Topics

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
Ferritin
Hello, I (female, 39 years old, CF, chronic Pseudomonas) suffered for a longer time from iron deficiency (ferritin below 10) with partly anemia. As the physical symptoms (exhaustion after minimal efforts, fatigue, pain in the neck) got worse and worse, I decided together with my general practitioner, to do an infusion with ferrlecit®. The above mentioned symptoms improved markedly. However I realized unfortunately after the infusions, that my secretions and the cough increased. After 4 of 6 infusions I stopped finally the infusions due to the worsening of the pulmonary situation. Now my question: what role does iron play for the metabolism of Pseudomonas? And is there an "optimal" value for ferritin in CF? Respectively could higher ferritin values (e.g. over 50) be a problem for the lung in CF? Many thanks for your efforts.
16.01.2017
Genotype F508del/174del A/K14X
Hello, we just got the diagnose of CF in my 2-year-old son, just a few days ago with the above mentioned mutations. What does the mutation really mean? Is that a mild or a severe mutation? Is it rare? Unfortunately I cannot find anything online. Many thanks in advance.
16.01.2017
Rigid chest
Why does the rib cage becomes rigid with the years when one has cystic fibrosis?
16.01.2017
Rigid thoracic cage
Hello My 14-year-old son has a large chest distension and a very hard rib cage very hard, so that drainage is difficult. He breathes only on its volumes of comfort, difference between inspiration and expiration is only 4cm, he has hypersalty serum, the strap, flutter + balloon exercises. Is it possible to do something else? Thank you for your reply
16.01.2017
S. aureus small colony variants
We just received the sputum culture of our 7yr old daughter, which showed the presence of S. aureus and S. aureus small colony variants. What is the meaning of small colony variants? Should we treat these colonies? Is it a classical evolution of S. aureus?
02.01.2017
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