Topics

Travelling by plane
Hello, we are planning a holiday on the Canary Islands with our daughter (actually 9 months, CF). Can we do this holiday without hesitation or does the about 4-hours flight present a great "danger" for her? Concerning e.g. the height, air-conditioning, germs, etc? Is she allowed to take a bath in the sea there and play in the sand? Her helath situation is stable, she has a fantastic development and the latest swab has been free of germs. We are planning in any case to inhale 2-times a day as is usual, there. Our out-patient departement recommended an "emergency antibiotic". What else should we take into account? Many thanks for your effort.
04.10.2010
Pain/ partially fever under antibiotics
Hello, I am 25 years old and have for 23 years now a constant colonization with Pseudomonas. Since then, I inhale constantly antibiotics, since 1995 I do 3-4 i.v.-therapies a year, in between Ciprofloxacin in a 2-weeks on/off therapy. In former times this was not a problem to me, I was able to life my normal life more or less during the therapies. For about 2 years now I have, however, differing side-effects according to the drug, like fever, strong headache and pain in the limbs, fatigue and partially erratic mood swings. These stop one or two days after the end of the i.v.-therapy. At the same time my CRP is always increased and is partially after the i.v.-therapy higher than before. For 2 months I take 2x600 mgs of Ibuprofen daily, the inflammatory parameters have become a bit better. Nobody can or is willing to explain the thing with the antibiotics to me, slowly my acceptance of the i.v.-therapy decreases. Can one react allergic to antibiotics in general (I have tested meanwhile 6 different ones), e.g. on the dead bacteria? Or is the reason that I take some for so long time in high-dosage?
04.10.2010
Pain
My daughter (CF, 18 years) has horrifying pain at her joints and "bones". They change from shoulders, neck, hips, legs....sometimes very strong, sometimes very weak. Now I have heard, that there could be a connection with CF. She can stand it sometimes only with painkillers. Where can I get some more information about a possbile connection?
21.09.2010
Sinusitis
Hello, I have CF and problems with the sinuses for one year. When would surgery be advisable or urgent and how does such an operation proceed, especially which risks could occur? Regards,
21.09.2010
Crumpled hands after water contact
Dear expert team, it seems to be that in CF-patients, hands get much faster crumpled in case of water contact then in healthy people (11 min). Keyword: Aquagenic Wrinkling of the Palms. Many children with CF are diagnosed troublesomely after many pneumonias, because a simple, for everybody recognizable sign of the illness is lacking, which is obviously present here. Would it not be desireable that this is gonig to be more public? Should this be passed as an "advice under parents"? Would parents be taken seriously who go to the pediatrician because their thin child, which is often ill, shows crumpled hands in water after 2 minutes? Many thanks in advance,
21.09.2010
Lactose intolerance 2
Dear Dr. Posselt, I thank you very much for your extended answer. Now I can probably better understand why my test results have been negative. Of course I have to take many drugs against an organ-rejection. Also the intake of antibiotics, especially Ciprofloxacin, is frequent, in case an infection is up-coming. The intake of lactose-free milk products or in combination with lactase tablets with lactose-containing food does not cause any problems in contrast to the intake without lactase-tablets. I had the blood-test performed at the clinic for dermatology and allergology at the medical school of Hannover, Germany. The laboratory finding PCR says: "there is a heterozygous mutation in the regulatrory region of the lactase-gen, therefore a clinically relevant lactose intolerance is unlikely." I would be very pleased if you could explain this statement a bit to me. Best regards,
21.09.2010
Lactose-Intolerance
Dear expert team, I suffer from CF, am 32 years old and have had a transplant of the lungs and liver nearly 3 years ago. I am doing very fine and I can follow my former full-time job again for 2 years now. However, I have an unpleasant problem. Since my transplant surgery I do not tolerate milk anymore (milk, yoghurt, white cheese). About 10-15 minutes after eating I have strong stomach pain, which does not occur from the fat content as I take enough Kreon. In former times I was able to consume such food in great amounts. The symptoms point at a lactose-intolerance and I have done a blood test and a breathing test. These have both been negative. Furthermore, I had an endoscopy of the stomach, small intestine and colon done, which turned all out to be without a pathologic finding. In case I eat lactose-free food or probably take lactase tablets, the problems do not occur. My question is, if the problems can occur due to the new liver, the immunosupressive drugs or due to the CF itself and therefore resulting lack of enzyme effectiveness (however though there are enough enzymes there) and what I should do now the best. Restarting eating the food again because there is no positive testing is for sure not a solution. Hope you have an answer, Yours sincerely,
21.09.2010
exon 13 sequence variant D727Y
Hello, in my daughter, the mutation exon 13 D727Y has been diagnosed heterozygously and in intron 8 the 7T-allel homozygously. Does that have any consequences? There are mutations however, which are not known already and not detectable. Is this CF or not? I would very much like to know if she suffers from CF or not in order to initiate a therapy because this is very important in CF. Her clinical data: 3 positive sweat test conductivity measurements, underweight, constant airway-infections, gastro-intestinal infections, problems of digestion, extreme transpiration, curved nails, increased bile acids, thorax x-ray minimal suspicious, genetic testing negative, complete gene test exon 13 D727Y, bronchitis, several times scarlet fever, problems with the kidneys, 1.11 cm and 15.1 kg, age 6. She has been tested on: celiac disease, food intolerance, allergies, anorexia, dermatitis, dysfunction, dysplasias, dehydration, deprivation, cholestase-fucosidose,g luose 6 phosphat dehydrogenase, glykogenose typ1, hypogammaglobulinaemia, klinefelter syndrome, long-term-pge1 infusion, mauriac syndrome, mucopolysaccharidose type 1, protein deficiency nutrition, pseudohypoaldosteronism, short stature. diabetes, nephrose, adrenal gland insufficiency, hypothyreosis. All these investigations have been negative.
16.09.2010
Enterobacter cloacae
Hello, I have a 19-month-old daughter with CF. Last week we noticed an infection with her, and a throat swab that was subsequently done at the CF clinic showed that she had enterobacter cloacae. The doctor at the clinic does not want to treat this germ any further. He says it has not been proven that this germ will cause any problems in CF patients, but one should keep in mind in later antibiotics therapies that she has (or had) this germ. Is it really true that one should not do anything against this germ? Will it not spread if it is not treated? Many thanks. Anna
14.09.2010
Tap water
Hello, In one of the questions [please refer to “Calcium in connection with antibiotics”] the expert recommends taking certain antibiotics with tap water. This confused me a bit because I actually have avoided tap water up to now. Can I really drink tap water without hesitation? This way I would get in contact with non-boiled water and this would mean, in reverse, that I do not have to boil the water for the nasal wash (nasal douche) before using it either – I mean the oral mucosa and the nose are pretty close to each other, right? What is the official meaning?
14.09.2010
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