Topics

Vitamin D
Hello, My son has CF, and I just heard that his vitamin D level is only at 15 ng/ml. He is an adult of normal weight. How quickly would you saturate and in which doses? The literature has different specifications (ranging from 20.000 IU per day to 200.000 IU per day) until the value reaches 30; ...
15.05.2012
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 ...
08.05.2012
Creon
I am 18 years old and take creon almost regularly. I am surprised, though, that I am not thin, like the other CF patients. I am 153 cm tall/short ;-) and weigh 55kg, and I have a rather plump belly which bothers me. My question: am I taking too much or too little creon?
07.05.2012
Frequent stomach ache (underbelly)
Hello, my daughter (12 years old, CF) keeps having stomach aches in the underbelly, at times severe. She has the feeling that the stool “pushes” and that she has to go to the toilet repeatedly, although the pain rather gets worse afterwards. Quiet, distraction with positive things (e.g. ...
02.05.2012
Vitamin D and vitamin A substitution
My vitamin D value is 40ng/ml, I take 1000 I.U. cholecalciferol daily. The normal range for vitamin D is up to 100ng/ml; should I aim for a higher value? My vitamin A value is 39µg/dl, normal range 30-70 µg/dl, should I supplement vitamin A?
24.04.2012
Faecal elastase
Hello, Whereas previously the fecal elastase of my 3yr old daughter was normal (greater than 200), the last test shows a significant drop of elastase with a level of 57 like a severe pancreatic insufficiency. Is this result irreversible? Could the elastase return normal? is Creon enough to ...
24.04.2012
No kreon despite cystic fibrosis
Dear Sir or Madam, I (female, 24 years old, CF) have not taken kreon for about two years. I am 160cm tall and my weight is 53kg (stable) and I do not have abdominal pain at all and bowel movement is well. My doctor is not happy about it [that she is not taking kreon] but I do not see the ...
17.04.2012
Orthomol®
Hello, Friends recommended me "Orthomol immun®" for strenghtening the immune system. Is this product an alternative to vitamin products? Or can it be taken in addition to these? I know that it is pretty expensive but if it helps…
22.03.2012
gastrojejunostomy
Hello, my 5 month old daughter has a naso duodenal tube since mid December (at first naso gastric), because she had a low growth, while taking weight, now the doctors discuss about gastrojejunostomy while her weight for height ratio is good, 5.200kg for 58 cm, I would like to know what are the ...
22.03.2012
Kreon and pancreatic sufficiency
Our child is a heterozygot for deltaF508 and R1070W, with minimum clinical manifestation so far (pancreatic sufficiency, no pulmonary complications, just episodes of severe dehydration). At 3 years of age he weighs 15 kg and is 102 cm tall, he has solid, normal stools. He never recieved Kreon or ...
22.03.2012
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