Topics

Gallstones with cystic fibrosis
Are they common? What do I have to keep in mind, since I am also currently breastfeeding my baby?
18.05.2012
Inhaler
Dear expert team, We currently use an ordinary inhaler (2 ml, nebulizing time ca. 10-15 min), but our CF clinic now recommended a new one (2 ml, nebulizing time ca. 2 min). My daughter is one-and-a-half years old and my physiotherapist advised me against using the new device, since a toddler would have to sit upright while using it in order for anything to reach the lungs at all! She also said the device was not suited for toddlers anyway. I am completely confused now and would like to get a third opinion from you! Should we keep using our old device with the longer inhalation time (the little one is cooperating very well), or should we switch after all? Many thanks for your answer.
18.05.2012
Mutation classification
There is hardly any information on the 2184delA mutation other than that it mainly occurs in Ukraine. Which class does it belong to, and what is the difference to the similar-sounding 2184insA mutation?
15.05.2012
Pets and cleaning
Dear expert team, my daughter (10 years old, CF, staph. aureus) would like to have a pet with all of her heart. Because we, the parents, also both have allergies, we have been living without a pet so far, but we would now like to gift our daughter two dwarf rabbits. We are planning on keeping them outside only, though. Our daughter's allergy test is still negative. To what extent can we involve our daughter in taking responsibility for the pets without any risk? And is it a hygiene problem to clean the food bowls and drinking bottles in the dishwasher daily (70° C)? Many thanks for your answer.
15.05.2012
Bathroom refurbishment
Hello, Our new landlord would like to completely refurbish our bathroom (built in 1970). He wants to put in new tiles, take out the bathtub and build in a wider shower. Since our son is already chronically colonized with PSA, we are worried 1) that even with protective foil on the door, aspergillus, mould spores or the like will remain in the air for some time; and 2) that due to the work on the water pipes (breaking them off or putting in new ones), the PSA biofilm will be “broken open” and the risk of infection with new PSA strains will become very high. Would it be sufficient if our son would go on vaccation without us for one week so that we can clean daily and flush the water pipes thoroughly? Would it be possible to object to this refurbishment (which is done only for cosmetic reasons), pointing to the CF? Many thanks for your advice.
15.05.2012
Insulin from when onwards?
Hello, A glucose test showed that my glucose level is elevated, although only minimally at 220 and after meals, and only so little that I will inject 1-2 units. Does this now mean I have diabetes, or not yet? My doctor could not provide any specific information. Many thanks for your answer.
15.05.2012
Motilium® 10 mg tablets
Dear expert team, I (40 years old) have adult CF an suffer from reflux esophagitis as well as small axial hiatal hernia, according to the latest gastrointestinal exam. I have been taking proton pump inhibitors for years (esomeprazole; Pantozol®/pantoprazole; agopton 30mg; earlier also Nexium-mups®/esomeprazole magnesium trihydrate, not prescribed anymore). Despite taking these drugs, I currently have strong reflux of food and constant eructation. My general practitioner would additionally like to try 3x1 Motilium®/domperidone tablets. Can these two drugs be taken at the same time? What else could I do? Kind regards.
15.05.2012
R117P
Can you give me more info on the mutation of my son: R117P THANK YOU
15.05.2012
cf
Hi, I would like to ask you regarding my daughter with mix form of cystic fibrosis. Is it possible that they will have healthy children? Thank you for your response.
15.05.2012
Mutation n1303k
My 3-year-old daughter has no germs, health condition well, drugs inhalation 6% NaCl with 5 drops Sultanol® (Salbutamol), UDC®250 (Ursodeoxycholic acid) 2x1 capsule, Kreon® (Pancreatin), Vigantoletten® (Cholecalciferol). Physiotherapy regularly. I would like to know if there is hope in future to treat this mutation, e.g. ataluren would that be relevant for us? Thank you for answering. [The original question was also asked in telegraphic style.]
15.05.2012
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