Topics

To have children - CF in the family
Hello, the good brother of my husband has a child with CF. Now my husband and I think about family planning and we are asking us the question, if we were carriers. Can we have a test done for free? According to our general practitioner, we have to pay the test ourselves (7000 Euros). Can the diagnose CF of the child be made during pregnancy?
20.01.2017
Kreon® and breastfeeding
Hello, My daughter is 1 year old and suckles day and night in a more or less brief way. I read that breast milk contained pancreatic enzymes. Because of this, for fear of giving too much and because of fatigue at night, I stopped giving her Kreon® for a few days during feedings. But I give it to her when she drinks artificial milk. What do you think ? Best regards
20.01.2017
Pancreatic insufficiency
Hello, We have just got to know that our 2-month-old CF daughter is pancreatic insufficient. Yet, nourished by breastfeading, she has, for 2 months, gained a lot of weight. Could it not be a mistake? If she can't assimilate the fat, how has she gained weight since birth? Thank you for your reply.
20.01.2017
Smecta®
Hello, In these periods of gastrointestinal epidemics or other causes of diarrhea, is smecta® contraindicated for a young CF patient in case of severe diarrhea and severe stomach pain? I read that this medicine was fixed to the mucus. Thank you!
20.01.2017
School trip
Hello I have an 8-year-old CF daughter and the teacher told me about a "green class" (school trip) project for next spring for a week. I wonder how I could allow my child to participate in this trip due to the absence of inhalation and physiotherapist sessions during those 5 days. Could you please give me your opinion?
20.01.2017
CF patient and hepatic problem
Hello, I'm the mother of an 11-year-old CF child weighing 37kg and having the d508 mutation. I live in Morocco. About 1 year ago, we had an ultrasound and we detected hepatomegaly. His liver measured 13.6cm. He was treated with ursolvan (ursodeoxycholic acid) 200mg / d. This week, we carried out an ultrasound again and his hepatomegaly was accentuated (15 cm), so a scanner revealed an hepatic steatosis. I looked for publications to discover that steatosis occurs as a result of lipid imbalance and that Ursolvan had no effect on CF hepatic steatosis. Please, I would like to know: - If there is a particular diet to overcome this steatosis problem - If it's true that ursolvan has no effect on steatosis - If not, which dose should it be taken? - And if the dose of 200mg per day is an insufficient dose (so steatose is a consequence of this maladaptive treatment)? Thank you so much
16.01.2017
Immunoreactive trypsin (IRT)
Hello does the IRT test remain significant for a 9-month-old baby? He has a growth retardation (weighing only 3.5 kg). His fecal elastase is positive and he suffers from abdominal distension. Thank you
16.01.2017
Blood test
Hello, With a blood test, can you find out if there is an infection in a CF patient? Is there a link to white blood cells? Thank you for your reply Cordially
16.01.2017
Symptoms of a toddler
My 2-year-old daughter has the following symptoms - my question is if it could be CF underlying and how this could be tested. She wakes up several times at night - 5 to 10 times -, very flat breathing with sounds, very light sleep, almost always a light cold, with rhinitis it is turning worse, slient reflux has been diagnosed, however we have been told, it could not be treated at this age. She is during the day often tired, however she does not sleep; she is moving quite few, does most things in a sitting position; she is often vomiting in the car and it is then very slimy. Thanks.
16.01.2017
CF diabetes
Dear expert team, I have a general question: is it possible to avoid a CF diabetes via an optimal nutrition or possibly delay its onset? We live on wholefood, and I produce anything that is possible, myself. We avoid all "hidden" sugars (e.g. in completed products). Sweets are still allowed, however very restricted. This is however not a problem for my son (CF patient, 8 years old). My next purpose would be to replace also the sweets via healthy food with "healthy sugar alternatives". In the end, we avoid all, that leads to a fast increase of the blood sugar. Is it possible that we might have success with this kind of nutrition to delay or even avoid a CF diabetes? Actually, there is no hint for a CF diabetes in my son. In the long runs, however, I am worrying. Many thanks for your efforts,
16.01.2017
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