Topics

Effective mircoorganisms (EM)
Dear expert team, We would like to use effective microorganisms (EM) in our house (e.g. for cleaning). We are wondering whether the bacteria contained in them constitute a risk for individuals with CF. Otherwise, the reports are generally positive. We are looking forward to your answer. Kind regards.
02.08.2012
Diagnostics during pregnancy, and termination
Is there an option of doing diagnostics as early as possible during pregnancy so that a regular termination would be possible, or would/will it always be a late termination? In other words, does one always have to have a stillbirth, or is there any method that will provide a result early enough to have a termination with curettage around the 12th week? This new blood test to diagnose down syndrome early – is there something similar for CF as well? My husband and I are both gene carriers and already have a child with CF.
02.08.2012
Looking for a further spasmolytic I do not know by now
Dear expert team, Before each colistin inhalation (I am resistant to other antibiotics by now), I am using currently the following drugs in a 4-day alternation: Atrovent® (ipratropium bromide) alternating with Berotec N® (formoterol) aerosol and Sultanol® (salbutamol) aerosol. In the mornings Spiriva Respimat® (tiotropiumbromide) two puffs and Oxis® (formoterol) two puffs. My problem is that I can only inhale colistin when the bronchia are extremely wide, since I get massive pulmonary bleeding otherwise (extended aortopulmonary collaterals/MAPCA with many coil embolizations that have been maxed out by now). My question: Is there another short-term effective spasmolytic drug that I could inhale for instance the first two days alternately with Atrovent® (for the third and fourth day) and respectively, on the fifth and sixth day with Berotec N® and Sultanol®? Of course, the new spasmolytic will have to show an effect despite inhalation with Spiriva® and Oxis® in the mornings as well as with the previously used short-term effective spasmolytics (Atrovent®, Berotec N® etc.). The receptors in my lungs get used to the respective spasmolytic agent already on the first day of alternation, so that I have to take more each day. With Atrovent® I am often at 2.2ml (500 µg/2 ml) already after 4 days. After alternating with Berotec® and Sultanol®, I am already at 3 puffs of Berotec® and 2-3 puffs of Sultanol® by the fourth day, with unpleasant side effects, though this is better than getting pulmonary bleeding or inhaling less colistin with shortness of breath and pneumonia as a result. I hope you can help me. I am not looking for a brand name but an active ingredient; my doctor will then tell me about the dosage. Kind regards.
02.08.2012
symptoms of cf
Is it readily identifiable at birth?
01.08.2012
moving
We are moving from California to Florida. Will the new humidity lead to the boys becoming ill on our arrival?
01.08.2012
Breathing technique for gymnastics with theraband and endurance training
Hello, Due to the helpful tips of your physiotherapist, I was able to optimize my inhalation therapy. Many thanks! Now I have a question concerning gymnastics with a Thera-band® and also concerning endurance training. Which breathing technique can I (43 years old) use under strain due to the CF and asthma? I am prone to forced expiration (exhaling on exertion) and have usually tightening of the bronchi after exercise even though I inhale one puff of Symbicort® before. How should I breathe during endurance training? And can I build up muscles with the Thera-band®, or do I have to lift weights for that? Many thanks for your efforts and kind regards.
01.08.2012
Vitamin D3
Hello, Due to a low vitamin D level (17,7ug/l, the recommended value would be 20), my doctor has ordered me (43 years old) to take vitamin D (8 dr.) in addition to the multivitamins I take in the mornings. However, during the time I take the drops, I get cramps in the fingers and toes as well as between the ribs, which are becoming painful with time. A change in dosage did not help. As soon as I stop the vitamin D, the cramps get better. I have tried several times over the years and it has always been the same. My doctor does not know why this is happening. Is it possible that it has to do with the changing calcium level, and how can I avoid this? Many thanks for your efforts and kind regards.
01.08.2012
Mutation compound heterozygous
Compound heterozygous delta F508/3272-26A->G Hello, I am the mother of a 6-year-old boy with the above mutation. My question: what exactly does “compound heterozygous” mean? And what does this mutation mean? Many thanks.
01.08.2012
Physiotherapeutic approaches
Hello, I keep reading in American CF forums about therapeutic approaches that are not practiced in Germany (anymore?), as for instance using the Vest® or tapping patients with special percussion cups. Upon inquiry, I was told that autogenic drainage was known but considered by far not as effective by Americans. Our (German) physiotherapist claims the opposite and says Europe/Germany is more advanced in physiotherapy. Are these just two opposing views or are there actually any figures/study results backing the different claims? Many thanks for your advice!
01.08.2012
Legalon®
Dear expert team, I would like to give my 5-year-old daughter, who has CF, Legalon® to support her liver. The package insert says that there are no tests for children under 12 years of age available and that one should therefore avoid the drug for them. Can I give it to my daughter? Do you have any experience with it? Kind regards.
01.08.2012
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