Topics

Care of CF people
Hello, I wanted to know how the people affected by the cystic fibrosis are taken care of? Thank you
17.12.2014
L558S
Hello, Could you give me some information about this mutation? Is it frequent worldwide? Do the homozygotes have a particular phenotype? Thank you
17.12.2014
Chronic colonization with Staphylococci
Dear expert team! Request for help for a very worried mother: my daughter (16 years old) had until about one year ago, a very good lung function (97%) and a very good general condition. As she is also an extreme allergic patient, one has the creeping worsening of the lung function not regarded to be so dramatic. In summer 2014, we have however decided to do a bronchoscopy not to miss anything at all (lung function 84%). This looked really horrible - mucus everywhere - germ finding Achromobacter, Staphylococci, Haemophilus (no Aspergillus) - admission to iv-therapy - after iv-therapy no change of the lung function - on the contrary, middle and small airways nearly completely closed - and at once Aspergillus in the sputum - therefore suspicion of ABPA and therefore start of anti-fungal therapy (itraconazole and cortisone) for 3 months - however acutally germ findings still unchanged - that means chronic colonization with Stapyhlococci by all means, Achromobacter would allegedly not going to disappear anymore anyway - now they want to start additionally a long term treatment with flucloxacillin: My worry: long term treatment in this high dosage (is given in double dosage as normal) - what do we have to take into account? How often controls of the sputum because of aquisition of Pseudomonas, how often control of liver enzyme values respectively kidney values? What about the growth of fungi, then? Does one do long term antibiotic therapies in case of chronic colonization with Staphylococci? I am really despaired and have in the meantime really given up the hope to bring my daughter again on the good lung function values! I know that a therapy is always a double-edged sword - for one thing good, for the other bad - however I do not want to miss anything, if one could do probably it another way! Thank you while waiting for your appreciated opinion.
17.12.2014
IV worsening of the saturation
Dear team! I am suffering from CF and I am 48 years old. Since I was 25, I do regularly about 2 times a year an iv-therapy. Unfortunately, it is often like this, that the lung function stays the same, however the oyxgen saturation is going to be worse and worse at the end. I have however not the impression to have too much mucus. However I have rather the feeling, that something in the body is not really well changed anymore. Blood cell count is super, everything's o.k. ...the physicians are of the opinion, it could be stucked secretions....After 3 to 4 weeks at home, the lung function stays the same and the saturation does not go under 93% during normal walking...at the end of the iv-therapy drops at least to 88%...I do not understand it...just had 2 times 3 million units of colistin and 3 times 4 g of tazobactam/piperacillin for the iv-therapy....do you know this phenomenon? Do you have some advice? Many thanks to the team!!
17.12.2014
Acinetobacter baumanii
Hello, I have been informed from my CF center via the telephone, to have the above mentioned germ. It would be well treatable with Cotrimoxazole respectively with Colistin per inhalation. As I have no other symptoms except my chronic inflammation of the sinuses, that is always severe in this time of the year, I ask myself, if this is really sensible. The result came about 3 weeks ago. I have been told, that I do not have to do any additional hygiene standards here at home, either, e.g. physiotherapy etc. I am 52 years old, have otherwise often the finding of Staphylococcus, several times also the Stenotrophomonas and 2 years ago also the MRSA, and because of this I had to return early from the rehabilitation. The above germ is new for me and if I seach in google, it does not sound too good to me. I am curious about your advice. Many thanks
17.12.2014
Enzymes
Dear ladies and gentlemen, my daughter has Cystic Fibrosis. She has DF508 and G542X. She is 3.5 years old. We live in Santigo, Chile. She was born with meconium ileus and has been operated within 24 hours after birth. She got an ileostomy. in October, 2011, her bowel has been reanastomozed successfully. At the moment she is doing quite well, even if her cultures of the lung show from time to time Stapyhlococcus aureus. My daughter got in her first year of life intravenous treatments, combined with oral antibiotics. But instead of getting rid of Staphyloccus, the therapy in a public hospital had as a consequence, that she got additionally E. coli. She has no symptoms at the moment, no cough, twice daily physiotherapy. My questions is about the enzymes. She is taking Panzytrat® 10.000 at the moment, 7 capsules per meal, with 4 meals per day. She weighs 14kg. She has bowel movements at least once daily, sometimes 2-3 times. The consistency seems to be normal, and is not fatty. To adress the dosage: she is taking 70.000 IU lipase per meal, what is in my opinion much for her weihgt. The leaflet of Panzytrat® advises a maximum dosage of 10.000 IU lipase per kilogram body weight, whereas my daughter takes 20.000 IU. On the other hand it is difficult for her in spite of the high dosage, to gain weight. In Chile, only a single physician recommended me to keep this high dosage and even to increase it, in case her weight should again decrease. All other physicians are of the opinion, that the dosage is simply too high and I have to reduce it. I have even tried this, with the result, that my daughter stopped gaining weight. What is your opinion on the dosage of the enzymes? She is investigated two times a year with ultrasound and none of the results showed blockage of the bowel or the like. Her pancreatic insufficiency is absolute. Furthermore, it is not clear to me, how long the enzymes can have an effect after intake. A meal for her lasts about 45 minutes. What do you think could be a better alternative? To give all enzymes at the beginning of the meal or half of them at the beginning of the meal and the other half in the middle of the meal? How long are the enzymes effective after intake? Is yoghurt suitable for the enzyme intake? I do this varaint for breakfast and in the afternoon, as my daughter does not like milk. I would be very glad about some information. Yours sincerely,
17.12.2014
Painting
Hello, I wondered if the liquid paints with water used by children (watercolours) could contain Pseudomonas aerugionsa? Is there a deadline after opening? Thank you
10.12.2014
wearing a mask
Hello, wearing a mask is a practice of good conduct to implement in the hospital: is there a particular leaflet of hygiene so that the Secretary of the CF Center can put masks in the envelopes for convening of consultations, so that patients can enter the hospital safely?
10.12.2014
Clinical trial genetic therapy
Hello Do you know if the UK clinical trial "genetic therapy" is closed and what are the first conclusions? Thank you
10.12.2014
Serrapeptase
Hello, I heard about serrapeptase which could be effective for the symptoms of cystic fibrosis. I would like to have some information about this enzyme: could it improve the everyday life of my 3-year-old CF daughter? Has this enzyme got any side effects? Is it an interesting way for the treatment of CF? Thank you in advance for your answer
10.12.2014
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