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Pseudomonas, part 1 & 2

Question
My daughter is four years old and has CF with the n1303k mutation. Despite her bad condition, the diagnosis was made only a year ago. We are at a CF clinic. Two weeks ago we went for a check-up and were told that if a swab showed a germ, I would be notified. I used to call myself, but the nurse was unfriendly on the phone and told me I should not get in touch and that they would call if anything comes up. This time I did not call myself and nobody called me. By chance, because my daughter was unwell on the weekend, I called to ask what to do and also about the swab. The answer, which I did not know about before, was that my daughter has pseudomonas. She was prescribed Ciprobay®(Ciprofloxacin) 5% juice twice a day and Tobi®(Tobramycin) 300 mg twice a day for inhalation.

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[Editor’s note: another question, “Pseudomonas 2,” was asked shortly afterwards. We are including the text of that question below for reasons of clarity.]

My question was: concerning pseudomonas, how can we get rid of it and what do we have to reckon with in case we can not get rid of it? I am looking for a CF clinic and would like to know which one you could recommend. Thanks for your help.
Answer
Hello,

You are saying that your four-year-old daughter was diagnosed with CF only about a year ago and that a check-up about two weeks ago showed pseudomonas. You are disappointed that the team at your CF clinic did not inform you of this even though they told you they would call you to let you know all important results. Furthermore, you are saying that your daughter is now getting Ciprobay® orally and inhaling with Tobi® 300. In your second question, you are asking whether pseudomonas can be eliminated with the current state of therapy and what you would have to reckon with in case elimination is not successful. Furthermore, you are asking about good CF clinics.

First of all, of course, it is understandable that you are disappointed because the CF clinic did not, as promised, inform you that pseudomonas was found. Such a slip-up should actually not happen. However, it does happen every once in a while even in so-called good CF clinics, often during the vaccation months when the clinic might not be fully staffed. Fortunately, you learned about the result quickly and a so-called eradication therapy combining Ciprobay® and Tobi® was started right away. This combination therapy reflects the international standard. If your child did not test positive for pseudomonas before, there is a very good chance that the germ can be eliminated. In case this approach will not be successful, the CF doctors will suggest another, more intensive form of therapy in order for the germ to disappear. Hence there is very good reason to hope that the germ will go away. You should therefore not yet worry about what will happen if it does not go away. This issue should be tackled if and when becomes necessary.

You are asking about good CF clinics because you probably do not trust your current clinic anymore given your recent experience. I think that due to this mishap, your chances to make an arrangement with your CF doctors that will allow you to ask about the test results shortly after the respective check-up appointments are actually quite good. I am sure the doctors feel very bad themselves about this omission. This can be the beginning of a very careful support in the future. [Translator’s note: information on how to find other CF clinics relevant only to German patients was omitted in the translation.]

If you would still like to switch clinics, you should always keep in mind that the new clinic should be easy to reach for you at all times. Too long distances can have negative effects on consistent care at close intervals.

We wish you a successful elimination of your daughter’s pseudomonas and that you will find a way to receive trustful care for your child.

Kind regards,
Dr. H.-G. Posselt
16.08.2012