Topics

Discuss the disease with a child
Hello. Our CF daughter will be 2 ½ years. We wonder how to discuss the disease with her, especially the CF chronicity and the long-term treatments. Is there a “standard” or recommended approach? Should we be proactive or wait for her questions? Our daughter is particularly clever and able to understand complex concepts for her age. But precisely we would like to avoid going too far in our explanations. Indeed, she’s already very anxious and we know that the unvoiced remarks lead as many problems as "over-voiced" remarks. Of course, at present, in her mind, an illness is a cold, fever, etc ... Should we draw a parallel between these benign diseases and CF or, otherwise, immediately put CF on another level? For example, we are already trying to avoid saying that drugs cure but we say that they treat. We hope you could give us some answers based on your experience. We will try to discuss with the psychologist of our CF Centre but it’s far from our home so the conditions are not ideal. Thank you in advance, Best regards.
14.07.2011
tobi
hello I have CF and am 28 years of age over the last two years my FEV1 has declined from 68 to 48 % predicted because I worked in an environment with heavy smoking, this is irritating my lungs and I did 6 hours physiotherapy per day, I receive one course of iv antibiotics per year and sometimes I also take oral ciprofloxacine now after the iv course my FEV is 58 % predicted, but I have problems to organize my physiotherapy and my inhalations, now I have received a new treatment but my lungs are more inflammatory than infected, in my blood test I have a CRP of 15 and I have received inhaled fluticasone and TOBI, I have already taken it 3 times but I feel unwell taking it, I have the impression that 5 ml is too much and feel like drowning, on top of it I should do pulmozyme (DNAse), mucoclear (hypertonic saline) and ventolin (salbutamol), since I started the TOBI I feel nauseated, have headaches, my nose is running and my sputum is changing colour from green it turns to brownish, I do not think this is normal and want to take back my colomycin, what do you think ? Will the side effects go away or should I stop (this new treatment) ? should I return to taking colimycin 4 mls ? I don't know what to do excuse my errors/mispellings thank you
14.07.2011
hygiene of dish-washer
I just read in a french medical newspaper that dishwashers are contaminated (60%) by fungi with black pigment called Exophalia dermatitidis and E. phaeomuriformis. This species are very resistant to heat and detergents. These fungi would pose a problem in patients with cystic fibrosis. What should we think and how should we disinfect our dishwasher?
12.07.2011
Good news about the combination VX-770 & VX-809
Hello, I noticed news about the VX-770 and VX-809 combination for patient with F508del mutation (deltaF508). Unfortunately I am not very strong in English and the automatic translators are not always clear. Here are the sites where I could see the information: http://newsblaze.com/story/2011060904034600002.bw/topstory.html http://www.canada.com/health/Interim+Phase+Data+Showed+Combination+Improved+Function+Defective+Protein+that/4917737/story.html I understand that the news were good Could you enlighten us on this? Thank you A mother
12.07.2011
Composition and effects of Creon (Pancreatine)
Does Creon (Pancreatine) only help the digestion of fat or also when the pancreas does not produce enough enzymes to digest proteins (azotorrhea)? I clarify the question: if you can explain us how it runs, according to the pH level and what about the possible interest of adding some vegetal enzymes like papain or bromelain. Thank you
12.07.2011
urolithiasis
Does Cystic fibrosis predispose to the urolithiasis occurrence ? Do patients with cystic fibrosis present urolithiasis more frequently than another people? If yes, what is the explanation?
12.07.2011
Vitamin K
Hello I am looking for a solution to help my daughter and facilitate the intake of vitamin K1. A capsule form would be ideal but I can not find a lab that does it. Can you help me? Thank you
07.07.2011
Stay in holiday resort
What are all the precautions to be taken during the boat ride and during the stay? We are planning a trip to Corsica in a holiday resort with our little girl of 3 years Thank you.
07.07.2011
AEROSOLS
When a CF patient is treated with nebulized salbutamol (Ventoline) and RhDNase (Pulmozyme), what is the preferred order and delay to observe between these aerosols ?
07.07.2011
Cystic Fibrosis : interest of probiotics, prebiotics
What are the dietetic approaches about probiotics & prebiotics in cystic fibrosis (for baby, child, teenager, adult), given that there are different types depending on whether the patient can chew or not, eat more vegetables, or meat, is on antibiotics etc ... ? We heard about the use of probiotics for diarrhea, and especially after antibiotics courses that kill both the bad bacteria and the good ones By digging the topic, we see the importance of a healthy intestinal flora for the immune system, in the digestion and assimilation of nutrients, production of some vitamins and help for digestion. What advice can you give?
05.07.2011
<<  < 227 | 228 | 229 | 230 | 231 | 232 | 233 | 234 | 235 | 236 | 237 | 238 | 239  ...  341 >  >>