Topics

Extreme hand wrinkling
Hello, I currently am experiencing extreme hand wrinkling within minutes in a bath tub or shower my hands are extremely wrinkled and burning or tingling. I do not have Cystic Fibrosis or diabetes...I do have JRA.. Does it have to relate to a disease?
27.01.2014
Abnormal sweat test
My 6 year old has had complications from birth and is in the 5 percentile for weight and height. At 6 weeks old he was hospitalized for an extended length in time for R.S.V. and has issues since then. He has had bronchitis a few times, croup, had two adenoid removal surgeries, a tonsillectomy, been diagnosed with chronic sinusitis, and is generally always sick. He coughs up lots of dark green and yellow phlegm, and has coughed up blood several times (which has been said to be due to the sinusitis). He also just has his nasal passages opened because the infection was to thick to drain on it's own. Meds don't clear it up.We recently started seeing a new doctor because his last doctor kept saying it was allergies and asthma and all of the medication he put him on wasn't working. The new doctor wanted to start over and rule out everything to try to get to the bottom of his illnesses and sent him for a sweat test. I received a phone call last week that his test results were abnormal (his sodium chloride level is a 53) and we are now being referred to a children's hospital for further testing. I was just wondering what the outcome of the second tests may be (are they usually similar to the first results?) and how likely it is that he would be diagnosed with cystic fibrosis or atypical cystic fibrosis. He is mildly salty when I kiss him and his bowel movements are sticky and tar like at times, and also strange colors (like bright blue, green or yellow). He has been to the emergency room with stomach pains several times. Thank you
27.01.2014
Low weight gain
My son is 9 months old with low weight gain. When he was born we decided not to do the neonatal testing. For 15 days now, his feces are like mud and have a strong smell. He has 4-5 movements daily. We, the parents, were not tested prior to the pregnancy. Should we worry? Do we need to get tested?
27.01.2014
Query for testing
My daughter is 10.5 months old, weighs 9.2 kgr and is 77 cm tall. Her growth up till now has been always good. Her bowel movements are regular throughout the day. I have not observed anything special as far as smell or quantity is concerned. Since 3 weeks my daughter has a cold and wet cough that persists despite the antibiotics. I am worried because my husband is a carrier of a CF mutation. I was tested for 95% of the CF mutations with negative results. I am aware of the fact that I may carry a mutation that belongs to the rest of 5%, or a mutation that is not detectable. Do you think it is wise for the child to do a sweat test or other tests, or should I wait and monitor the child’s symptoms? I gave birth at a public hospital (Areteio) where the IRT test is not performed. I was not aware that this test is performed in private hospitals, so I did not keep any of the child’s blood for testing it in a private laboratory. Should not this kind of testing be compulsory for all hospitals, public ones included? I chose to give birth in a public hospital because I trust the doctors and not due to money issues. I now feel guilty because my child did not have an important test. Should not this testing be expanded to include all hospitals?
27.01.2014
CF?
I am 31 years old and I lately have the feeling that mucus is slipping down from my nose constantly. During the last years I have constantly “colds”, almost chronically “thin”. Searching for an explanation I found CF. I don’t want to, but should I get tested?
27.01.2014
Flutter
Hello, We are about to buy a flutter but we have seen that there are other devices especially GeloMuc®, for example. The price difference is doubled while the devices appear to be the same based on the description we found. Can you tell us the reasons for such a price difference? The GeloMuc® which is twice cheaper than the flutter, is it as effective? The French CF Association tells about the flutter in ist brochure. Thank you.
27.01.2014
Trampoline
Following questions raised previously on the benefit of trampolines, I would like to know: at what age their use is beneficial? Thank you
27.01.2014
Risk of lung function test
Hello, I am 35 years old and due to an unfullfilled wish to have a child a genetic testing has revealed a mutation (F508, a full sequencing will soon be done). Because of my infertility (even if sperm ducts are present) my physician initiated a sweat test. Result 46 (control area). In the department of pulmonology, a lung function test had been performed. At first, there was no pathological finding. Everything was o.k.. As I suffer from allergic asthma, soon a CT of the thorax and an investigation of the upper abdomen is planned. Also blood values and stool are investigated at the moment (vitamins etc.). A further symptom: I have hippocratic nails. Otherwise I feel 100% fit and do not have any restricitons (besides that a nostril is closed chronically for 10 years). All together, an atypical respectively mild CF?! At the moment, nobody knows anything precise. To my question: I have read that there is a risk of getting infected with a dangerous germ at a lung function test in a specialized center. These germs can do a lot of damage to CF patients. In spite of that I have been reassured that everything has been disinfected and patients with clinical findings do the test at other times than those with not such a clear situation, I am very insecure. How great is the risk to get infected during the test via strong breathing and which consequences could this have respecitvely how can I realize it (first signs)? Many thanks for your help!
27.01.2014
Bronchial congestion
Hello, My 18-months old CF boy has presented a rhinitis last week (this was a loose cough with a clear runny nose). Our physiotherapist said that supplementary sessions of physiotherapy were not necessary because the bronchi were symptom-free. On the other hand the physiotherapist of my friend, who has a CF girl, advices to increase the physiotherapy in case of loose cough. What is the correct attitude? What to do when a bronchial congestion is present? Do we have to contact the CF centre for every rhinitis or cough episode or is a pediatrician sufficient? It’s not so easy to know what to do … Thanks for your response.
20.01.2014
Demineralized water and antibacterial hand gel
Once opened, how long can an antibacterial and antifungal hand gel for the preparation of aerosols for my child with cystic fibrosis be used? Do you recommend some in particular, maybe more effective in relation to the disease? How long is the deionized water useable, once opened for sterilization of aerosol kits? Thank you for your advice
20.01.2014
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