Topics

CF and celiac disease
Dear expert team, is there a correlation between CF and celiac disease? Would it be possible, that the bowel is damaged in an undiagnosed CF in that way, that it gets extremely hypersensitive and shows similar symptoms as celiac disease? My hope is still that in well adapted creon dosages the diagnose of celiac disease becomes invalid someday. Thanks for your efforts!
29.11.2010
Amiloride therapy
Hello, my 14-year-old son has Burkholderia Cepacia for about 2 years. After the iv-therapy in March 2010 as well as in June 2010 were not successful, one has the hope now to get rid of the germ with an amiloride inhalation quasi as an "intensifier" in parallel to the TOBI inhalation and the intake of Ciprofloxacin 750 mg 2 times a day and cephalexin 1000 two pieces, two times a day. In your question Archive there is up to now nothing about amiloride. I would like to be informed about potential side effects and to be encouraged with success, as I do not feel comfortable with such amounts of drugs. (DNAse is part of his daily life anyway). The therapy should last at least half a year and run with the cycle of 20 days-1 week pause - 20days - 1 week pause... Many thanks for your answer.
29.11.2010
Side effects of vancomycin
Dear expert team, at my last visit at the CF-center, MRSA has unfortunately been detected in my sputum. We decided to start an eradication trial with linezolid orally and in parallel vancomycin i.v. At the first dosage of vancomycin (Perfusor syringe pump was running with 50ml/h) the skin of my head started to itch about 20 minutes after starting, to get red and to burn, which spreaded in the end to the back and neck. My doctor stopped the infusion and gave me cortisone and clemastin i.v., whereon the symptoms subsided after a few minutes. According to my doctor, I have an allergy against vancomycin, so that the treatment with it was discontinued completely and instead tobramycin was given. I have occupied myself a bit with the side effects of vancomycin and have come across the Red-man-syndrome, which symptoms would fit here, too. It is said to be independent of anaphylaxia and should subside on its own with a reduced infusion speed resp. after several courses and after termination of the infusion. As the choice of antibiotics is anyway very limited because of the MRSA, I find it difficult to abandone for all times another drug because of a bit itching of the skin of the head which probably would disappear of its own. I am aware of course, that you can not estimate from the distance if it would make sense in spite of the known risk to give the drug another time and that the decision has fianlly to be made by my treating physician. Nevertheless, I would be interested in furhter medical opinions about the symptoms that occured to me and in informations about the Red-man-syndrome in contrast to an allergic reaction. Furthermore, if and in how far a termination of the therapy in case of such reactions represent indeed the suitable and only measure or if in general not also for example a reduced speed of the infusion for testing purposes would make sense. Many thanks for your help in advance. Yours sincerely,
29.11.2010
X-ray or MRI
Dear expert team, in my CF-center, once a year an x-ray of the lung is done routinely. Does this is at present still the standard procedure or would an MRI not be better, as with this for example the bronchiectasis could be diagnosed better resp. MRI is overall more conclusive? Also with regard to the radiation, I would prefer an MRI, as there is no exposure to x-ray radiation with that for me. What is your opinion? Many thanks in advance for your answer.
23.11.2010
Spreading of viruses
Dear expert team, it is the time of colds again and it also got me right. In the waiting room of my general practitioner I observed that nearly all patients coughed in their hands and touched the doorhandle afterwards. Now I ask myself, if it is known, how long the viruses survive on smooth surfaces (doorhandles or banisters)? Do I really take the viruses in my hand when using the doorhandle? I try to stick to "no handshake", would however wish that many more persons would cough in the crook of the arm. Many thanks for you efforts. Yours sincerely,
23.11.2010
CF worse in the winter?
Dear expert team, My son has a severe cough (including bringing up mucus) which starts in September and lasts until the end of April. From May until August, he does have a cough as well, but not as severe. He also has chronic polypoid pansinusitis, which we are able to manage quite well with cortisone-containing nasal spray during the summer months but which unfortunately keeps returning. We have been having these phases since he is two years old. I can practically set my watch by them. My question now: are there cases in which this disease is worse in the winter? Many thanks.
23.11.2010
Complementary inhalation of bicarbonate and thiocyanate in addition to the normal inhalation with Sodium Chloride
Dear ladies and gentlemen, our little son is 18 months old and has been diagnosed as a CF child 6 weeks ago. Of course, we as parents are constantly reflecting how we could further develop or improve the therapy of our child. As an employee of a university I have online-access on many scientific medical data pools and journals. I have to admit, that I am looking to these very often.... Many a time I have read that the CFTR gates in addition to chloride ions also bicarbonate and thiocyanate (and lately: hyaluronic acid). The effects of this on a defective CFTR are discussed. So, the absence of bicarbonate is expected to impede the folding of the mucines in the lung as well as the absence of thiocyanate is expected to weaken the immune-system of the lung, as hypothiocyanate as a "mild" oxidant is not produced anymore. I ask myself for quite a time, why the daily inhalation with iso- or hypertonic saline is not completed with these salts, in order to achieve a therapeutic effect? Finally the normal saline inhalation is not more than "only" the complementation of something that is missing. The GSH-inhalation would for me also aim in the direction of this approach... Are there any attempts in this direction respectively are there any planned? I would be very thankful for an answer. Yours sincerely,
22.11.2010
RhDNase
Side effects of Pulmozyme : is there another drug to replace it ?
22.11.2010
Aerosol
Dear madam, sir, Our 13 months old daughter suffers from CF. Luckily she has little airway complaints and only uses vitamins and creon pancreatic enzyme replacement therapy. Our doctor wants us to start using nebulizer. She does not complain of shortness of breath, nor anything that points towards it. The doctor advises us to use an aerosol with salt water, not antibiotics and states it is more preventive. No I am asking if she is not too young to start therapy with a nebulizer because she doesn’t have any airway disease, nor secretions. And secondly I am worried about the effect of the nebulisation. Isn’t it so that the use of salt solutions increases the sodium chloride content on the mucosal surface and inhibits the natural immune system (defensines). Thank you for your reaction.
22.11.2010
dele 2,3 / e822X
dele 2,3 / e822X
22.11.2010
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