need a new aerosol generator every two weeks), I would like to know what is the best alternative – regardless of the price – on the basis of ultrasound. Criteria: Speed and stable long-term efficiency. There is no problem with overdosage through more effective inhalation, since I plan on using the new device only for hypertonic saline solution. PS From a layperson’s perspective, the market is quite limited. I heard that the inhaler used in the context of gene therapy studies in Great Britain is particularly good. Is that true? Kind regards.
08.05.2012
Male with cbavd, woman no abnormalities on the CFTR gene. What are the consequences?
Because we wanted to start a family, but no children came, we went to a fertility centre. Tests revealed that there was no sperm in the ejaculate. Further tests revealed absence of the vas deferens and small seminal vesicles. Genetic tests revealed an abnormality in the CFTR gene. I am 33 years old, I have never had any symptoms of CF. I assume it will remain like that. Since I have this genetic defect, tests were done in my partner. She does not have any CFTR gene defect, so we will have a fertility treatment ICSI. What are the risks to the baby? Will he be a carrier and that’s it?
08.05.2012
Inhaling more quickly
Our daughter is whining and crying each time during the therapy because she is bored. She does not want to do her therapy and this is really troubling our everyday life. Therefore, my partner had the idea to mix the drugs to make inhalation quicker. She needs Colistin and Pulmozyme® (Dornase alfa). What do you say?
08.05.2012
A long ordeal
Hello, I am writing concerning my husband, who is now 31 years old and has been having problems for four years. It started with sinusitis at the time… Since then, he has been suffering from viscous phlegm in the sinuses and particularly also in the lungs. He constantly clears his throat, has been coughing almost regularly in these four years, and in effect has been having yellow phlegm constantly as well. The lung pressure has been deteriorating in the last three months. He is being treated at a lung clinic but all diagnostics keep leading the doctors to the conclusion that he has asthma and that he has to learn to live with it. In addition, a mite allergy would cause the problems. However, my husband and I feel that that cannot be the only thing. He is underweight, has very little body fat and does not feel fit. He himself got the CF idea and told his doctor about it, who dismissed it. However, upon researching the internet, I found several articles that specified almost exactly the same symptoms, with atypical CF as a cause. The enlarged spleen, which has known of for three years, could be explained this way. Can you give us a recommendation as to what we can do in order to have diagnostics done for atypical CF? Many thanks for your help.
08.05.2012
Further question about 7% NaCl
Hello, Earlier, I asked a question about 7% NaCl solution since many studies are based on this concentration. Now I read that the combination of 7% NaCl and hyaloronic acid (0,1%) can make sense. And actually I found such a combined solution in the internet [German site], e.g. here: https://www.aliva.de/angebote/hersteller/p/pari-pharma-gmbh/hyaneb-7-nacl-0-1-hyalurons-auml-ure-inhalationsampullen-30x5-ml-pzn-7646633.html?trackingurl=2be8a779-cd38-4f46-bd79-4000332a976a Does this make sense and is it possible to get a prescription paid by a public health insurance institution [in German: Kassenrezept]? Best regards,
08.05.2012
<<  < 187 | 188 | 189 | 190 | 191 | 192 | 193 | 194 | 195 | 196 | 197 | 198 | 199  ...  342 >  >>