Topics

Sweat test below 10 however symptoms in spite of this
Hello, We are parents of a 2-year-old boy. He has not really gained weight since he was one year old and has eaten not well. We found it striking, that his head tasted very salty and that he had bowel movements very often. A sweat test had been negative (not even in the borderline range) and we were told not to worry anymore. Now a vitamin A deficiency has been diagnosed and as we informed ourselves, this does i.a. occur in case of CF. As we nourish our child rather healthy and balanced (much vitamin A containing vegetables including oil) we cannot explain this. Furthermore, he has had recently recurrent airway infections, that we could handle well with herbal drugs and inhalation via pariboy. What else can we do in order to have real security that he is suffering from CF or not?
02.04.2015
Test for CF
Hello, I have a rather simple question, does every child, who is undergoing a sweat test, suffer from CF? We had two IRT tests that were not in the normal range and now we have to undergo a sweat test. Is there any hope, that we are not having CF? Thank you and best regards,
02.04.2015
CF baby and dog
Hello Our 4-month-old son suffers from cystic fibrosis. We have a dog that is a full member of the family but since the announcement of the disease we no longer know what precautions to take without going overboard. What precautions should be taken to avoid contamination of our son? For example: - Do we have to wash our hands after stroking the dog? - Should it be swimming more often? Thank you for your help.
02.04.2015
Laundry
Is it better to wash clothes of my 3-year-old CF my daughter in isolation or may it be mixed with the clothes of all the family?
02.04.2015
Vitamins and nutritional supplement
Hello, our child tends to an ADHD like behaviour. Often exceedingly restless, impatient etc., in many questionnaires about ADHD a diagnose has been assured. We have been at two specialists, one diagnosed undoubtly an ADHD, the other disclaimed... Because of the illness of CF I prefer the variant, not to give Ritalin additionally, especially because the diagnosis is unclear. Now I have read that krill oil is also helpful in case of ADHD - can I try this unproblematically? Do I have to give a dosage a bit higher than the recommended one because of CF (of course with Kreon)? Or could it also be a vitamin deficiency (especially C), that plays a role in here? Thank you for your answer
02.04.2015
Carbapenems
Hello, in the past time, an i.v. therapy (four times in 6 months) has been done several times in order to fight the bacterium Achromobacter xylosoxidans. This has been always very successful with Imipenem/Cilastin and 3-4 weeks no further intake of antibiotics had been necessary. However, again and again dyspnea, irritative cough and increased Achromobacter reoccur. Basically, there is no problem, as the i.v. therapy is still well effective and FEV1 returns to the good starting point of about 65% (even if under irritative cough the value is around 50%). However in daily life and for timely reasons, it is not easy to do an i.v. therapy every 4 weeks. The overall health condition is good otherwise. Is there any antibiotic drug from the group of Carbapenems that can be taken orally or via inhalation? Or could one inhale something? I remember, that Colistin for fighting the PA has also been recommended to be inhaled by the physician, long before the license for inhalation was given, even if on the package it could be read that it deals with the i.v. solution. Many thanks
02.04.2015
Brace
Hello, should CF patients disinfect their moblie braces daily, respectively can they be put into the vaporiser? Thank you very much!
02.04.2015
Bite splint
Hello, I am suffering from CF, am chronically colonized with Pseudomonas and have now recieved a bite splint from the dentist due to nightly teeth pressing. Even if the dentist knows about my CF, he said after I have asked him, that I would not have to pay attention to a special hygiene concerning the cleaning of the splint: washing with hot water would be enough. Now I am sceptic and I want to avoid that the splint becomes an origin of germs. I cannot put it into the vaporiser, as it stands only temperatures below 70°C. Which possibilities of cleaning are there and are my concerns justified? Many thanks for your efforts,
02.04.2015
MBL (mannose-binding lectin)-associated immune deficiency in case of CF
Dear CF Ecorn team, I have recently been diagnosed to have an MBL (mannose-binding lectin) deficiency (below 30ng/dl) during a hospital stay at a clinic in town. I have been admitted via the emergency doctor to the emergency departement of the hospital because of acute dyspnea and sputum, here a pneumonia has been diagnosed via a thorax x-ray. CRP value (0,09mg/dl) and the leucocytes (9,7/nl) have been too low for a pneumonia according to the physician, therefore further laboratoray values, among those also the mentioned MBL, have been investigated. The rest, also the blood gas analysis and the immune globulins have been normal except for IgM (290mg/dl), creatinin (1,6mg/dl), hemoglobin (9,8g/dl). I have only been diagnosed to suffer from CF for one year (R117H-5T mutation), before, my lung problems have been associated to asthma and bronchiectasis. With my CF I have especially problems with my lung, I am positive for Pseudomonas and I am 24-years old. Now to my acutal questions: 1. What does the MBL deficiency immune defect mean for me; consequences? Can something change therapeutically with that? Do I have to take soemthing into account concerning my clinical daily life? ...The clinician could not really give me an answer.... 2. If I have an infection, are the CRP values/leucocyte counts not meaningful anymore due to the MBL deficiency immune defect? It is not for the first time that I had an infection and the inflammtory values have been normal. Many thanks in advance, until now nobody could give me a meaningful answer. Best regards, J.
02.04.2015
Brita water filter
Many people nowadays use a Brita water filter at home to make the water lime-free. However, is such a Brita a good idea for people with cystic fibrosis? Because we’re talking about 'stagnant' water ... Thank you for your advice!
25.03.2015
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