cystic fibrosis - problems with medical care

Question

Hello,
We have a 5-year-old daughter suffering from CF. Our child is in the care of only one doctor, who is taking care of all CF patients in our province. In the past two weeks we tried to contact our doctor, but unfortunately her mobile phone is switched off. Our daughter underwent antibiotic therapy, but unfortunately since that time she has a dry persistent cough that often leads to vomiting. We called the doctor's office trying to make an appointment and we insisted on admitting our daughter. Finally we got the referral to perform pharyngeal swab. The results revealed the presence of single Pseudomonas aeruginosa colonies and Staphylococcus MSSA. Pseudomonas is sensitive to colistin and Staphylococcus to methicillin. After receiving these results we tried to contact our doctor again, but her mobile phone is still switched off and it is not possible to make an appointment in the doctor's office. We don't know what to do. We are all alone and have no doctor's care and our daughter is sick. She suffers also from abdominal pain and steatorrhea, which she doesn'c control. We are asking fro help, because we don't know to do.

Answer

Dear Questioner,
We share your care and anxiety. In this situation we advise you to contact one of the reference CF centers, which is localized nearest your place of living, for example in Silesia region to prof. Halina Woś, Dept. of Pediatrics, Silesia Medical University, 16 Medyków str., 40-752 Katowice (phone: 032 207 19 50), in central Poland to dr Dorota Sands, Center of CF Diagnostics and Treatment, Dept. of Pediatrics, Mother and Child Institute, 17a Kasprzaka str., 01-211 Warszawa (phone 022 632 80 09), and in north-west Poland to prof. Wojciech Cichy and prof. Jarosław Walkowiak, Dept. of Pediatric Gastroenterology and Metabolic Diseases, Poznań University of Medical Sciences, 27/33 Szpitalna str., 60-572 Poznań, (phone 061 847 26 85). In these centers you will find multispecialistic help, including pulmonological and gastroenterological, which in our opinion is the most required in your daughter currently.

Best regards,
Dr. Kobleska-Dubiel

20.01.2009