ecorn-cf: App. question list

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ABPA: My 15-year-old daughter (CF) was diagnosed with ABPA. We could not find the source of the mould. Now we want to buy a new mattress for her bed. I had a memory foam mattress in mind, however when testing, my daughter preferred an innerspring mattress and would like to buy this one. Is there a recommendation concerning ABPA?; 11.09.2013

CF test?: As part of an infertility treatment it was found out by a gene test that my husband has a genetic disposition for cystic fibrosis. After ICSI (Intracytoplasmic sperm injection) we have a daughter. Besides a chronic recurring sinusitis with very viscous mucus she has no signs of a disease. I do not have a disposition for CF, therefore she can only have one disposition for it. Or should we have her tested anyway?; 11.09.2013

Cystic fibrosis: I do not know if I am right here, however I am desperate at the moment and do not know what to do next. In my son, 2.5 years old, the mutations Q1035X in the CFTR data base and D1152H in the CFTR as well as in the CFTR 2 data base have been detected (after 4 negative sweat tests). What does this mean for us, will our child be severly ill or is that a mild form? What do we have to envisage, feel a bit left alone by the physicians. What about a further child, should we better leave it, respectively what about the case if I am already pregnant? I am sorry that I bother you with such questions, but I just do not know what to do next.; 09.09.2013

Sweat test in case of atopic eczema: Recently, a sweat test has been performed to my son (2.5 years old)...because of suspicion of CF...result was 45mmol/l...he also has severe atopic eczema, I have read that in case of atopic eczema the value can also be wrong....have great fear and I am totally insecure...Therefore my question, if it would make sense to do another test???; 19.08.2013

How would I benefit from the diagnosis of CF?: Hello, my physician assumes an atypical CF. I have an exocrine pancreatic insufficiency for years (elastase: 65), partly increased blood sugar. Even after removal of the gall bladder I still had gallbladder sludge in the bile duct. Now a fat liver has to be added, even if I do not eat food rich in fat nor in carbohydrates (due to the pancreas) or have otherwise any risk factors. In addition, I have a problem with salt. I have to eat enough salt at each day, now in the summer have to take additional salt tablets, as I am doing very bad otherwise. In addition, I have constipation regularly. Until now a chronic pancreatitis has been suspected. I am 40 years old, female, BMI 19.2. Medication: Pangrol® 40.000 (containing amylase, lipase, protease) at each meal, ursodeoxy cholic acid 400: 3x1, tramadol if needed, at the moment salt tablets. I have been in hospital two weeks ago, due to strong upper abdominal pain. My physician in charge there said, that I should see a human genetic specialist, due to suspicion of atypical CF. At a rehabilitation two years ago the doctors there also expressed this suspicion. My question: What is the good of the diagnosis atypical CF for me? As as far as I read, this cannot be treated (except for the drugs I already take) and I know that this genetic test is very expensive for the health insurance. Many thanks for your efforts! Best regards, Maria G.; 19.08.2013

Diagnosis cystic fibrosis in case of long-lasting irritable colon?: Hello, I am 26 years old, female and have since about 8 years strong and increasing complaints concerning the digestion. These are getting more and more worse and express themselves in chronic obstipation, which is hard to treat inspite of the use of Macrogol and MCP (Metoclopramid) and I have strong flatulences. Furthermore, in the last years additionally phases with strong bowel obstruction occurred, that expressed themselves with pain, a strongly distended abdomen and retention of stool and they partly persisted for weeks. I am a bit underweight for still a long time, at the moment my BMI is 16,8. My sister also has problems with her digestion. Our blood-related cousine died of cystic fibrosis, our father could be a potential genetic carrier. Until now, my diagnosis is called simply irritable colon syndrome, however I am more and more worried and ask myself, if I should be tested for CF or if the diagnosis is very, very improbable.; 15.08.2013

Osteoporosis – necessary measurements: [Please note that the original German question also included questions about the reimbursement from the health insurance. These parts were deleted from the question and answer since they are not relevant for the cross-national Central Archive.] Dear expert team, About the topic CF and osteoporosis I would like to ask the following: About three years ago (at that time I was 44 years old) I had a bone density measurement done for the first time. The values were in the range of osteoporosis. I have always done sports, since more than 15 years I supplement vitamin D with 1000 I.U. daily (and many times other vitamins and calcium). Due to the resorption disorder and my underweight, I strictly follow a very elaborate, high-calorie diet (in the meantime partly parenteral nutrition). The detected osteoporosis was treated with alendronic acid for three years. Under this therapy, the results of another bone density measurement in February this year [2013] only showed an osteopenia. The alendronic acid was discontinued, as it should anyhow not be taken for more than one or two years. In which intervals should be measured now? And how is it when menopause starts (I never had a regular menstrual cycle and it could happen that I notice menopause only after a year). Are there other intervals for the bone density measurement? Many thanks; 14.08.2013

Laser dental treatment: Is laser dental treatment (laser drill) more safe concerning the germ risk than conventional therapy with a surgical drill and saline soultion?; 13.08.2013

Side effects?: Hello dear experts, My son (3,5 years old) has had two positive sweat tests; a gene test is still outstanding. We have been given Creon® (pancrelipase) and multivitamins, which I think are quite effective. Since our son has been taking both, he does not want to go to sleep, has become almost hyperactive and is sometimes very aggressive. Could this be side effects? Many thanks for your answer.; 13.08.2013

CF center care: Hello, my daughter is followed at a certain CF center. I am in contact with other parents whose children are followed in other CF centres. We discuss together the ways how the monitoring of our children is proceeded. I realized that the monitoring of my child was not as regular as others’. Her last appointment was in March, the next will be in August. The last sputum examination was in November 2012. In other CF centres it is scheduled every two months. Similarly, the CF centre has not considered it to be useful to write an "Individualized Homecare Plan" for the childcare centre. So I asked my non-CF specialist paediatrician to complete one. I wonder whether this lack of regularity in monitoring my daughter could have adverse effects on her future. Then, should I require more regular monitoring, or must I have full confidence? Thank you for your answer. Regards; 13.08.2013