Topics

Clothing
My active son with CF sweats a lot. At present he is 1,5 years old. I doubt how I should clothe him. Should he always wear an undershirt or can I leave this out when it is warm? I don’t want him to get a cold but I also don’t want him to be too warm or too cold. How do you catch a cold?
30.08.2011
Uncertainty about intake of pancreatic enzymes
In Holland we seem to have some uncertainty about the intake of pancreatic enzymes. One doctors says ½ hour before the meal, the other says 10 minutes and then another one says just directly before you eat. Maybe it differs from person to person, and how do you know when you should take it? What are signals to take it early or later? Has any testing been done? Could you please answer us? Best regards, J.
30.08.2011
Indoor private pool
Hello, we consider the purchase of a house with a covered private pool, but I worry that this may not be ideal for our son who has CF. Can we trust regular pool maintenance? What should we do extra? Can we specifically avoid Pseudomonas? Or should we just not buy this house? Thanks for your reply!
30.08.2011
gluten allergy and lack of symptoms
Hello In the tests ImuPro 300 assessing latent allergy type III allergy to gluten and milk was detected in my 9-year-old son. So far he hasn't had any symptoms. Does it make any sense to introduce the diet? (I introduced the diet 3 weeks ago, but since a week he has diarrhoea, which was not present before).
30.08.2011
RAISED SGPT
can i use ursodeoxycholic acid because my SGPT is 73 with out any liver disease, & viral markers is also negative, kindly advice me suitable for i am doing my SGPT is normal.
30.08.2011
Humid sulfur rooms - treatment of pseudomonas or other bacterias
First of all I would like to tell that I have son with CF, 2 y.o. He had pseudomonas 1 year ago, treated succesfully but now he has pseudomonas again. Waiting for 2nd phase of treatment in the hospital. I want to tell another thing:I visited in Sicilia, Italia, Terme di Sciacca. I spoke to the doctor about my son´s diagnosis and he recomended me visit with him small room with sulfur humedad which comes directly from the ground. He will sit in the small room and breathing this sulfur directly from the space of room (small drops of sulfur water, like from PARI BOY equipment). I would like to ask if there is somebody who has the same experience. And what does the doctors say about it? Thank you
30.08.2011
Mutation V470M homozygous
Dear expert team, My 5-month-old niece was diagnosed with the V470M homozygous mutation. Polymorphism: In3: c.274-179G>A (rs1429566)- homozygous In9: c.1210-13G>T (RS10229820)- heterozygous I have not been able to find any hits on the internet; I assume it is a rare mutation, since our treating professor in Turkey could not give us any more detailed information on this mutation. Our little one weighs 4890g, her pancreatic elastase value is >500 µg/g, she is currently not taking pancreatin. She inhales salbutamol 2.5mg 4x1/2 and budesonide 0.5mg/ml 2x1 daily. I would be grateful for any information/literature concerning this mutation. Regards.
30.08.2011
False positive sweat test
My son has had four suspicious sweat tests (last 96). The simple gene test was negative. He has to go to a specialist clinic now to have another gene test done. My question: how is he to have cystic fibrosis after all? Here still some information and answers.... My son is 12 years old. He has been investigated about 4 years ago due to his height. In the frame of these investigations, a sweat test had been perfomed automatically. As this test had been positive, again 2 or 3 tests have been performed later. All these have been highly positive. Then a genetic test had been performed with the 30 most frequent mutations and the test was negative. We have then been told by the chief physician that everything would be o.k. and we would not have to undertake anything. So, because he was badly off lately and he had to go to hospital more frequently (due to strong abdominal pain and diarrhea) another sweat test had been performed, which had, as described before, the result of 96. Now he should be investigated in Bochum, Germany. What speaks for this disease is: he is very small (12 years old, 135 cm high and 28.5 kg), permanent diarrhea (since his early childhood), probably his exercise-induced asthma and he has a fructose-intolerance for some weeks. Many thanks Yours sincerely,
30.08.2011
Separation in school, positive and negative, two pupils
Dear expert team, my daughter will probably have to leave her current school shortly, since she is negative and another girl is positive and both are on the same floor and in the same morning care group and also share the same playground. Due to renovation measures, the school is unable to meet the needs of both children. The shool was informed by the CF clinic that mz daughter could also contract a disease while using public transport. I am very despaired since I am scared that my daughter could catch a disease and I could catch it from her. Which strict measures have to be taken in order to separate the children as best as possible? Thank you and kind regards.
30.08.2011
Burkholderia gladioli
Dear expert team, after a 15-day imipenem therapy against Burkholderia gladioli, the first germ test was negative; now a few weeks later, however, an infection is traceable again. How would you proceed? Symptomatically, there is pain during breathing, which had ceased immediately after therapy and only returned at the same time as the germs reappeared. Other than that, no limitations. Will the germ stay if it is not treated? What is the prognosis for this germ regarding lung function, and how can it be that imipenem appeared as sensitive again in the microbial sensitivity test? Is a two-week therapy with this drug not sufficient? The dosage was 1 gram of Zienam® per 300 ml NaCl. Many thanks for your answer!
30.08.2011
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