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Nursery
What kind of childcare is recommended for a 2 months old CF baby? Home care or childminder?
24.11.2015
Pancreatic Insufficiency
Hello, My 14 months old CF daughter was diagnosed one month after her birth: DF508 and G3272-26A mutations. After her birth, she was 237 for fecal elastase, which means she was "pancreatic sufficient." In her annual report last month (14 months old), the fecal elastase showed a rate of 167. She is very well, her stools are normal and she measures 77cm with 11kg, so she has a very good evolution. My question is: I read on different sites that a normal elastase exceeds 200 and on other that it's 150. What is "standard"? Does the drop of fecal elastase mean that she should expect to become pancreatic insufficient? The ultrasound showed that her pancreas was "fibrous": are there consequences on pancreatic insufficiency? For now, our CF center has not prescribed pancreatic enzymes since there is no sign of pancreatic insufficiency. We monitor and will control elastase during the year. About respiratory symptoms: she has a score of 24/25, what does this score mean? Secretions were visible in her right lung, with daily sessions of physiotherapy she has from birth on. Can this go away? Is it serious ? She's colonized with staph aureus but asymptomatic since birth. Thank you for your valuable answers, Thank you again. A.
24.11.2015
CF?
Hello, my 3-year-old daughter has had several anal prolapses. She has quite some mucus in her throat up to 3 weeks after her colds. The sweat test was negative (27 nmol/l for the measurment of conductivity), regular stool elastase (over 500) and 50 mutatios in the test were negative. The mother and the father suffer from sinusitis every year (mother, father acute and chronic). CFTR-gene sequencing of the father and the sweat test were negative. The 5th test of mutations of the mother was negative. The height of the child is small (the elder sister is even smaller) and the weight is normal. Both suffer from hard constipation. Is CF possible? Thank you
15.11.2015
Waiter in catering business
Hello, I have employed in my catering business a person suffering from CF. In order to protect her of eventual health risks, I would like to know, if I can put her on cleaning the guests toilets sporadically, or if I should better not mention it in her description of her duties. She herself does not demand a special treatment, the protection of her health corresponds to the guiding principles of our company. Can the prepared cleaning water on the cleaning car be used for more than 12 hours? A new rag is used for every cleaning. Do we have to take more things into account? Many thanks for your answer.
15.11.2015
porta neb
Hello, We changed my e-flow device for a porta neb by respironics Philips. I don't know this device so I am not very trustfull particularly for the pipe and the powered air. I'm questionning myself about the absorption of antibiotics. Can you give me some more informations? Best regards.
09.11.2015
Impaired glucose tolerance and diabetes
Hello, a CFTR-related diabetes is always preceeded by the diagnose IFG (impaired fasting glucose) or IGF (impaire glucose tolerance). The other way round: do all CF patients with IFG and/or IGT develop CF-related diabestes? Or are the imapired values of IFG and IGT common in CF and do not predict a coming diabetes? Best regards,
09.11.2015
Which mutation has more need for therapy?
Dear expert team, my son (4 years, CF) has the following known mutations: delF508 (inherited by me) and on the other allele R1070Q-S466X. The R1070Q is a missense mutation, the S466X is a nonsense mutation. In case of this rare combination, a marked pancreatic insufficiency has to be expected, and it is like this in my child. The new medications that are investigated, e.g. Kalydeco®, Ataluren® etc. are only suitable for one class of mutations. My question is the following: how can in the future be decided, which of the two (or of all three) mutations has more need for therapy? I hope my question ist understandable and thank you very much in advance.
09.11.2015
Mutation update?
In the year 2003 my genotype had been confirmed to be compound-heterozygous for the mutations DF508 and 405+1G->A. At that time, about 1300 mutations were known. Today the number is about over 2000. Would it be sensibel to have a new mutation update done after 10 years? It seems to be reasonable to me that possibly all patients know their mutation profil "in time" (knowledge for the participation in studies...etc.) Regards and many thanks, CF patient from Switzerland, 46 years old
09.11.2015
Long-term recording of lung sounds
Dear expert team, is there the possibility to record for a longer period of time (the night) the sounds of the lung and the cough etc. by a device (LEOSound). Can that be helpful in case of CF, e.g. for the diagnosis or for the control of the sucess of the therapy/ course of the therapy? Many thanks already for your advice. Here is an explaining video about the technique: http://www.youtube.com/watch?v=qu8lUOhssh4
09.11.2015
Disposable jetnebulizers
Hello, Our 19 year old daughter uses the PARI BOY with disposable kits for PULMOZYME, colistin and TOBI. Our service provider recommends us (on the advice of EMERA network) to stop using disposable kits and use a device that should be sterilized every day, why? In her student life, this is not manageable, disposable kits are so simple to use ... Are there any differences in efficacy of treatment? Thank you for your response.
26.10.2015
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