Topics

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
Rhinitis and antibiotics
Hello, my 3-year-old son with CF has a rhinitis for 4 or 5 days; since yesterday, cough became productive, while the nose dries. He also began yesterday to inhale with Pulmozyme® (rh-DNAse). During the physiotherapy session yesterday, the physiotherapist got a little sputum, but from nose, not from bronchi. My son has physiotherapy twice a week, and no fever and no loss of appetite or special fatigue. Is it necessary to put him on antibiotics or to increase physicotherapy sessions? Or should we wait to see if the rhinitis stops? Thank you in advance.
10.12.2014
Cystic fibrosis and cigarettes
Hello, I am a mother of a 15-year-old teenager who has cystic fibrosis. I have just learned this morning that last week, she smoked two cigarettes. I wanted to know what can be the consequences of her gesture. I am enormously put under stress. Thank you for your answer
10.12.2014
aquarium in college
Hello, Our team was questioned by 2 families: their CF children are schooled in the same middle school (college, but different levels & classrooms) and they frequently - at the rate of 2 hours in sequence (1 - 2 times / week) - attend a lab of biology (about 20 m2) with presence of 3 medium-sized freshwater aquariums. The maintenance does not seem to be made regularly. Is there a real and higher risk compared to the usual risk of Pseudomonas contamination in the environment? Thank you in advance
10.12.2014
hygiene: toothbrush
In your answer about hygiene and toothbrush (see http://ecorn-cf.eu/index.php?id=65&L=8&tx_expertadvice_pi1%5Bshowitem%5D=3141&tx_expertadvice_pi1%5Bsearch%5D=toothbrush) you propose to change it every month and after antibiotic treatment. Why do you propose a change specifically after antibiotic treatment? For children who are in continuous antibiotic therapy, is a monthly change enough? Thank you in advance,
10.12.2014
Child care worker with Pseudomonas - CF child in institution
What has to be taken into account if a CF child enters an institution and a child care worker had already had the Pseudomonas germ herself? Is she a danger for the CF child?
10.12.2014
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