Recent content by Helenlight

Is this the same as elexecaftor or is that a different one

That's amazing! Really heartening :)

Hi Ratatosk, thanks for your reply. Yes I think the H.flu is causing her more trouble than we originally thought. She has been put on cefapime and tobi to try and clear it. At my request her iron levels have been checked and they are low. I would have thought that would be treated right away...

Thank you so much for all of that excellent information! I'm very grateful. Lance2020x I would love to be in touch with you and your wife, I will send you a DM :)

Hi Energygal, I only just saw your reply, thanks for that :) Can I ask what your mutations are? How long did it take before you could reintroduce high-histamine foods? Are you still taking Indrepta? Thanks!

Hi, We are moving to Nashville, TN, all the way from little old New Zealand! My husband is originally from New York and our daughter (DDF508)is a dual citizen. The healthcare system in New Zealand is very different- it is publicly funded. Almost all of our CF care has been free, but the...

I thought I would put our current situation to the forums, because I'm not getting clear answers from the doctors, and I'm worried. Our 7 year old (DDF508) has recently (for the last 3 months) been producing copious amounts of thick green/grey secretions. She has always been fairly productive...

Hi, personally I wouldn't be too concerned about this. You will want to make sure the teacher and parents of the other child are vigilant about keeping the child home if they are presenting with a respiratory infection, but if the child is otherwise well, there is no cause for concern. To my...

Thanks Jaimers, yes we joined the group last year and started giving Indrepta C to our daughter (6 yrs) in January. We definitely noticed positive changes in ability to cough up mucus and better digestion. She had no antibiotics for 6 months which is a record. Unfortunately however, her eczema...

That is fascinating fel! I've been looking into steroid's effects and what circumstances allow them to be more rapidly or extensively absorbed, and what effect that can have. This comes after my daughter's eczema turned into something else entirely- extensive red, puffy and intensely itchy skin...

If his poop is floating it usually means there is too much fat in it and he may well simply need more enzymes. In addition: plenty of water, fruits and vegetables and tummy massages can help as well.

Hi everyone, please can you share your experiences with Indrepta and TauriNAC (positive or negative). If you could include the type of Indrepta (A, B, or C) and your mutation, that would be helpful. Thanks!

Oh my gosh I think I cried reading every single one of the posts on this thread! I agree with everyone else here. You are in a major transition place at the moment... you have the 'unknown' hanging over you. That's the hardest part! We are on the other side of that ;-) and one day, you will be...

Gammaw and LittleLab, you are such excellent sources of information! Thank you from all of us. LittleLab you bring up an interesting point regarding sugar types and sweeteners. It has been shown that artificial sweeteners change the bacteria balance of the gut dramatically. I think that in all...