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Topics
- Hoarseness with Pulmozyme® (rhDNAse)- what to do?
- Dear expert team, For 2 days I inhale one time daily with Pulmozyme® (rhDNAse). From today on, a strong hoarseness has begun. If it should continue to such an extent, I will be forced to discontinue Pulmozyme®, as in my case the voice is all alone important for my profession. Pulmozyme® however, seems to losen my sputum well. Therefore my questions: Are there any chances or ways of therapy that the hoarseness may again disappear inspite of continuation of the Pulmozyme® inhalation? Many thanks for the answer and tips and especially thank you for the running of this forum. Best regards,
- 22.01.2013
- Hyperechogenic bowel diagnosed in the 31. week of gestation
- Dear expert team, I am mother of a child suffering from CF. After 12 years I am pregnant again (however in my second marriage, that means the father of the child is not the father of my child with CF). Unfortunately, at the 3rd detailed preventive chek-up a hyperechognic bowel with dilated intestinal loops has now been diagnosed. Down's syndrome has been nearly completely excluded at two Degum II investigations [translators comment: type Degum II is a German qualification standard for ultrasound investigations]. How high is the statistic probability to get a child suffering from CF with a new partner and a heterozygous mother?
- 22.01.2013
- CF testing
- I have a child with asthma 5.5 years old, 101 cm tall, weight 14 kgrs, born premature with birth weight 2100 grs. Due to low growth we did a sweat test at Hippokration Hospital, Thessaloniki, which was negative (26 mmol/lt). I was checked for CF mutations with negative results. Would you recommend any further testing? The pneumonologist insists that the CF possibility has been ruled out for good. Both parents are 1,65 m tall.
- 22.01.2013
- trypsin normal values
- What are the normal values for the stool trypsin, in order to exclude CF? My child's values was 1/400.
- 22.01.2013
- Swimming in pools
- Since a year ago my child swims in an open pool all year long. Recently they started covering the pool with isothermic blankets (they spread them at night and roll them in at noon). Could this cause any trouble for my child? Need I pay any attention?
- 22.01.2013
- Fireplace and CF
- Ι have a five year old boy with CF. Up till now we used air-conditioning for heating the house. This year we decided to buy a woodstove. Since nothing works perfectly (e.g. there may be smoke leakage), would you recommend the use of a stove or fireplace (with or without pellets) for people with CF?
- 22.01.2013
- Aerosol in an 18 months-old child
- A Pseudomonas aeruginosa has been found for the first time in the sputum of my 18 months-old son. The CF Centre physicians have decided to treat him with twice daily nebulized antibiotics (15 minutes per nebulization). He totally refuses the nebulization and when I force him to do that, of course he’s screaming and crying. So, I am in doubt with the treatment efficacy. Is there another possibility? On the other hand, because of this primocolonization, will my son require regular antibiotics treatments in the future? Is it possible to eradicate this bacterium? Thanks for your responses.
- 21.01.2013
- tap water
- Hello, I am the mother of a little boy with cystic fibrosis and I am surprised it is not forbidden to drink tap water. My CF center tells me that there is no problem [translators comment: this question is from France, so the information is about the state of French tap water] but I'm stumped because water stored is probably full of germs ... Can my son drink the water without worry? Thank you
- 21.01.2013
- EMA (European Medicines Agency)
- Hello, I would like to know what is the role of EMA in treatment research? Thank you in advance.
- 21.01.2013
- chlorination
- Hello, To fight against harmful bacteria for a person with CF, it is advisable to bleach regularly sinks, tubs, toilets ... Does repeated use of bleach be likely to make domestic bacteria more resistant ? Secondly, products or wipes that fight 99.9% of bacteria but do not contain bleach are they as effective? Does too much hygiene also prevent the body to defend itself when it meets bacteria? Are there risks to live in a too aseptic environment?
- 21.01.2013
