Topics

Cystic fibrosis
Many children with CF have vitamin D insufficiency. Many of them have this problem even if they use vitamin D supplements. What is the reason of it? Regards, Justina.
12.05.2009
Information on health professionals involved in CF
I am researching CF and am wondering if I were a patient which types of health professionals would I come into contact with
12.05.2009
Lung transplantation
When should be done a lung transplantion in CF? What happens when a patient refuses or fails to find a donor for 36 years female?
12.05.2009
kreon for children
Hello, I am a psychologist and I have a client with CF and currently we are tackling the problem of the application of pills. Boy is 3 years old and refuses pills, although when they are given with something else. He takes some Kreon’s (I can´t make head or tail of it), I only know that they are big and bad to swallow, he is still so little. Can you recommend me some way of application of this drug for three years old boy, or some other acceptable drugs? His doctor said, there isn’t any other medication, I mean different form. Thanks for answer.
12.05.2009
Hemoptysis
Hello. I would like to find out about blood in the sputum. I am 27 years old with CF, with chronic colonization of staphylococcus and long-term high IGE levels. ABPA (Allergic bronchopulmonary aspergillosis) has been been repeatedly confirmed. Over Christmas I overcame a virus that was treated with antibiotics. The virus passed, the cough subsided (there was very little sputum), but I found breathing very difficult in the evening. My lungs burned in the evening and it ended with the coughing up of blood. The amount of blood was not great (cca. 1 ml.), but it was very unpleasant. I cannot keep my fear in check and start to shake all over... The physician prescribed Prednison 20 mg., which relieved the feeling that my lungs were stiffening and made me breathe better overnight, but hemoptysis sporadically appears in the sputum. It feels like I have a wound that has never healed in my lungs, and this is more intense under greater strain. Besides that, I take Vitamin K, Dycinon or Panba. I have read on foreign websites that some CF patients inhale epinephrine in the event of hemoptysis. My doctor has no experience with this alternative. I would like to ask: How do you proceed in the event of hemoptysis treatment? Must inhalations be limited, and if so, which medicines need mainly to be limited? At the same time, I would like to ask if mental strain can provoke hemoptysis. I personally can exercise as much as I want without difficulties, but I cannot sit in an air-conditioned room; I have problems in speaking for longer times or in working with chalk. Longer trips by car are also a major difficulty. In addition, I cannot go to the theater, films or restaurants… I always return with stiff lungs which leave me with a burning sensation. But when I go out to ride a bicycle or swim for an hour, this is not a problem. My FEV1 is 70 % and FVC is 75 %. What could be related to this, and what can influence it? Thank you very much for your answer. Best regards, Ingrid
12.05.2009
ESBL (Extended-Spectrum Beta-Lactamase)
My daughter (6 years old) is suffering from CF, her grand-grandmother has spent a long time in hospital, as her leg had been amputated. Now she is discharged home, but she has been diagosed of ESBL (Extended-Spectrum Beta-Lactamase), which should stay like this. She has had MRSA, too, however, it has gone away again. Do the same measures apply to ESBL as to MRSA? We were not allowed to have any contact to the grand-grandmother, and we were not allowed to have any contact to persons who had had contact to her, either. That means that we had been isolated from the family.
05.05.2009
tobramicin
Goodafternoon. My son has cystic fibrosis. In case of the exacerbation he is treated with antibiotics in Kaunas clinics. Pseudomonas is finding in him sputum. He is treated with amikacin and ceftazidim. I would like to known about possibility to use inhaled tobramycin. Why he not treated this drug in Kaunas clinics? I heard that in Vilnius clinics children with cystic fibrosis are treated with tobramicin. May be we can use inhaled gentamicin? But I heard inhaled gentamicin usually cause bronchial spasm.
05.05.2009
cystic fibrosis complicated with Pseudomonas aeruginosa
5.6 years old child diagnosed at 2 months old with CF. His doctor has finished all treatment schemes (Ciprofloxacin i.v., ceftazidime, ceftriaxone, hydrocortisone acetate, cefoperazone and sulbactame, aerosols with colomycine, sodium chloride, DNAse) He recommended a clinic in Italy. Do we have other possibilities there?
05.05.2009
Transmission of Pseudomonas aeruginosa
Hi! I have several questions with regard to the transmission of Pseudomonas aeruginosa. It is recommended that there shoud'nt be any plants in the room of the CF child. How large should be the distance between a window in the child's room and a source of P. aeruginosa (e.g., flower pot, or wet source)? Is it possible that an aerosolo can be generated and if so how? Is it allowed to put plants in other romms of the home which are used by the child (e,g,m bathroom, living room)? Many thanks!
05.05.2009
Tobi
Hello, I am a parent of a child with CF. I’ve got a question about the treatment with the nebuliser solution Tobi-300. I know that it’s strictly individual, but I am interested what are the criteria for treatment. If a patient has Pseudomonas aeruginosa in the lungs and has started treatment with Tobi, then can you tell me: 1. What is the minimal prolongation of treatment? 2. What is the maximum prolongation of treatment? 3. What tests must be run during the treatment with Tobi-300 and at what intervals of time? 4. If the patient feels good and Pseudomonas aeruginosa is not isolated in sputum at the moment, shall he stop taking Tobi? 5. Is there any other test to find out Pseudomonas aeruginosa in the lungs that must be run upon a small child who cannot give sputum samples? A blood test? If there is something, please, write me. Best regards, S. A.
04.05.2009
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