Topics

Colonization of chestnut trees with Pseudomonas
I have read an article in a German newspaper from 11/15 about trees. There it was mentioned, that chestnut trees are colonized with Pseudomonas in the area around Dresden (city in the east of Germany). Can CF patients get colonized and which kind of precaution measures should be taken?
20.01.2016
Sweat test in case of food intolerance and atopic dermatits
Hello, my daughter has had a sweat test last week. The result was at 32. Is that still in the normal range? I have to mention, that she has an atopic dermatitis and a food intolerance. Cow's milk (step 3), chicken egg (step 4) and peanuts (step 3).
19.01.2016
Water ionizer
Dear expert team, my husband likes to buy an electric water ionizer for our drinking water (s.www.aquion.de). According to the company, one gets than a healthy alkaline drinking water, that is free of all pollutants and rests of drugs, that is said to be especially suitable for CF patients due to the mentioned features. A possible contamination with germs is excluded if the filters are changed regularly. Is such a water suitable for our daughter (4 years, CF) or would you rather dehort from using such a device? Many thanks and best regards!
19.01.2016
Lynovex (Cysteamine)
Dear team, while surfing in the Internet, I came across the above mentioned candidate that is acutally in Phase IIb. I was not able to find anything about it on the German CF websites. The pharmaceutical newspaper [German newspaper] reported in January 2015: “The experimental antibacterial substance NM001 (Lynovex®) is effective against gram-positive and negative germs, that are associated with CF, like Pseudomonas aeruginosa or Burkholderia cepacia. It prohibits furthermore the formation of biofilms, that lead in CF patients to persistent and antibiotic-resistant infections of the lung. Additionally the small molecule NM001 had a mucolytic effect in vitro and ex vivo. Actually, the molecule is in phase IIa of clinical investigations (1,4).” Source: http://www.pharmazeutische-zeitung.de/index.php?id=55785 On the 38th European CF congress in the middle of the year, positive data was reported from phase IIa. Source: http://www.novabiotics.co.uk/blog/2015/06/positive-lynovex-phase-iia-data-presented-at-the-38th-european-cystic-fibrosis-symposium Question: Is this molecule a mucolytic substance or an antibiotic drug? Do you have further information about this drug candidate? Many thanks for your efforts and best regards,
14.01.2016
Alimentation
Hello, I am a mother of a three-year-old CF child. For 15 days, it's difficult for him to eat. I wanted to know if it's normal or if I should consider another nutrition? Thank you.
14.01.2016
High fat diet
Hello, CF patients must have a high fat diet. However, can they take any kind of fat? Should one prefer vegetable fats rather than animal fats, raw rather than cooked fat? Quantity OK ... but what quality? In advance thank you for your reply.
14.01.2016
querry
I am starting my pregnancy and according to the doctor’s suggestion I and my husband were tested for >98% of CF mutations at Horemio. The results show that I have a change at the sequence T854T and my husband two changes at the sequence 1716G/A and 4521G/A. I would like to know if the baby inherits all three changes, is there a chance of suffering from CF? (In case there are no other mutations, since it is impossible to exhaust all possibilities). Thank you!
14.01.2016
Transmission of Pseudomonas possible while jumping on the trampoline?
Hello, my daughter is 7 years old, suffers from CF and since the beginning of the year we fight with Pseudomonas, still hoping to be able to erdicate it again. Now my daughter does trampoline jumping in a sports club for a short period of time. At the last time it came out, that for 30 minutes, the older jumpers are already overlapping in the small gym to warm up. They run around the trampolines while my daughter is still jumping on them. Now there is also an older girl with CF under the trampoline jumpers. How possible is a transmission from one human to another? Should I get my daugher 30 minutes earlier in order to avoid a meeting of the two? My daughter whould then be in the gym for an hour and could do another half an hour if she likes. Or is there no risk in case of using the gym together if direct contact is avoided? I am insecure because of the worry to get the other girl infected or to be reinfected oneself, if we hopefully will get rid of it again. Many thanks for your answer
14.01.2016
Target values for pancreatic elastase in case of CF
Dear ladies and gentlemen, I would like to ask a question. Probably you could help us? Shortly about the background: We are parents of a 2.5 year-old happy daughter with CF. Our pediatrician (who is not part of our CF center team) directed the investigation of a stool sample of our daughter, after she listened to a talk of Prof. Ellemunter, that we also attended. She would like to have the value for the pancreatic elastase measured. We favour this very much, especially as gastro-intestinal investigations do not seem to belong to the standard investigations of our CF center, according to our impression. Unfortuantely our pediatrician has not the target values that were reported by Prof. Ellemunter as to be the aim. Could you help us in here further? We would be very pleased about an answer.
14.01.2016
Antibodies
Dear expert team, I have a question on the topic "antibodies"! I read from former answers on the topic that if one cannot find antibodies against certain germs (e.g. Pseudomonas) respectively one cannot find any germs either, one can suppose a successful eradication. However my CF center has always told me, that if a colonization, no matter if with Pseudomonas, Staphylococcus aureus, Aspergillus etc., took place and antibodies have been produced, they could always be detected. The version, that only if the antibodies are negative again, one can assume a successful eradication, is new to me. Please help clarifying this! Many thanks, I.D.
14.01.2016
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