Topics

Getting pregnant with CF
Hello, I want to know, how it is with pregnancies. I am afraid that I cannot get pregnant. I know some women, who have a child and they are doing much worse than I do. However, the fear is always there. I have stopped the pill last month, and I am waiting for the next menstruation that I can use the Clearblue fertility monitor. How difficult is it to become pregnant with this illness? In general I am doing well, except for infections in the meantime. But I am making myself completely crasy with the fear not to be able to get pregnant.! I am 21 years old, 1,60 m high and weigh 47 kg. My FEV1 lies always between 70-100%. Therefore everything is o.k. I think. And infections I only have during the winter. My friends have it harder with underweight and partly an FEV1 of only 30%! My partner is very healthy, fortunately. With the pill my menstruation has been regular. Many greetings
09.12.2010
Small body height
Dear expert team, My son has been diagnosed with CF at the age of 9 months. He has been breast-feeded until the age of 6 months. Until this point in time his body height lay exactly on the 50th percentile, his weight slightly higher on the 75th percentile. As the breast-feeding ended, he did not gain weigth anymore and also the height did not change anymore. For this reason a sweat test had been done which was positive. In general, my son does relatively well. He did not have any relevant germs until now, therefore he did not have to take a course of antibiotics so far. The therapeutical measures include only physiotherapy so far (once a week) and of course pancreatic enzymes (creon 10 000). In the meantime my son is 5 years and one month old. His height is for his age much to small with 103 cm (3rd percentile). Concerning his weight, he is one percentile higher (10th percentile). My wife is with 155cm relatively small, I am of average height with 181cm. According to the height of the parents it cannot be expected that my son will be 190cm high, but we have of course the hope that he gains a quite average height (of probably 170cm). Now to my question: We want to visit an endocrinologist, who should evaluate my son because of this. I know that CF has an influence of course on the thrift of a child, but how is it in the concrete case? As the weigth of my son is over average compared to his height, I assume that he utilizes the food relatively well. According to this there arises the question in my opinion, if the small body height can only be related to the CF. For us this is important, as we do not want to put him underneath the "torture" of daily injections of growth hormone (rhGH) if it does not help anything or only a bit. What do you think about this? Is there a chance that rhGH can have some effect in my son? Many thanks for your answer.
09.12.2010
pancreatic enzymes
What effect, if enzymes are administered to a 2 years old child who then refuses to eat. Will he suffer from abdominal pain?
09.12.2010
Life expectancy
No other site gives the same results. I am a woman of 45 years living in France, as a couple without children. I have got a mainly digestive CF with diabetes ... I'm followed up by the CF Center of X and my health is fair (with no special issues except Pseudomonas at end of 2007 since then eradicated). I'd like to evaluate the life expectancy of people with my "luck" ... and would like to know the statistics of 2010 survivors of my age! Thank you.
09.12.2010
CF and growth hormone (GH)
Hi! My 11 years-old daughter visited the endocrinologist who proposed to treat her with GH because her expected adult height will be 1.45m. Supposing she will not be again treated with itraconazole, a period responsible for a 2 years of bad weight and height gain, my question is: the CF treatment of my daughter is already important and the endocrinologist said that GH treatment was at least for 4 years with daily injections, is the GH treatment useful ? What are the side effects of this treatment ? Thanks.
09.12.2010
Ice scating
Dear answerer, our son has CF. We have been to the ice scating stadium recently and suddenly there came from above smoke/dry ice? - we do not know what it was. We have asked ourselves, if the breathing in could be a problem because of CF-germs, especially Pseudomonas?
07.12.2010
Lung
Hello, my daughter, 13, did well until april. Then she got a pneumonia and a pleuritis. She struggled for a long time with that. Now an operation should follow after many investigations, the middle lobe of the lung should be removed as it collapsed during a bronchoscopy. My question: is it really necessary or can this be postponed as long as possible?
07.12.2010
Pseudomonas
We have received an antibiotic drug, which has to be mixed togehter by us with water for our CF son. He has to take it for 14 days. In how far is there a risk, that Pseudomonas grow in the preparation within those 14 days?
07.12.2010
Screening
Hello, I am 30 years old and 3 months pregnant. My doctor advised me to check for DF508 together with Papp-A. I understand that this is one of many mutations. There is no history of CF in my or my spouse’s side of the family. Do you believe that the screening should involve a complete check (the one that identifies 85% of the mutations), or is this something reserved for special cases? Thank you.
06.12.2010
Prevention
Hello, I have a 2 1/2 years old son with CF. I was wandering weather nebulized hypertonic saline could prevent colonization, or what other mesures would help/prevent any infection risk. Is it a good idea? Best regards,
06.12.2010
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