Topics

baby gym
Hello, I have a 12-month-old girl with cystic fibrosis. Can I register her on babygym? I know that it is good for the development but I don’t know if I shall wait before meeting her many other infants (especially in winter)? Should she begin later? Thank you.
04.03.2013
Bronchitol®
Hello, I would like to know if Bronchitol® (Mannitol) is finally available in France and if the study for children older than 6 years has given positive results. Thank you
04.03.2013
vaccine against Pseudomonas and Staphyloccocus
Hello, I have heard of vaccine clinical trial phase II and III called IC43 (pseudomonas) and V710 (staphyloccocus). Do you know more?
04.03.2013
IVIG (intravenous immunoglobulins) infusion
At age 25 I had diagnosis of Allergic bronchopulmonary aspergillosis. At 59 my current age I had a diagnosis of CF by a CF doctor. I have a Delta F508 gene and the 5T variant. I also have a Primary Immune deficiency diagnosed by an immunologist. I had no titers to the pneumonia vaccine. In December of 2011 I had a pulmonary embolism. I was put on Warfarin. I am told I will be on Warfarin the rest of my life. I also have neuropathy. I have a follow-up appointment with a Neurologist in December. I went back into the hospital after the sinus surgery because I fell several times. I hurt myself and there was a concern I would hit my head. There was a concern that I had Multiple Myeloma. The Hematologist determined that I had MGus (monoclonal gammopathy of unclear significance). I have had sinus and pulmonary problems all of my life. In the last year I have been in the hospital 11 times for a total of at least 4 or 5 months. In October I had sinus surgery. Burkholderia Cepacia along with 2 additional bacteria was cultured from my sinus and lungs. In the last year I think I have had 11 different bacteria cultured. I have been on intervenes antibiotics for most of the last year. The Immunologist would like to start me on IVIG infusions which would be another thing to be on the rest of my life. I don’t think that antibiotics every 6 to 8 weeks is the way to go for the rest of my life. What are your thoughts on the IVIG infusion?
04.03.2013
Pseudomonas and hygiene
Dear expert team, I know, that similar questions have already been asked several times before, in spite of this, I as a mother of a 15 year-old girl with CF, am again and again insecure when reading the newest recommendations concerning hygiene in daily life. We have again a positive finding of Pseudomonas and I read again about all possible "sources to avoid" according to the guidelines from the 28th june 2012, what I have done so many times before. What is still not clear to me is- what is the benefit of letting the water of the shower run and to quit the bathroom during that time when after that I take the shower gel for rinsing and it can contain Pseudomonas, what has already been attested. I have already read, that the germ can survive also on dry things or surfaces for a certain time (how long?)- what is then the effect of drying the tooth brush- besides I have to use tooth paste- in which the germ has also already been detected. Next example – how can one manage that the sponge for the dishes is always dry- is it effective to dry it in the microwave? So, I am again and again completely insecure and I am of the opinion that out of fear one does things, that are simple – however there are many other situations that one does partly not take into account respectively that one cannot change and that are a thousand times more dangerous. An example would be taking the bus respectively the car in the winter, especially when there is much snow, the carpets in the car respectively the floors in the bus are very wet- then the heating is running all the time and one has a real greenhouse climate. Or also in hospital – of course patients with respectively without germs are separated- but if I have a germ once and one patient after the other has to be in the treating room respectively the lung function and I read, that germs can be detected in the surrounding air up to 3 hours, I can only say that I feel sick—that means if you have once a germ you can only pray that you will not get even more at the appointment for check-up. I know that this sounds really hysterical, but I feel powerless and the more I read, the worse it gets. Excuse the length of my remarks, but I believe most of the parents think like this. Many thanks I.D.
04.03.2013
parachute jump
One of my patients who presents a respiratory failure (FEV1 between 22 and 31%), with hypoxemia and hypercapnia has received for his birthday a parachute jump. He was dreaming about it since a long time. He needs a medical certificate. I think it is not reasonable because of situation fragility to do this kind of exercise. Which attitude do you have? Doctor S Ramel
04.03.2013
Desire to have children
Dear expert team, My husband and I have an unfulfilled desire to have children. My husband was diagnosed with oligozoospermia. Subsequently, a heterozygous mutation R553X of the CFTR gene was found. Unfortunately, I was then also diagnosed with a mutation in the CFTR gene, namely R117H-T7. In case of a compound heterozygosity in a future child of ours - what would be the consequences? According to our human genetic counselling, a mild form of CF would be possible. What does that mean and how certain one can be? Many thanks.
04.03.2013
outdside games
Hello, Are public parks (slide, swing, etc) not recommended for children with cystic fibrosis? Thanks
04.03.2013
Eradication of Pseudomonas aeruginosa infection
My daughter cultured Pa at the last clinic visit. She was symptom free. The doctor prescribed 28 days of inhaled Antibiotic, and I asked to add an oral antipseudomonal, but she would not. Finished the 28 day cycle, and a week later my daughter has a raging lung infection and now pneumonia. I asked the doctor again to prescribe the oral antipseudomonal. Again she said no, and just told us to start another 28 days of inhaled antibiotic. We were told the oral antibiotic does not make a difference by a new doctor fresh out of her fellowship and entirely too conservative with treatments. I have read the research and early erradication of pseudomonas will give my daughter the best survival options. This is really starting to tick me off because I want a more aggressive approach, and she is being too conservative IMHO. I've talked to hundreds of patients and most who were treated with an inhaled antibiotic alone are now colonized with PA. Although they all still speak strongly that the inhaled is the only answer. ummm ok. I dont agree and I do not follow status quo. Research study being guidelines. We need to treat patients like individuals, but I am looking for any additional advice to back up my findings.
04.03.2013
G542X and another mutation
Hello, I just have a question of my daughters mutations (G542X and c.1210-2A>C). I'm in the states with no answers from anyone here. They said no one else has her two combined but she will eventually have lung disease! She has been diagnosed with CF but has no lung issues at all just gastroointestinal issues. But also have her on hypertonic saline and albuteral for preventative treatment, how long do we do this to prevent lung problems that are not there? My grandmother also had these gastointestinal issues but no one is concerned with her history. Any answers or advice would be great thanks.
04.03.2013
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