ABPA therapy - alternatives to cortisone
In case of ABPA (allergic bronchopulmonary aspergillosis): are there any alternative therapies to cortisone? If there is no other possibility, what do I have to pay attention to in case of my daughter ( 9 1/2 years)? Many thanks for your help, Yours sincerely,
Mould in the appartment
One week ago, I discovered mould at the wall of the appartment. In the room of my daughter. The house management treated it superficially and the wall was repapered. My daughter suffers for months of a sore throat in the morning and often of pain in the joints. We have often been to the doctor, however, he could not find anything. Question 1: Can the sore throat and the pain in the joints be caused by the mould? My son, living in the room next to my daughter suffers from CF. Question 2: Is is sufficient to treat the mould on the wall superficially and to repaper the wall? Are the mould spores eliminated completely by this and can not do any harm to the children? I have been told several times that the mould will come again, as soon as it will get cold and humid again. When is the mould going to be harmful? Only if it is visible as black at the wall or before that? Sorry, these are more questions, but this is very important to me. I am considering leaving the appartment. Many thanks for your efforts, Yours sincerely, a concerned mother.
Convalescent care with MRSA
How do I get convalescent treatment despite the suffering from MRSA? My nine years old daughter has CF, PSA probably since she was born, MRSA since two years. We, the parents, are physically and mentally down, our nine years old is overstrained by this situation and her school marks have deteriorated, our little one (7 years old) is suffering from pyrosis, fear of loss, nightmares, etc. We have been advised against going to the Black Sea in order to avoid further colonizations! SOS we need a “time out” urgently.
Microbial situation at the Ostsee.
Dear Expert team, until two years ago, our family went with our 13 year old son, who is P. aeruginosa-free, to Usedom for vacation. In 2006 it was very hot, the sea seemed to be not clean and at that time the bacterium Vibrio vulnificus was detected which led to the closing of several beaches. When I told a doctor that we have a CF child, he did not recommend a vacation in Usedom. We went into a sea Institute and we were surprised that the salt content of the east sea is only 1%. Here is my question: what about P. aeruginosa in the east sea with its low salt concentration compared to the North sea (3% salt)? Furthermore, there is little tide in the east sea. P. aeruginosa is also present in the Mediterranean sea. Is it better to mae vacation at the North sea or at the Atlantic?
Pets and Lung Transplantation
I have a question: Currently, I am in a difficult situation. I am about to get myself a dog because I always wanted to have one and now I am a house-wife and finally do have a lot of time for the animal. Furthermore, I am widowed and very lonely since December. My psychologist recommended me to get myself a pet. I would like to get myself a little dog from the animal shelter. However, I have been listed for transplantation for approximately half a year now! Is it a problem to have a pet (for example a dog) after a lung transplantation? My (transplantation-) doctor in charge has never said anything against the "risky sport" of horse back riding, that I am practicing as well. But I am just not sure as far as pets are concerned! Please help me!
Probability of outbreak
Dear experts, I got the information yesterday that in case of my dauhgter (7 months) 33 mutated genes of rh117 have been detected. Test (OLA POR). She has been named as a healthy carrier of the gene defect. She is told to do a sweat test now. What does that mean? Can this illness break out? Or only if both parents have inherited this defective gene? Or is only one parent necessary to evoke the illness to the child? (I do not know at the moment, if we both parents are carrier or only one of us). I only find information that both parents have to be carrier for the child is going to suffer from the illness and is not only a carrier. In case the sweat test will be positive, does that mean that she is already suffering from CF or can she only be a healthy carrier in spite of this? How is it really? I am very afraid and would welcome a quick answer. Thank you.
Tablets, for boy age 3 years, suffering from Cystic Fibrosis
Q/A not relevant for the European Archive as it dealed with the special availibility of two drugs in the UK.
adherence of patient to treatment
Sweat chloride test
Hello. I work at the Pediatric department in Handlova Hospital, Slovakia. We have an old device for chlorides detection in sweat and I can not find any offer for a new one. I ask You for any help and an address where we can buy a new advice for pilocarpine iontophoresis. If it would be possible add price as well. Thank You in advance for answer.
Lithuanian Cystic Fibrosis Society
I am new president of Lithuanian Cystic Fibrosis Society. My name is Vilma Narkuniene. All who want to take part in activity of Lithuanina Cystic Fibrosis Society or keep company, please write or call for me by phone 8 684 14303.
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