Topics

Pancreas 2
Dear Dr. d'Alquen, my daughter has the mutation R1048G and R1162G; in our CF center, as well as in your forum we have been told, that that kind of mutation probably speaks for a mild course, whereby one has never a guarantee. In the last winter my daughter had finally 7 infections of the lung, better said bronchitis, but she never had a colonization with Pseudomonas. In most cases the influenza virus had been detected, as well as other bacteria in the upper airways. At the routine check in may we have been told by the CF-center, that one has to find out, why she has had so many infections. Therefore we have had a stay in hospital in june for some days, the aerosol-therapy had been shown to us (two times a day beclomethasone and salbutamole with saline) and she takes since may every second day 250mg Azithromycin. In September we had another check and we have been advised to go on with the therapy that my girl will be well-off. To our question, if the dosage is not a bit too high, they said that this would be better than again having infections. Unfortunately the doctors do not know how it will go on, and my concern, that now also the pancreas could be involved, is present. In any case we will tell them about our observations in january - we can wait until then, or not? My daughter is doing really well at the moment, nearly no mucus at inhalation and her apetite is according to her age. The only striking thing is a rather soft stool, not to say mild diarrhoe from time to time. Best regards and many thanks
17.01.2010
Pseudomonas
Dear expert team, my daughter has had a positive finding of Pseudmonas at the age of 14 months for the first time, which turned to be negative after 2 weeks of iv-therapy. 4 years later, at the age of 5 and a half years, Pseudmonas has again been in the swab and had been treated with 4 weeks Ciprofloxacin orally as well as 2 times a day inhalation of colistin. The first control swabs with and without antibiotic treatment were negative, 5 weeks ago unfortunately the result was positive again. Now she is told to take Ciprofloxacin and Colistin for 3 months. Unfortunately the last swab was positive in spite of the antibiotic treatment and I want to know, if one should change the therapy now and which alternatives there are for the current therapy?
17.01.2010
Coughing due to inhalation?
Hello, our son is 2 years old now. In August, CF has been diagnosed. Since september we inhale regularly. Even after the first inhalation he started coughing at night. Since then he coughs several times a day really hard. He gets N-acetyl-cysteine regularly and since one week also antibiotics. That has not changed anything however. Before the antibiotic therapy a swab had been done, this was negative for Pseudmonas. Is there the possibility that he does not tolerate the inhalation (only with saline) ? Does something like this exist? Or do you have an advice what can be done here! Thank you very much,
17.01.2010
Pseudomonas / home IV for a child (nearly 5 years) yes or no?
Hello, our dauhter is going to get her first IV because of Pseudmonas. We have inhaled antibiotics until now for about 2 months and took antibiotic suspension. Unfortunately the germ is still present in a moderate number. Now our doctor proposed and IV. We would be interested in the advantages / disadvantages and if it makes sense according to your opinion to support a home IV. Regards,
17.01.2010
coughing up blood
is it serious to be coughing up blood in cystic fibrosis
14.01.2010
Pancreas
My daughter’s CF was clearly diagnosed by genetic testing, however her case seems to be a borderline case. Should I point out these new circumstances when we go to the next regular check-up in the CF center? In the meantime, her appetite is better again and she complains less frequently about having abdominal pain. Is it possible that the sypmtoms are caused by long-term antibiotic treatment with Zithromax® (azithromycin)? Many thanks.
14.01.2010
Omeprazole
Do you have any information on the use of omperazole in cystic fibrosis? The dietician for our cystic fibrosis patients has queried whether enteric coated omeprazole can be absorbed from the small intestine due to the altered pH of the small intestine, where the pH is often lower than 5 for prolonged periods. I have exhausted all our resources and hope that you may be able to help me. Thank you
11.01.2010
Patient with CF in Albania
I am the Nurse Practitioner at the Cf clinic at the Hospital for Sick Children in Toronto, Canada. I had a very distraught couple come to see me in my clinic last week. They are from Albania - living in Canada. They were visiting family this summer and met a family with a 3 month old baby recently diagnosed with CF. My understanding is that they were told that there was not much they could do for the baby and her physician put her on Nutramagen. She is still at her birth weight at age 3 months. She is terribly malnourished and needs treatment. I have seen the genetics and this baby is homozygous for DF508 so the diagnosisi is real. The Canadian couple want to know where this baby can be treated. I was hoping that someone could help me with some suggestions as to where they can go close to Albania. I do not think that there is a CF clinic in Albania. I realize that this is a very poor country with few resources to even feed their population. This couple is mailing them the formula, but it sounds like they really need some enzymes and vitamins for now. Do you have any suggestions for me to pass on to the family here? They want to bring the baby to Canada - but I think they should try to get help closer to home. Looking forward to your answer. Thank you Louise Taylor RN, MN, NP-P Division of Respiratory Medicine Hospital for Sick Children Toronto Ontario CANADA
06.01.2010
prenatal testing
When I was a pregnant mother of a 2-year-old CF child I underwent in Warsaw in a year 2000 prenatal testing, which revealed the presence of delF508 mutation (it was a sample of trophoblast) in one of the allels - carrier state. After birth the child underwent screening tests toward CF - the result is normal, the chloride level in the sweat is also normal. Regardig the fact, that genetical testing was done in my child before birth, should I perform also genetical tests from blood sample after birth to make sure?
05.01.2010
of fat-soluble vitamins
We are from Bulgaria. Much like we and our language should be added to your list. My question is: Imer levels of fat soluble vitamins it is free for patients with CF? I ask because even here in Bulgaria we have a laboratory to carry out this operation.
05.01.2010
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