Topics

Going to kindergarten or school with MRSA?
Hello, My son (CF) is 25 months old now and has been MRSA positive again and again since he was 3 months old. There have been several eradication attempts, various iv therapies, antibiotics inhalation, and continuous oral therapy with co-trimoxazole. He is then negative for a few months and suddenly positive again. All relatives have been tested, and all are negative. There are no pets. Our house was also tested – negative. We are absolutely at our wit's end. Next year, kindergarten is coming up and I would love to send my son there. We would also badly need the money if I could work more then. He would be going to a regular kindergarten, not to an integrative one. I do not think that is necessary. What about MRSA? Could it be that I will have to isolate my child forever? We are currently attending a playgroup and a music group. Would I have to indicate it there? Do I have to indicate it at kindergarten at all? What if I don't? I just don't know what to do anymore.
15.01.2013
Cystic fibrosis?
Dear expert team, My daughter is 8 years old and has the R1162X – R1084G mutation. We received the cystic fibrosis diagnosis when she was still a baby. At that time, we went to a CF clinic. The first years of her life were unsuspicious. The sweat test was negative. We were told she had CF, but that is was a form without symptoms. At the age of three, she had infections repeatedly so that the CF clinic considered therapy options. From then on, she got Zithromax® (azithromycin) every other day and we did breathing therapy twice daily. When she was six years old, we switched to a different CF clinic because we felt that the therapy up to then in no way compared to our daughter’s health status. She did have recurring infections, but we did not understand why we had to give her antibiotics continuously. In the new clinic, again sweat tests were done. The values were between 15, 22 and 43. We were now told here that our daughter did not have CF because the tests were negative. We were advised to refrain from any kind of therapy since she is a healthy child. This is what we did. Unfortunately, she got worse over time. She got short of breath, could not do sports as usual, and had (slight) infections repeatedly. Over the course of five months, two spirometries were done, both of which were significantly below her usual values. We subsequently resumed breathing therapy (saline solution inhalation once daily, flutter, autogeneous drainage). She got significantly better and the spirometry values were excellent again. During our last consultation at the CF clinic, we were again reassured that she does not have CF. My question now is: does the sweat test alone indicate CF, or does a blood test also reveal something? Could it be that she shows CF symptoms despite a negative sweat test? We are confused because we got two completely contradictory statements from CF specialists. Some say she has CF and want to do a complete therapy; others, on the other hand, think she is completely healthy and that it is only necessary to do a sweat test once a year.
15.01.2013
ABPA or APC?
Dear expert team, I am 22 years old and have CF. For some time now, my IgE has repeatedly been elevated (above 500). A RAST sensitivity class 3 to aspergillus is given; the sputum showed candida above all. The remaining values do not point to ABPA. Does this suggest ABPA? Or could it be ACP? I got significantly better (esp. the sputum amount) during treatment with Sempera®/itraconazole, except for my blood sugar (I have CF-related diabetes), which is pretty out of control. This is due to the itraconazole, isn’t it? Would a cortisone therapy make sense then? Are there any alternatives? Kind regards.
15.01.2013
Right heart strain
Dear expert team, My daughter was diagnosed with right heart strain and I would like to ask whether this means her fitness is a bit limited now. Many thanks.
15.01.2013
Cat (outside during the day)
Hello, my son's (CF, 14 years old, colonized with encapsulated PSA, FEV 90%) grandparents would like to "adopt" a stray cat who is very healthy according to the vet. The cat is outside during the day and sleeps in the house. No litter box. Is this a reasonable plan with a CF child and, if so, which hygiene measures are required? Are there any particular vaccinations apart from the usual ones necessary for the cat? Can our child sit in the same chair as the cat? Is a litter box in the house off-limits? What about stroking the cat? Many thanks for your advice.
14.01.2013
pseudomonas
I read one question posted here and it describes the condition of my child to the letter. My child is negative in all pharyngeal tests, except the summer ones, july +, august - (with treatment), with treatment negative tests (july-february), but in july positive. Does that mean permanent pseudomonas and has the lung damage already begun? If I understood correctly, do these children have more frequent colonization as they grow up, although they are more responsible than a 2.5=3 years old child?
14.01.2013
humidifier
I would wet my interior to maintain a proper Hydrometric rate and of course do not use standing water. What do you recommend? a dad
14.01.2013
ESBL – how easily transmittable?
Dear expert team, Many thanks for hinting to the previous questions on ESBL. I already read their answers, but would appreciate it if my question was answered nevertheless. I am particularly interested to know how easily ESBL is transmittable (to our daughter’s grandparents, who are at the great-grandfather’s every day) and whether a test makes sense. Many thanks. [Note: the following question was asked by the same questioner earlier: Dear expert team, Our daughter’s (4 years old, CF) great-grandfather has been diagnosed with ESBL about a year ago. We have stopped being in touch with the great-grandfather since knowing about the germ. Now, however, our daughter’s grandmother visits the great-grandfather in his retirement home daily. I am wondering how likely it is that she as well as her husband (who has COPD) have caught ESBL. Would it make sense for both of them to get tested (if so, how?), especially given that our daughter has CF. I feel uncomfortable with this whole ESBL issue whenever the family is getting together; we have therefore been reducing contact significantly for several weeks. Also, in the retirement home, no whole-body and mouth protection is done anymore with the great-grandfather; instead, one only points to hand disinfection and he can also move around freely in the home. Isn’t that a bit careless?]
14.01.2013
Possibility of carrying 2 mutations
I am pregnant and I was tested for 85% of the greek CF mutations of the CFTR gene. I was found to be a carrier of the Ν1303Κ mutation. Is it possible for me to carry another mutation of the CFTR? Would that mean that I need to do a more complete genetic testing, one that covers a bigger percentage of the mutations?
14.01.2013
Elastase test
I would like to ask about the elastese test. Must the stool sample be of the same morning as the test, or can it be of the night before? Is the test necessary for social security?
14.01.2013
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