Topics

Treatment in Kosovo
Hello, My sister in law and her husband have a 3 year-old, healthy daughter. In August 2007 she gave birth to a son who was suffering from CF and died in December 2007. They like to have more children, now my question: Is there a possibility of prenatal diagnostics? Can this be done in Kosovo? Are there medical European networks that could also help persons concerned in Kosovo? Apparently, there are such possibilities in Skopje (Macedonia), but they are supposed to be very expensive. I am looking very forward to hearing from you soon since the couple suffers very much from this situation and has not received clear answers to their questions. Thank you very much for your effort. Best regards,
24.04.2008
Exacerbation
How I can know, that disease exacerbated? What are the symtoms of exacerbation?
24.04.2008
Airway clearance vest
Hello, We have a year-old girl with CF. I read that in the USA they use airway clearance vests to loosen up mucus from airways – see description attached. „The ThAIRapy Vest is a mechanical device which uses high-frequency chest wall oscillation to provide airway clearance therapy. The device consists of an inflatable vest linked to an air-pulsed generator. The air-pulse generator creates pulses within the vest which oscillate the chest wall and create air flow within the lungs. Air flow created by the ThAIRapy Vest dislodges mucus so it can be cleared by coughing.“ Response from CF patients are positive: Easier breathing, fewer infections, shorter sickness. Do they use equipment like this in Europe too? From which age do they recommend it? What does it cost? Is it possible (in the Czech Republic) to apply for a contribution from my health insurer? Thanks in advance for the answer.
23.04.2008
Atypical CF
I would like to ask: Since September my daughter has constantly been sick. She has an increased temperature, headaches, sore throat, stomach pain and frequent diarrhea. She has an atypical CF. Our pediatrician has said that she always has some virus and has prescribed her Stoptussin against the cough and nothing more. This has gone on since September. She has constant stomach pain and you can even feel a small bump on her belly. She had an appendix operation 6 months ago and still has not recovered. So I would like to ask for advice what I should do with her and when antibiotics should be prescribed for her if this is constantly repeating. Thanks for your advice.
23.04.2008
Dosing regime antibiotics, Differences Ceftazidim vs. Piperacillin/Tazobactam
My son has CF . For the past 32 years he was successfully treated by i.v. antibiotics on a yearly basis. During i.v. courses, his CF outpatient clinic prescribed ceftazidim (Fortum) every 8h and amikacin once per day. My questions: 1. Would it be adventageous if he could receive his antibiotics by continuous infusion therapy over 24h? 2. Given that his Pseudomonas aeruginosa is sensitive to both ceftazidim and piperacillin/tazobactam, which antibiotic agent should be preferred as combination partner with amikacin?
23.04.2008
Aerugen
Is the vaccine „Aerugen“ still available in Switzerland?
23.04.2008
Desire to have a child despite CF
Dear expert advice, Since more than a year my boyfriend and I concentrate on thinking about the topic "family planning". I do have CF, but being a competitive athlete I have a good lung function and also in other aspects I do not have any constraints. Nevertheless, I did not succeed in becoming pregnant yet. The visits at my CF out patient clinic and my gynecologist have not been satisfying due to missing knowledge in this field: The CF ambulance has a lack of insights and information about gynecological issues and my gynecologist does not know much about Cystic Fibrosis. Thus, my CF doctor was able to give me the green light for a pregnancy as far as my health is concerned (my boyfriend's genetic test was also negative) and my gynecologist could not diagnose any organic impairment (I have a regular menstruation cycle and everything is okay as well). But until now nobody was able to tell me which possibilities there are to increase the fertility of CF patients. My boyfriend currently undergoes a detailed check-up. Should everything be okay with him one can assume that my cervical mucus is impermeable to sperm. Is there a possibility to make it more fluid in order to raise the probability of becoming pregnant? The next possibility I know is insemination. But at which point of time should this be tried? Which form of insemination is most promising? Which costs have to be calculated and are they maybe covered by the health insurance? Under which circumstances? Many questions! I hope you can answer them and are looking forward to your message! Best regards, Sarah
23.04.2008
Small outpatient departments
We want to switch to a (small) outpatient department close to our place of residence. There, we have been told that the smaller outpatient departments would have to send their patients to a bigger outpatient department twice a year, so that it would be useless to switch. Is that true?
23.04.2008
Pregnant?
I am 32 years old now and I know that my husband would like to have a baby. Of course me, too! But I am a bit more sceptical and I am afraid that I am going to do harm to the baby during pregnancy as I am taking drugs since my fifth year of life: 8 mg prednisone 500 mg theophylline L-Thyroxin 100 (drug: levothyroxine) Viani forte 1-0-1 (drugs: salmeterole and fluticasone) Verapamil 1-1-1 Sultanol (drug: salbutamol) Atrovent (drug: ipratropiumbromide) DNCG (drug: chromoglycinacid) Aarane (drugs: chromoglycinacid and reproterole) However, I am suffering only of "asthma" but I have to inhale every day, too, and have to do physiotherapy in order to come loose the mucus. I am getting along well and my husband is supporting me all the time, but this sorrow he can't take away from me this time. Probably you can tell me if those drugs coud do harm to the baby??? Many thanks in advance,
23.04.2008
Kindergarten with CF/Pseudomonas
Hello, I have registered my daughter with CF for kindergarten. Now, the kindergarten possibly does not want to admit her because they cannot supervise the enzyme substitution and guarantee to avoide problematic germs (Pseudomonas). This is not only regarding the toilet but also the usage of watercolours, floating Play-Doh® [in German: Wasserknete], glue (that has to be mixed with water and is used for several days), wading pool, fountain and streamlet in the garden of the kindergarten. Does she really have to dispense with all this?????? What about the two toilets? They do have lids but the toilets are only separated by little dividers. Can it happen that the water "splashes over"???
23.04.2008
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