Topics

Important BMI
My daughter aged nearly 4 years (June) has an BMI of 18. 95 cm for 16,1kg. For a long time, she had a lower weight curve than normal, the CF center recommended us to give her high calorie meals. But now I wonder if the dose of Creon 12000 (1 morning, 3 afternoon, 3 for snack and 3 evening) is not too much?
08.04.2016
Frequency of care outside infection phases
Hello, I am contacting you to compare practice in France and in the Czech Republic concerning the frequency of care, especially nasal aspiration. We live in the Czech Rep. and our 5-week-old baby was diagnosed to suffer from CF. We have 3 sessions per day (breathing physiotherapy, inhalation and nasal aspiration) as a precaution. Our child has not congested roads and resents the nasal aspiration. We want the best for her but we wonder if having nasal aspirates 3 per day (and inhalations) is no exaggeration as there are no obvious signs of the disease? Is this practice common in Europe in general? Thank you in advance
08.04.2016
Replace a gene with a special method
Hello, is the CRISPR / cas9 method envisaged in cystic fibrosis? Are trials going on? Thank you
08.04.2016
Sailing school discovery
Hello, our 8-year old CF son will go in May with his class for a discovery sailing trip on Lake Thau, near Sète (France). The problem is that they will sail with little "optimistic" on the lake and not on the sea. The CF Center has not banned but said that it was not the ideal destination. From our parents point of view, the risk / benefit ratio confirms his participation in this collective adventure with his friends. Nevertheless, we would like your advice on the precautions and warnings related to this particular context, knowing that his Dad will be present on site and may take a number of specific constraints. Thank you for your help!
08.04.2016
Modifier genes ?
Hello, for several weeks, I hear a lot about modifier genes. Could you tell me more? How far is the research? Have they been identified?
08.04.2016
CF and a child with auto-immune hepatitis
Hello, my daughter is 7 years old and suffers from CF, in her class there is a child who suffers from an auto-immune hepatitis. My daugther has already had Pseudomonas aeruginosa in the throat swab several times, is there a risk for transmission? Or is there in general a danger for one of the two children? As a child with auto-immune hepatitis, does one have another germ spectrum than healthy children? Shall the children go into different classes? Many thanks for your advice.
18.03.2016
Sterililzing with vaporiser: new study
A friend of mine wrote recently to the author of a study in Austria, in order for ask her about the security of a certain, very popular vaporiser (Mamajoo with drying function). The lady answered firstly, that the Mamajoo had been tested and was a hatchery for germs (via the drying function the surrounding air is blown on the inhalation devices); and secondly, she said, that the best method would be the following: to sterilize the inhalation devices and to let them stand wet in the vaporiser until the next usage and then use them again. The study of question (http://www.cysticfibrosisjournal.com/article/S1569-1993%2815%2900167-8/fulltext) tested sterilizing protocols, hereby of course devices have been used. Mamajoo had also been tested among others, was however not the important message; more likely the important message was, as mentioned above, that the best way of sterilizing inhalative equipment was to let the sterilized eiquipment stand wet but closed in the vaporiser until used again; instead of the known dogma: only use dry inhalation devices! This caused great reactions in our patient group, because this is opposed to the advice we got until now. Therefore it would be great, if you could give us a well-informed adivce on this. Many thanks in advance,
18.03.2016
Snake and CF
Hello , My 11 years old CF daughter has a heated terrarium in her room with a spot that contains a snake. The litter is purchased in a petshop and there's inside a container with water regularly changed. What is the risk for her to have Pseudomonas aeruginosa? Knowing she would not put her nose in the container, and that's not her who changes the water. But she often cares for the snake and puts it up to her shoulders so close to her face. The snake goes in the water when "travelling". Thank you for your reply .
18.03.2016
Drinking bottles
My daughter is 7-years old and suffers from CF. I am insecure concerning the usage of water bottles. Due to the supposed colonization of germs in case of refill-bottles, I have changed to one-way 0.5 litre bottles (only for usage in school and during sports). The bottle is emptied within one day and at home we drink only water from glas bottles. Do I have to worry because of chemicals in one-way bottles?? Or is this the smaller problem? Many thanks for your advice
14.03.2016
R1066H
Dear ladies and gentlemen, our son has been diagnosed to suffer from CF. It deals with the mutation R1066H, a rather seldom mutation. Do you know the clinical course and does it belong to atypical CF? Many thanks for your answer. Best regards, M.
14.03.2016
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