Topics

Bronchiectasis
My 14 year old son with CF was just told he has Bronchiectasis; is it reversible? The drs aren't doing anything about it?
24.03.2014
hot tubs, jacuzzi, spa baths
We need to explain to friends why our grandsons (11 and 14) are not allowed to go into hot tubs, jacuzzis, spa baths etc. Please could you recommend research documents (if any) or any written material to help us put this danger to our grandsons over clearly to anyone who may have care for them. Thank you - jennifer mcneil
24.03.2014
nutrition in infant with cf
Dear doctors, my 4 months old daughter had been recently diagnosed with cf. Sheis pancreatic insufficient, as diagnosed by her doctor. Kindly advise on the following: 1. her stools are still very loose, fatty and smelly regardless she takes pancreatic enzymes with every meal. Since enzymes intake, she started to gain weight and is constantly growing every week. Will she always have fatty stools, is this normal while she takes pancreatic enzymes? 2. when can I start to diversify her food, is this recommended for infants with cf? Thank you, A.
24.03.2014
DNA test/risk of passing CF on to children
Hello, me and my wife plan to have children. As a CF causing mutation has already been detected in my DNA, is there a high risk that our children will come down with CF? My wife was born on the Philipinnes, I am European, and it is very hard to find information regarding the relevant mutation that should be analyzed in her DNA - does it make sense to check her whole CTFR gene? Thanks from Austria T.
24.03.2014
Pancreatic insufficiency without steatorrhea or other symptom
Hello, my child was recently diagnosed with CF and pancreatic insufficiency (pancreatase < 50) at age 12. He used to exhibit the symptoms described for pancreatic insufficiency (fatty and many stools, smelly flatulence, tummy aches etc) to some degree until four years ago, but upon regular administration of probiotics for two years followed by a change in diet (gluten-free) all symptoms disappeared. We were now prescribed Kreon and I am wondering what this treatment will actually achieve in my child?
24.03.2014
Rivers & CF
How high are the risks & what are precautions we should take with a toddler cfer and playing in a river? Specifically the Guadalupe/Comal? High vs low?
24.03.2014
mrsa and cystic fibrosis
Hi my daughter is 12 years old and has cf , in the last year she seems to be contracting and growing mrsa on her cough swabs. The first time this happened was about a year ago and she was treated with a two week course on the antibiotic-RIFAMPICIN and a body wash and nasel spray which she used for 5 days. 10 months later she grew mrsa again on a cough swab and was prescribed a 2 week course of DOXYCYCLIN AND FUCIDIC ACID, no body wash and no nasel spray- this was something that i questioned at the time, knowing how and where mrsa lives. We also as a family had our selfs checked for mrsa and the tests came back negative. Then again three weeks ago her cough swab tested positive for mrsa and she has been prescribed the DOXYCYCLIN AND FUCIDIC ACID, with no body wash and nasel spray. I have decided to ask for a second opinion now, on the type of anitbiotic being prescribed and the fact that there is no body wash and nasel spray. When she had the first prescription RIFAMPICIN plus body wash she seemed to get rid of the mrsa. I realise that the mrsa bug this time has been decribed as being resistant to RIFAMPICIN. but seeing as the mrsa has returned so quicky I am doubtful about her having DOXYCYCLINE and FUCIDIC ACID minus a body wash again and it being effective. She also had to have a blood test at the begining and the end of the DOXYCYCLIN AND FUCIDIC ACID to monitor her liver function. The results of this test were, that her liver function on those antibiotics was fine. However it has been made apparent that they are a heavy course of antibiotics which i would personally like to avoid giving her if it is not looking like it's is getting rid of the mrsa. Can you suggest any other effective antibiotics and do you think she should be having a body wash and nasel spray?. I feel that really the whole family should be having a body wash whilst she is on the antibiots to prevent a cycle of colonisation, which is what i think we may have happening. I am also keen for the family to do cough swabs to see if we are carrying it in our lungs after reading the article below which i found on this site. Question If a CF patient is culturing MRSA, how high is the risk of transmitting MRSA to a partner(without cf) through kissing and sexual activity? Answer Dear Questioner Staphylococcus aureus is a type of bacteria that is commonly found living on the body surfaces of many people- it can colonize the nose, throat, armpits and other body areas without causing disease. In recent years, S.aureus has been identified which is resistant to many types of antibiotics which would commonly be used to treat infections, and this is called Meticillin resistant S. aureus (MRSA). MRSA is found only rarely among people in outside hospitals- however, it can spread rapidly within healthcare settings or in cases where people live and have close contact with each other. In most cases, acquiring MRSA probably won’t result in disease in that individual. However, if the person has a wound, or other skin breaks, or has an underlying medical condition that might make them more likely to pick up infections, it could cause a serious infection. It is possible for people who have MRSA (CF or non-CF) to pass it to household contacts or to people with whom they have close contact- even pets!- and recent studies have suggested that MRSA can be spread from the respiratory tract by coughing, sneezing and kissing. Partners of people with MRSA are at increased risk of transmission, probably because of increased bodily contact1. However, unless those contacts have a medical condition, its not likely that they would develop an infection but there is a chance that they become colonized with MRSA. This colonization may well be short-lived, but might be long enough to pass it back to the person with CF- this is particularly a problem if the person with CF is undergoing decolonization (i.e. a course of antibiotics designed to get rid of the MRSA). In order to avoid a cycle of colonization being established, it would be important to consider some important, but simple, infection control measures2. Regular showering using a medicated wash, containing chlorhexidine and handwashing, particularly after coughing or sneezing, by all household contacts may reduce the risk of colonization- alcohol based hand rubs may be particularly useful in this case. In addition, regular changing of bed linen and bed clothes may cut down the risk of MRSA spread. Also can you tell me what effect the mrsa in my daughters lungs has on her health and particularly on her lung health? .It seems there are no real answers, and it is all a bit of a stab in the dark. Obviously I would like to irradicate the mrsa, but i would like to go about it effectively avoiding intravenous antibiotics. As we have been able to avoid these so far and her health is good. Many thanks. Kind regards and i look forward to your reply.
24.03.2014
Living in Athens with CF Recommended ?
I have an 11 year old daughter with CF and we live in Abu Dhabi, UAE, but we may come to live in Athens, I am worried about the air pollution, we will be living in the hills outside Athens. Also Gala has just started to take Ivacaftor as she has the G551 mutation, is this going to be available to her in Athens? thanks for your help J.
24.03.2014
Differences between CF Centres
Hello Will there one day be a "consensus" between CF Centers? Indeed through testimonials from parents of CF children it’s noticable that each CF Center allows or prohibits some activities or travel. Opinions may even differ in a given CF Center ... Why has one child the right to go to Tunisia and another is prohibited from Portugal ... and it’s the same thing about pool ... horse riding ... Those activities are prohibited by doctors in some CF Centers but allowed by doctors in other CF Centers who seem more tolerant with the families of patients. It’s not easy to navigate even if we know that each patient develops its own disease! thank you
24.03.2014
2 children with cystic fibrosis in school
Hello, Our child has CF and we live in a neighborhood where another child of the same age is also suffering from the same disease. The two children must start school at next beginning of term. Will it be a problem even if they won't be in the same classroom? Especially during the beginning and end of the class as well as recreation breaks where children can interbreed and necessarily use and touch same toys. Thank you
24.03.2014
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