Topics

MRI for a 5-year-old child?
Hello, we have a 5-year-old child with CF. Our child is doing very well. Up to now, no problematic germs have been detected and the lung function is also very good. Now we have been told at the last visit of the CF center, that one would like to do in future an MRI with our child in order to detect possible changes of the lung early, if necessary also with mild anaesthesia. Now I am a bit conflicted about that. On the one hand I have worries that this procedure could be too stressful to our child (lying 20 minutes calmly in a pipe) and we may by this jeopardize the until now relaxed visitis to the CF center. Also a possible anaesthesia causes me quite a headache. On the other hand, we as parents are interested in detecting possible changes of the lung early. Adult CF patients are only shaking their head if I am telling about the idea of our CF center. An MRI would be only in question for them if there would be any health problems. But perhaps the early MRI is today an important part of the more advanced CF-therapy? What is your opinion about this? Is it necessary to already perform at this age an MRI? The CF center says that the advantage of the MRI is that it has no radiation. Until now, an ultrasound had been done yearly. However, in the MRI one would see the changes of the lung more clearly. Many thanks.
05.06.2013
pseudonomas aeruginosa
On which fruits and vegetables can Pseudomonas be found?
05.06.2013
healthy carriers
My niece has CF, the whole family has been tested and two other children are carriers. So 1 out of 7 children has CF and 2 are carriers. The other two children are compared to the non carriers often sick, so I told my sister in law who I thought was carrier of CF in her family. This was correct! Now my question is if carriers are more susceptible to bronchitis and other problems? After research I did not find anything about it and I don’t believe it is a coincidence. Best regards, H.
03.06.2013
Burkholderia cepacia complex
Hi my sons cough swab results came back saying he has burkholderia cepacia complex. I've had to send another swab but not sure why. I have read up on this infection and from what I understand I am very worried. Can you tell me what I should expect to happen and what the likelyhood of completely getting rid of this infection is, please.
03.06.2013
Gene mutations DELf 508 and 3300_3014del
Dear Experts, I´ve already asked in March but my question has not been answered (up to now), so I try it again: I would like to know, if there is any information about the Mutations-combination: delta f 508 c.1521_1523 del and 3300_3014del, heterozygote? What kind of Mutation is the 3300_3014del- Mutation? I couldn´t find any more precise information about these kind of CF-Mutationscouple. Thanks in avdance
03.06.2013
G542X /5t and PA
My 7 year old son was diagnosed with carrying g542x and 5t. This diagnosis was made when he was 6 years old after experiencing syringeal akrokeratoderma in his hands (exessive wrinkling of the palms). He has a sweat test of 39 and then 40. The wrinkling of the hands only lasted for about 3 months. My son also has inserted ear tubes at the age of 2 and 4 due to fluid build up. We were told that our son would experience sinus infection and the possibility of the absence of his vas deference and not to worry. However the CF clinic wanted to observe him every 6 months. Recently my son had a wet cough which lasted for 5 weeks. He was seen by his pediatrician and confirmed that everything was ok, just had a regular cold. During our recent CF check up, my son was diagnosed with pneumonia for the 1st time and was given amoxicillin (80) for ten days and the cough has disappeared. However during the CF check up they performed a throat swab culture and the results came out positive for PA (Pseudmonas aeruginosa), it was negative 6 months ago. The doctor was surprised as he said that PA only appears in classic CF patients and asked us to repeat the test this week as well as a complete genetic panelling for the other 1500 CF mutations. I did not know anything about PA until I came across this wonderful educational web site and I thank you for that. However it has gotten me extremely worried and started to disinfect my home with chloride. Is it possible that we will find another CF gene? I will be getting the results in 2 months. Also I have read that if PA is cought early it can be treated with a success rate of 80 percent. What is the definition of early? My son has level 1. What is the best treatment to eradicate PA? And what can I do to ensure that he does not get it again? From the bottom of my heart I thank you for taking the time to answer my questions. Worried mom M.
29.05.2013
turf
Hello, I read in one of your answers that children with cystic fibrosis could enjoy green spaces, but can you leave a baby with cystic fibrosis crawling in the grass? Or be sitting in the grass (he touches the grass and put his hands in the mouth)? ... The erath may also be a tank of Pseudomonas aeruginosa? Thank you
29.05.2013
Transplantation and horse-riding
Can one pursue horse-riding after lung transplantation ?
29.05.2013
Poultry keeping?
Hello, We have two children, 4 and 6 years old. Our little daughter has CF. We are thinking about buying chickens. Would you advise against it because of MRSA or other pathogens? She will, of course, not clean the chicken house. Thank you.
29.05.2013
CF and swiming pool
Are swimming pools safe for children with CF? What do we need to know?
29.05.2013
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