Topics

Oxygen saturation at night
Is it necessary to wear an oxygen mask with an average value of 91 (without mask)?
05.01.2009
Registration
Hello, my child has CF and I work in the medical field as a therapist. What is the difference between registering as a) a family member or patient, or b) a care team member? Are there different kinds of information available for each, and should I then also register twice (with two user names and passwords)? Many thanks.
05.01.2009
How to get consultation for CF child
My child has CF. I would like him to be consulted by Dr S. Dumcius. What hospital is he working?
05.01.2009
Sweat test
Hello, I want to ask You what is normal level of sweat test, our daughter had 28 and they said that it is negative but it would be good to repeate it?
05.01.2009
Pseudomonas
Dear Expert team! If a drop of water contains Pseudomonas aeruginosa, is it possible that the bacterium survives if the drop dries out?
05.01.2009
RSV-vaccination
Our daughter, (CF, 1,5 years) was immunized last year against the RS-virus. Since this winter we expect the health insurance to decline an immunisation (for financial reasons) we would like to know from you how important you think this vaccination is (so far she does very well), because we think of accepting the costs ourselves.
05.01.2009
bronchiectasis
Our son (23) has problems with viscous mucus, pulmonary infections and nasal polyps (3x nasal surgery) since the age of two weeks. There are bronchiectasis in the upper lobe and he is colonised with Pseudomonas aeruginosa. There is no proof of CF. He recently was admitted to a regional hospital and had a lobectomy of the left upper lobe. My question: in which hospital in Holland is the most expertise in the field of bronchiectasis, which Professor/Doctor is specialised in this field ?
05.01.2009
Dogs
Is it necesarry for a CF patient to take extra measurements and for instance not have dogs ?
05.01.2009
Cystic Fibrosis
My daughter has an elevated sweat test value. 60-80 would be normal. She is at 75. The test was done due to an anal prolapse, and she is also small in stature. The test will be repeated in February. I am all run down. The doctor says there are 1200 sub-groups and the disease will not necessarily appear. And who could it come from, since it is hereditary.
05.01.2009
Baby does not gain weight (follow-up to an earlier question)
Dear expert team, I already asked a question about the issue „baby does not gain weight (being exclusively breastfed) on July 31, 2008. Thank you very much for your answer. Unfortunately since then the situation did not improve at all. On the contrary, he is growing thinner and thinner. In the meantime our now six months old son was in hospital again. He had bloody mucilaginous stools. The reason for this could not be found with 100 % certainty even after a colonoscopy. It is supposed that this was due to a CMV-Virus infection. Anyway, after some time the stools improved on their own. The former upper lobe atelectasis nearly disappeared. Only a small number of shades are still to be seen in the x-ray. He still coughs relatively often. Because of heavy coughing fits he vomits, especially after meals. That occurs several times a week. In the majority of cases he then does not continue to eat (drink), thus he misses a complete meal. Additionally his gall function is never correct although Ursofalk was increased up to 2.5 ml. Unfortunately he did not gain nearly any weight yet. Now, at the age of 6 months, he only weighs 5700 g. That is although he currently is drinking a bit better. We were advised to start supplementary food at the age of five months. This we did. We use the normal glasses of baby food you can buy and mix it with a bit of oil. Sometimes the purees are eaten in small quantities, sometimes absolutely refused. Apart from that he is still being breastfed, with each breastfed meal ( about 60 to 100 g) he now gets 3 ML Kreon for children. The breast milk was never examined (which you advised). Nor was the oesophagus examined – however, a ultrasonic examination of the abdomen was performed. In the CF-clinic we were told that the lacking weight gain is due to the many earlier problems he had. We think it there is a different reason, because currently he is sort of healthy and in a good temper. He is eating a bit more food, but all that does not seem to have any effect whatever. Sadly we feel that nobody can help us with the issue of lacking weight gain. With kind regards Roman K.
04.01.2009
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