Topics

Heredity
My son is going to have a child. He does not have CF, but has a younger brother with CF. How can he find out if he is a carrier?
03.06.2009
Garden pond
Our grand-daughter suffers from CF, which has been diagnosed about one month after her birth. Now she is one year old. We have a garden pond with fish. The parents of the child told us to abolish the pond after having asked the CF doctor in Cottbus, as it should be more dangerous than a wirlpool. Is probably a barrier sufficient in a certain distance? On the neighbouring property there is also a pond, which we can not demand to abolish anyway. How are the recommendations here? [on the 20.04.09 the question has been amended:] I would like to amend my question to the pond: how is the risk in general in the garden? That concerns especially the compost pile and the watering with a) tap water b) collected rain water c) pump water (ground water, about 3m deep). Many thanks for your answer
03.06.2009
Help regarding lung transplant
Hello, I would like to ask about possibilities for CF treatment if one already depends on LTOT (long-term oxygen treatment). My brother-in-law was diagnosed with CF 3 years ago, up till then he had been treated for asthma, which seems very strange to me, because this illness can be easily diagnosed these days. My brother-in-law is now 36. Ha has refused to be treated because of his family, he did not want to admit that his disease and kept avoiding new information even if he went through regular check-ups to Bratislava. His doctor had said at the beginning that the progress would not be as fast. During this year his state has worsened dramatically that he stayed in the hospital and only oxygen therapy for 15 – 22 hours a day can help. I am mainly interested in lung transplant and the risk of this operation – will it be successful and what complications may occur. Thank you very much for your reply.
03.06.2009
damaged liver can be repaired
I have a boy aged 7 years, diagnosed with CF at the age of 2 months .One year ago he was diagnosed with multifocal biliary cirrhosis, I was told that is the consequence of disease. To understand that all those with CF sooner or later will get cirrhosis, diabetes ...? I saw the final stage of cirrhosis is chronic hepatitis, cirrhosis now can lead to liver cancer? For several months appeared in our country NEXAVAR for liver cancer, is useful for cirrhosis? It is true that in patients with cirrhosis after liver transplantation chances of survival is only 1 year? I recently read an article that ill liver may be regenerated (“rebuild”): ... quote the article: The damage caused to the liver due to excessive alcohol consumption or hepatitis can be "fixed", argue researchers from the University of California. Researchers argue that development of “scar" around the body can be stopped by blocking a protein who help their growing. Excessive alcohol consumption and hepatitis lead to a process called fibrosis. This process involves the formation of an excessive collagen tissue around the liver. When this tissue is very abundant cirrhosis occurs. In the present available treatments are not only to stop spreading "damages" and not helping restoring the body. For research have been used guinea pigs with severe liver fibrosis. They were divided into two groups. Some have received drugs that blocked the action of proteins that lead to fibrosis, while others received treatment classic. Those who received drug blocking the protein have been cured of fibrosis and liver was totally rebuilt. Those who received classic treatment only improved clinical condition Researchers said that the treatment can be used to treat pulmonary fibrosis. ........... End quote. You know more about these studies? These drugs have been developed or are just in the stage of research? And I have a question. Recently appeared in a pharmacy ESSENTIAL LIV-100 with protective effect an regenerating: - Remove fat accumulated in the liver -liver cell-activating -regenerated liver cirrhosis Ingredients: conjugated linoleic acid (CLA), L-ornitin cetoglutarat, adenozil S-methionine (SAME), methionine, dried extract of Schizandra chinesis, silimarina, vit. B1, B2, B3, B6, B12, folic acid, alpha-lipoic acid, chromium, selenium. It may be administered to children over 6 years 2 / 1 capsule daily. Treatment should be given for minimum 60 days, 2 times per year. Can I give my son this medicine? Now he is taking: Liv 52 syrup, and Essential, Ursofalk .
