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Pseudomonas prevention
What are the hygiene measures to prevent Pseudomonas infections? My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). Thank you
14.02.2012
Normal lifespan
My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). I found a study that shows the combination of the two mutations can lead to a normal life span. see below http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785447/ What kind of treatment and further investigations are recommended in this case? I found another study that I could hardly understand, see below. http://www.jbc.org/content/285/46/35825.full Yet my little understanding is that there were done additional genetic tests that can say how much is affected the patient. Where can I do such tests? Or how should I interprete the above study? Thank you
14.02.2012
Getting pregnant, advice needed urgently
Hello, I have been trying to find an answer to my question in this forum, but the problem seems to be different for everyone. I am about 22 years old and had surgery for intestinal obstruction at three days, right after my birth. My course was actually ok, until I simply stopped inhalation and sports for two years (I did not take the disease seriously because nobody talked to me about it). By now, I run for 45 minutes every other day and inhale Mucoclear® 6% (saline solution) and Sultanol® (salbutamol) twice a day. I am 22 years old, 1,60m tall, weigh 50kg, and am currently additionally taking Fresubin® since I would like to get to 54kg. My FEV1 is at roughly 80%. I have never had pseudomonas. During the winter, I have 1-2 colds on average and have been trying for 3 ½ years to become pregnant, but it has not worked. After a coelioscopy I was told that my entire abdomen was full of adhesions (due to the scar as a baby), that the uterus was intact and I was ovulating normally, but that the problem was that the way to the uterus was completely blocked. I would like to try artificial insemination now, but due to the adhesions I think that I will not get around in vitro fertilization. Or will I? And is it okay to get pregnant with my course of the disease and my values? I would appreciate a detailed answer, since I currently do not have a regular treating CF doctor (my clinic is hiring a new doctor who does not know me at all). Many thanks.
14.02.2012
ESBL
my 8 year old son and I have been visiting his Great Grandmother in hospital for the last two weeks. All of a sudden today we were told that they are barrier nursing her because of a urine infection. I questioned the nurse and she said that the infection is called ESBL. I explained that my son has CF. She panicked and said that he should not enter the room to see her. I have just read an answer on your archive about this very subject where the expert stated that the CF child should not visit or have contact with anyone who visits either. This is all rather like closing the gate after the horse has bolted!!! Should I swab my son straight away to see if he has contracted ESBL??
14.02.2012
Steatorrhoea and elastase
Hello, My little 3 year old daughter has a high steatorrhoea but a normal faecal elastase. How can we explain this? I thought that one without the other is impossible. She is treated with Creon and I was told that she has a pancreatic insufficiency but I thought that in this case faecal elastase should be abnormal…
14.02.2012
Pseudomonas
My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). Q: In my case, will pseudomonas infection apear after several other signs of lung affections (eg colds that affect lungs) or he can have pseudomonas in the lungs without any symptoms?
14.02.2012
Heterozygous mutation in the CFTR gene
Hello, In my son (4 years 11 months, developed according to age) a heterozygous misincorporation c.1408G>A (p.V470M) in exon 11 of the CFTR gene was identified. The background: Since a lobar pneumonia two years ago that was treated in the hospital, my son has been suffering from numerous infections. Until today, he has been diagnosed with a total of eight other lobar or atypical pneumonias. A sweat test carried out in the context of pulmonary diagnostics in April showed borderline values of 38mml/l and was therefore repeated. The second result, which we got just recently, was roughly the same (36mml/l). A subsequent gene test returned the result mentioned above, though it was noted that the mutation detected was not the reason for the recurring pneumonias. How would you evaluate this? Kind regards.
14.02.2012
Muscle pain due to co-trimoxazole
Dear expert team, I (CF, 24) recently got my long-term antibiotic switched from azithromycin to co-trimoxazole (960mg three times a day). Since the fourth day after the switch, I suddenly have severe muscle pain when jogging. With each movement of the foot, the pain spreads from the back of the foot to the shinbone and, after 2 km latest, becomes so unbearable that I cannot continue running. During the first minutes after stopping I can hardly move my feet up and down; after a break of a few minutes everything is back to normal again. If I resume running, it immediately starts again. It feels like the muscles were stuck together with glue and I had to tear them apart with each new step. The pain occurs only during jogging, not in everyday life. Lack of fitness cannot be the reason, since I ran long distances without problems before switching antibiotics. I have also tried stretching the respective muscles before running, but that does not help. I can only think of co-trimoxazol as an explanation, since the package insert mentions muscle pain as a very rare side effect. Could that be the cause? Is it harmful if I run nevertheless, at least the 2 km until the pain becomes too severe? Is there anything one can do about it, or is switching antibiotics again the only solution? I am reluctant to give up running due to the good training for the lungs. Many thanks in advance. S.
14.02.2012
Money and CF
Hello, I would like to know why there lacks so much money in the fight against cystic fibrosis, and how to fix it ? Thank you in advance.
14.02.2012
Mycobacterium abscessus
Dear expert team, a friend of ours has CF and has been colonized with Pseudomonas aeruginosa for quite some time. Now, a mycobacterium abscessus colonization came on top of that. My questions on this: 1. Which health effects can the mycobacterium have? 2. How high is the risk of infection for other patients? 3. What are the sources of transmission? 4. How can the mycobacterium treated most sensibly? Many thanks in advance for your answer and for this fantastic website.
14.02.2012
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