Topics

Ferritin
Hello, I (female, 39 years old, CF, chronic Pseudomonas) suffered for a longer time from iron deficiency (ferritin below 10) with partly anemia. As the physical symptoms (exhaustion after minimal efforts, fatigue, pain in the neck) got worse and worse, I decided together with my general practitioner, to do an infusion with ferrlecit®. The above mentioned symptoms improved markedly. However I realized unfortunately after the infusions, that my secretions and the cough increased. After 4 of 6 infusions I stopped finally the infusions due to the worsening of the pulmonary situation. Now my question: what role does iron play for the metabolism of Pseudomonas? And is there an "optimal" value for ferritin in CF? Respectively could higher ferritin values (e.g. over 50) be a problem for the lung in CF? Many thanks for your efforts.
16.01.2017
Genotype F508del/174del A/K14X
Hello, we just got the diagnose of CF in my 2-year-old son, just a few days ago with the above mentioned mutations. What does the mutation really mean? Is that a mild or a severe mutation? Is it rare? Unfortunately I cannot find anything online. Many thanks in advance.
16.01.2017
Rigid chest
Why does the rib cage becomes rigid with the years when one has cystic fibrosis?
16.01.2017
Rigid thoracic cage
Hello My 14-year-old son has a large chest distension and a very hard rib cage very hard, so that drainage is difficult. He breathes only on its volumes of comfort, difference between inspiration and expiration is only 4cm, he has hypersalty serum, the strap, flutter + balloon exercises. Is it possible to do something else? Thank you for your reply
16.01.2017
S. aureus small colony variants
We just received the sputum culture of our 7yr old daughter, which showed the presence of S. aureus and S. aureus small colony variants. What is the meaning of small colony variants? Should we treat these colonies? Is it a classical evolution of S. aureus?
02.01.2017
Pseudomonas in gingival sulci
Hello, in the answer from Dr. Mainz about the sinu-nasal inhalation I read about the possibility of the persistance of Pseudomonas in gingival sulci. I have indeed a bad dental status and also some dental crowns made of synthetic material. Now I would like to adress this topic urgently, in order to get rid of those possible sources for Pseudomonas. Do you have any recommendations how to clean up the oral cavity in this case? I have talked with my dentist about this. He proposed to have a dental cleaning and a cleaning of the dental sulci done with ultrasound and after this to put 2% chlorhexidin gel in the gingival sulci for a short time. He would take out the dental crowns made of synthetic material and have them cleaned in an ultrasound bath. What do you think about this? Would an ultrasound device and an ultrasound bath kill possible Pseudomonas bacteria? My research in the internet revealed that ultrasound does not harm Pseudomonas. How could one otherwise clean up the gingival sulci? Is 2% chlorhexidin gel a sufficient anti-bacterial substance against Pseudomonas or can you recommend something else? Are there any substances, that kill PA, that could directly be used or that could be used to rinse the ginigval sulci? And how can one avoid another transmission during the treatment at the dentist? I would be very pleased about advice!
16.12.2016
CF without involvement of the lungs?
Dear ladies and gentlemen, my question is a bit strange, but it is preying on my mind. I am 29 years old, and I have problems with my digestion for about 12 years. Again and again constipation and diarrhea, flatulences and problems in digesting my food. All investigations were without success. 2013 my gallbladder had been removed, due to stones. After that it turned to be even worse with eating. A CT revealed that my bile was too viscous. For about half a year, I take pancreatic enzymes on my own. I came along this via my own research. What can I say, I tolerate my food now 90% better than before, the pain improved and also the digestion is a bit better. Now I have read that Cystic Fibrosis could be the reason for such symptoms, however am I not too old for this? Do I have to worry? Do you have advice for me? Best regards,
05.12.2016
Under which circumstances is Pseudomonas turning to be mucoid?
Hello, my daughter, CF, 8 years old, has had in February 2015 for the first time Pseudomonas aeruginosa. Two cycles of tobramycin per inhalation followed, in the third cycle in combination with ciprofloxacin, after 3-6months PA could be again and again found. Then three i.v. therapies followed (1. tobramycin and ceftazidim, 2. tobramycin and meropenem, 3. tobramycin and piperacillin) and permanent inhalation of colistin, for 9 months every 4 weeks in change with tobramycin. For one year, the antibodies had always been positive. They have fortunately turned to be negative again. As the PA have anew been found and another i.v.therapy is planned, I ask myself, which circumstances make the germ turn to be mucoid. Fortunately it deals until now with a non-mucoid PA. Is there any data about this when it is turning to become mucoid? Many thanks for your advice. V.M.
05.12.2016
Nasal influenza vaccination
Hello, I would like to have the influenza vaccination done to my 10-year-old son with CF, like every year. The nasal vaccination has been recommended to me by a pediatric pulmonologist, due to a better efficacy. As my son does not like syringes at all, I would like to know, if the nasal vaccination is also recommended from the CF side, respecitvely what could speak against it. Many thanks! D.
05.12.2016
Swimming
Hello dear expert team, My grandson who is living in France (2.5 years old, CF) is very well followed up in the CF center in Lille and he is doing really find---he thrives very well. He is very active, has three times a week physiotherapy and does not show any lung symptoms. He did not have infections until now. My question: The family wants him to learn swimming. We are living in Bad Pyrmont. We have a thermal swimming poolgg (Hufeland thermes) where also our children learned swimming. The facts: According to the personal the water has 2% salt, is disinfected with 3-6 mg Chloride/l and the temperature is 32°C. Can we take our grandson without worries to that swimming pool? Many thanks for your efforts, P.
05.12.2016
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