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Mycobacterium abscessus
Hi, My daughter is 13 years old, recently she has Mycobaterium absessus and her PFT drop drameticly from 111% to 66% - 62% and now she only have 52%. Does anyone have already experience in this field??? She is on Amukin and Biclar treatment.
24.11.2008
To see the dentist
Dear expert team, our son will be 2 years old in October. Since March we know that he has cystic fibrosis and celiac disease besides. Now we would like to take him to the dentist to introduce him to the doctor and have his teeth inspected for the first time. Are there any risks? Where should we especially see to in connection with visits at the dentist’s? Currently we still feel rather insecure. I would much appreciate your answer and thank you very much in advance.
24.11.2008
Caries and braces in CF
Hello dear experts, Is there a higher caries risk for CF patients which would, e.g., make necessary a special treatment in case of orthodontistic measures? The question is not about the treatment at an orthodontist in general but the point is if special provisions have to be made before getting braces (e.g. a special sealing of the teeth). [with "braces" we mean a fixed "brace", not a retainer that can be removed] Many thanks for your efforts!
24.11.2008
cystic fibrosis
1. Who can disprove fixed cystic fibrosis diagnosis (no CFTR gene mutation; chlorine in sweat: 81 mmol/l, 51 mmol/l, 10 mmol/l, 12 mmol/l, 49 mmol/l)? 2. Does belong invalidity benefit (child has 18 years old) if cystic fibrosis diagnosis is not disclaim? 3. Why prof. Kiauleikienė recommendations for treatment of cystic fibrosis and disability determination are invalid?
24.11.2008
Prolonged cough, phlegm production, weakness and sweating
Good afternoon. Four years ago I started with cough, sputum production. I have been treated for bronchitis. But my condition became worse. A lot of sputum, dyspnea, and perpetual feeling of heat, and sweating. I can not do any work. Now, in summer is worse. Then frowst, I am sitting and sweating, I have no potency. I have been consulted by pulmonologists several times. Chest X-ray has been performed – no pathological changes. I feel dyspnea then go upstairs and there are no force in the legs, difficult to go, quickly get tired and dyspnea. Now I am sitting and feel that difficult to breath. I am afraid, may be I have a serious pulmonary disorder. Something wrong with my breathing, I feel dyspnea. But pulmonologists say that there is no respiratory disease. But I phlegm and they choke me. Something produce them. May be you can advise where I can get complete examination. I am tired, but nobody found disease. Thanks.
24.11.2008
Mustard-oil as acitve agent in Cystic Fibrosis
Hello, I have another question that is important to me. The institute for environmental medicine and hospital sanitation (university hospital Freiburg, Germany) made a study about bacteria (among others Pseudomonas) and a drug with mustard oil as acitve agent with good results ("the trade name was given in the question but replaced by the information on content and active components by the editor for legal reasons"). What do you think about a high-dose administration (according to the producer) of this drug in acute infections in Cystic Fibrosis? And what do you think about a long-term (e.g. during winter time) low-dose administration (2-3 tablets a day) as a prophylaxis in order to counteract against infections with Pseudomonas and the exacerbation connected to it? Could you write me your opinion about this topic? Many thanks!
24.11.2008
Problems in rinsing the port (central i.v.-line)
Hello, I am suffering from CF and have an implantable port-system for infusions of antibiotics for 2 years. At the last two rinsing-procedures of the port (the last even at my CF doctor) I suffered from nausea and strong shortness of breath just after the rinsing-procedure (about 1 minute after). After 5-8 minutes, everything was over and normal. My CF doctor did an auscultation during the shortness of breath period, but could not find anything in listing to the lung (no bronchospasm, pneumothoracs…). On the x-ray done afterwards, showing the port, everything looked pretty fine. The skin around the port is unchanged, too, I do not have any pain or feelings of pressure. My physician does not have an idea at the moment, single suspicion: allergy to heparin. But I am getting it for years together with the i.v.-therapies and until now, there has not been anything. Do you have an idea what the problem is do or do you have heard of anything similar or experienced anything similar? Many thanks for your answer,
24.11.2008
Important question to Cystic Fibrosis
Dear ladies and gentlemen, first of all a short prehistory: our daughter, almost 4, is ill very often (2 pneumonias, 2 x the flu with Influenza B with a stay at the hospital), she has often a dry cough at night which turns to be productive then, often bronchitis and at the children convalescent care they diagnosed a mixed asthma, as she reacted strongly to cat, dog, rye, wheat, sage brush and other grasses and of course the permanent cough at night. She is snoring at night and we should clarify if she has adenoids. She only weighs about 16 kilogramms at a height of 110cm. She is very thin - but very tall for her age. Last week we had a visit at the pulmonolgist and he arranged a sweat test. We had today a second sweat test done. The last test was last week and the result was 55. Today the result was 59 mmol/l. After that we had a talk with the chief physician for pulmonolgy and allergology. After the result of 59 was obvious, we were already in panic that the physician would affirm the diagnosis Cystic Fibrosis. The chief physician said that he excludes Cystic Fibroisis in the case of our daughter because firstly the results should be higher, but both have been under 60. He said that over 80 mmol/l one could be sure. Secondly, he did an x-ray of the lung to our 4-year old daughter and stated that he could not see any changes, and a child, suffering from CF would have changes at the lung x-ray. He even explained the x-ray to me. I mentioned the genetic testing to him; he was of the opinion that if one has any doubts or both results would have been higher, he would advise the complex genetic testing, but he does not see any reason for this here, as other signs are lacking (however, from our point of view some do speak for this). He was of the opinion that children with CF are permantly producing mucus, but our daughter had a free lung and is not permantly producing mucus. Of course we are relieved in some way, but we do not have a 100% statement either, right? I asked if we could have our genes checked, means my husband and me, and in case one of us does not carry the gene, one could exclude it for our daughter, but he was of the opinion that we should not worry about this and this was not necessary as he excludes it due to his investigations. Can we rest assured or are the two times results of 55 and 59 a reason for concern? In case of CF are 2 x higher results expected or at leat one time? The physician mentioned that it could be that one gene was there in our daughter, but it does not come out because she does not have it but it is only inside her. And then such results in the borderline zone could come out. IN addition, blood has been taken from our daughter in order to control the immune system. Sorry that the question has turned out so long, but I wanted to describe everything as detailed as possible to you in order that you could probably help us further, respectively that you can give us a statement if we have to worry or if the physician is right (according to the results and statements). Many thanks in advance,
24.11.2008
Elevation of liver enzymes
Dear expert team, Because of partly increased liver enzymes (AP / GGT) I get the drug ursodeoxycholic acid 400mg. The results for ALAT and ASAT are in the normal range. What does the intake of this drug effect? Do the liver enzymes return to normal range? Should probably a biopsy of the liver be done, like the CF-doctor advised me to do? Thank you
24.11.2008
I.v.-line
Dear expert team, I have had major problems with the i.v.-lines at my last i.v.-therapy; for one thing the classic i.v.-line only lasted for 2 days and perturbed me very much; for another thing the tapping with the needle was several times unsuccessful. .. In gerenal my venes are very good and therefore I would not like to have a port for the moment. The alternative would be a half-central i.v.-line, which I already had on the island of Amrum...unfortunately my CF-outpatient clinic does not have any experience with that!! I hope that you could tell me some more about that in order I can pass the information on. Many thanks,
20.11.2008
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