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Aboveall - thank you so much for finding and explaining!! Now I'm indeed getting excited.. Thank you!!!

I'm praying you're right and Vertex is creating another miracle drug ;-)

Thanks for sharing this Aboveall!! Would a nonsense mutation (class1) really fall into the group of "minimal function"? I fear it would rather fall out of this Vertex study, being "no function" rather than "minimal function " - don't you think? Don't get me wrong, I'd be beyond happy if Vertex...

When I was 22 weeks pregnant I was told Liam had echogenic bowel. My brother-in-law had CF, so my husband and I decided to get a blood test done. When both of our results came back as carriers, we sort of knew that Liam would have CF. Of course we still hoped we we're wrong, right until he was...

That's very interesting, imported_Mom. Just out of curiosity: what do you eat, if you eat no fat? I imagine it quite difficult, to find nice food without fat in it.. And I'm surprised you even have to diet to stop putting on too much weight, without any fat in your diet. Our CF-docs tell us to...

Thank you for offering to answer questions. I have always been wondering whether the new lung will eventually get the same problems with mucus, bacteria etc, and if you still have to do inhalations and vest treatments with your new lung. I mean, does the body turn the healthy, non-CF-lung into a...

My little son Liam was on a Cephalosporin (an antibiotic) for six weeks in April/May because of a very prolonged infection series. In June he cultured Pseudomonas for the first time. I was wondering whether any of you have noticed a connection between the use of an antibiotic (for any kind of...

Hi all, I am crying as I write this. Our clinic just informed us that Liam has cultured Pseudomonas. We will be admitted on Monday to start two weeks of iv antibiotics, and they will start him on inhaled Tobi. I am devastated. He will be 1 on Tuesday. Isn't this far too early for him to culture...

Thanks for your reply! He's not on Zantac so far, and that's exactly what I was wondering.. I think I'll try starting Zantac before we increase Creon even more (which we could, so they said). Our doctor doesn't think he needs an antacid yet, but somehow I think it might help him better than more...

Hello everyone, We have recently been told to increase Creon, because our son wasn't (and still isn't) gaining weight properly. It has been four weeks with the higher dose, without any significant changes of his weight. I was wondering whether it might be necessary to add an antacid. Or change...

It might well be due to a heparin induced hypocalcaemia. If you flush the port quite quickly, the heparin that reaches your bloodstream reacts with the calcium in your blood, so that the amount of free calcium ions is decreased. Some people notice this by exactly the symptoms you describe...

Our little Liam is eight weeks old and we are planning our first holiday as a family. My parents own a campervan, which we used to use regularly and would love to continue using. I would be very interested in your opinion or experience with camping with CF-patients. Our main concern is of course...

Hello again, The genetics result came back today and Liam does have CF. His pancreas elastase is only 17, so we started enzymes yesterday. We are very sad. We can't really believe this cute little man has such a severe disease... Right now we're hoping it won't be all that bad..

Hello again. Here's a quick update on my original post, and some more questions.. Liam was born 10 days ago and so far he's doing fine. He luckily didn't have any Meconium problems, and has been having 3-5 rather noisy bowel movements per day. The stool is yellow, somewhat slimy and does not...

Hello everyone out there, I'm hoping for some answers of other patents who found out about the child's CF during pregnancy, or of anyone else who might be able to help.. I have been wondering whether there might be a connection between the potential CF of my unborn child (38th week of...

Thank you all so much for your answeres. I appreciate your experiences and good wishes very much, and they have helped me deal with this situation. I'm still afraid of what it will be like, but we're trying to be optimistic that it will all work out somehow. Thank you again, everyone.

Thanks for your answers. It is good to know we're not alone with this, that so many other parents have gone through this stage. Still scared as hell.. They said they would do ultrasounds every two weeks to see whether the bowel dilates or not. If so, they said they would fetch him early to...

Hello everyone, we found out a couple of days ago that our unborn son (31 weeks) will very probably have CF. He has had an echogenic bowel since week 24, which is why my husband and I were tested for any CFTR- mutations. I have R1162X, my husband dF508. We were shocked when we found out, and can...