28.05.2009
Mutations R1162X/R1048G Wish to have another child
My husband and I have a four-year-old daughter who inherited our mutations and suffers from a mild form of cystic fibrosis. She has lung infections quite often and the experts cannot give us any information about the course of the disease. My husband and I would like to have a second child. The probability that both genes are inherited is 25%. We were told that our potential offspring might have a severe form of cystic fibrosis. Is that true? Isn’t it the case that our daughter already inherited both genes [remark of translator: and although she inherited both genes, she only has a mild form], so actually a heavier form is not possible? I thank you sincerely, I think this platform is very helpful.
26.05.2009
CF excluded but a mutation R117H
Dear ladies and gentlemen, I am 33 years old with CF, my daughter is 7 years old with CF and my son is 14 years old. To him, a CF had been excluded via potential difference/ molecular genetic / sweat test in two different hospitals. But my son ought to be affected by a not-known mutation and he carries the mutation R117H. My son is 154 cm heigh and weighs only 34 kg and he looks like a CF child. He has asthma, reflux, dysthrophy, fructose intolerance, hypothyreosis, IgA deficiency. One time in 2003 Pseudomonas Aeruginosa. My question, a last possibility that comes into question, at a urologist one could have made an investigation but I do not know at what age that could be the case as he does not look like 14 years old and if he is sterile, because then he must after all have CF. The health condition is very critical and here nobody helps my son which I regret very much. Yours sincerely,
26.05.2009
Visit at the out-patient clinic / child puts finger in the mouth
Dear ladies and gentlemen, my daughter, CF, 7 years old (Pseudomonas negative) plays in the childrens waiting room and touches the floor and permanently she has the hands in the face and in the mouth. I do not like this and have talked to her many times, but she says that she could clean her hands with disinfectant but only afterwards. I do not know how to handle this, as especially in the out-patient clinic where there are 5 different clinics germs are present. Yours sincerely and many thanks,
26.05.2009
Hypoglycaemia / weakness
Dear ladies and gentlemen, I got a glucometer for 4 weeks from my CF-doctor as I have a great hunger during the night. The lowest count was 3.9 mml and the highest 8.9 mml. I have visited a diabetes specialist because I have always episodes of faintness and only hardly could stand on my legs and he said with this counts I would not have a diabetes. As my eyes worsened to -7.5 dioptries, I have great fear of getting a diabetes. Does it make sense to go on measuring the blood glucose level, as the diabetes specialist said, it would be a shame about the testing strips. Many thanks,
26.05.2009
Frequency of bowel movements very seldom, since taking Kreon
Dear Dr. Posselt, many thanks for your answer. Our sons bowel movements are since the beginning of taking Kreon nor frequent neither smooth. They had been like this before. Since we started on Kreon, he almost has obstipation, his stool is now due to the Kreon very volumious, stinky and mucous. As said before, he is completely brest fed. I can not give suppositories all the time to my baby that it can have bowel movements?! He is also above the average with his height and weight. In 3 days he is 7 months old, has 68 cm and weighs 8750g. At diagnosis, when he was 6 weeks old, we were told to bring a stool sample and there the enzymes were missing responsible for digestion of fat. Could it be that the pancreas restarted working on its own? And he does not need the Kreon anymore? And why does he not taste salty anymore? Many thanks in advance,
26.05.2009
Separation of positive-negative patients and ice cream shop
Dear ladies and gentlemen, many thanks for the quick answer. I myself suffer from CF and I am negative (Pseudomonas) [this was added from the translator] like my daughter. At the last appointment at the clinic, several patients were positive and I only got this information after one hour from the nurse and I have been very sad that I did not get this information before. At our childrens' outpatient clinic positive and negative patients are also separated, but some nurses have to be told again and again, that they have to disinfect their hands after every patient as you do not know if a patient already carries different germs if a swab has not been taken for the last 6 weeks. I have one question, at the hospital there is an ice cream shop, and it is hard for me to say no to my daughter as the hygiene is not present there. There is a container where all ice cream spoons are stored and no running water and in addition, after rinsing of the spoon it is dapped with a damped cloth and this I find very critical. Is it sufficient if the salesgirl rinses the ice cream spoon with hot water? Many thanks,
26.05.2009
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