Topics

new inhalative treatment
Hello my daughter's doctor told her that a new aerosol would be placed on the market in early 2012. Can you tell me a little more? Is it an antibiotic, a mucolytic, ..... Thank you in advance for your reply.
02.01.2012
advanced research
hello, I wanted to find out the research against cystic fibrosis, which projects could emerge soon? and then at what stage is gene therapy? thank you
02.01.2012
How do we get rid of MRSA?
Our daughter, one year old, CF, has been MRSA positive on and off (sometimes negative, but immediately after positive again) since a hospital stay about six months ago. My husband and I are MRSA negative. When my daughter was initially colonized, she was diagnosed with MRSA-induced pneumonia. This was treated with a strong antibiotic, which did help to get rid of the pneumonia, but not the MRSA. When she was admitted again later, this time with bronchitis, the doctors again attempted to tackle the MRSA with antibiotics. Unfortunately, this did not last very long. We have been at home for some time now (a good three months now) and were told that she would hopefully get rid of the germ here through her immune system. Unfortunately, this is still not the case. What is your advice? What else can we do? Of course, I am doing a lot of disinfecting in the house; everybody always disinfects their hands anyway. The laundry, etc. as well. Are there only i.v. antibiotics therapies, or also oral drugs that one could at least try? In my opinion, it gets more difficult to get rid of the germ the longer one has had it. Therefore it is very important to me to keep battling it. We would very much like to go to a medical rehabilitation clinic at the end of next year to learn a bit more about the disease, to make the food more palatable to my daughter, etc. Is there any chance at all? Is it possible for a germ to disappear just like that, after a year or so, without doing anything about it? I am at a loss! Unfortunately, our CF clinic somehow is not doing anything in this direction anymore.
02.01.2012
Nails
What is so special about the nails of children with CF? In one of the first contacts with our doctor he checked the nails of our baby son, but we forgot to ask him what’s so special about nails in CF.
02.01.2012
Turtles (tortoise) and cystic fibrosis
Hello, My granddaughter is in contact at her nanny, with tortoises (land turtles). Do they carry viruses? They are frequently subject to runny nose syndrome." Is this a risk for someone with CF? Thank you for your response.
02.01.2012
Holiday camp
Hello, Our 13-year-old son would like to spend his next summer holiday in a camp, or at least have a bit of an “adventure.” He is chronically colonized with PSA (encapsulated as well) and has to inhale Pulmozyme® and colistin on a daily basis. FEV = ca 95% and quite resilient. We cannot get accustomed to the idea of hygiene conditions in a camp (sanitation and cooling for the Pulmo…). We would prefer accommodation in a youth hostel as an alternative, or a language holiday abroad where he would stay with a host family. However, our son is not very thrilled about these options. Could you give us some ideas for a vacation and/or addresses of facilities (excluding medical rehabs) for an adolescent that would consider his “germ situation” as well as his drive for independence? Many thanks in advance.
23.12.2011
Vitamin D
Which value of vitamin D is recommended for CF individuals?
23.12.2011
MRSA
Can I get an injection into the joint if I had MRSA in the nose until recently but am clean now?
23.12.2011
uncertain cystic fibrosis diagnosis
I have a daughter of 11 years old, diagnosed with cystic fibrosis, 3 years ago(the first sweat test was 68 and the second one 62). Tests were performed ​​after the third episode of pancreatitis (she does not have respiratory symptoms). The genetic test revealed heterozygous genotype for IVS8-5T allele (intron 8 poly-T-TG: 5t_11TG/7T-11TG) with specification from Germany that this polymorphism usually is not associated with clinical manifestation of cystic fibrosis. In 2011 she had another pancreatitis. The sweat test performed after that revealed a value of 42 mmol / l ; after this test, the diagnosis of cystic fibrosis was excluded. She had a colangio-RM and was diagnosed with pancreas divisum. What do you think about the first diagnosis- cystic fibrosis- (genetic test was done for only 37 mutations)? Could she be only carrier of the disease and pancreatitis to be attributed to pancreas divisum ? She does not take anymore Pulmozyme.
23.12.2011
mutation R533X and R933G
Hello, I have heterozygous mutations R533X and R933G on each chromosome. To which class of mutations do they belong and what organ diseases do they cause? Thank you.
23.12.2011
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