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In my opinion, if someone has two CF mutations, they have CF, period. When a mutation is rare, it means that the doctors might not know a lot about it, but in my view it is not a reason to question the CF diagnosis, your child needs all the preventative treatments and all the follow up that a...

In my opinion, if someone has two CF mutations, they have CF, period. When a mutation is rare, it means that the doctors might not know a lot about it, but in my view it is not a reason to question the CF diagnosis, your child needs all the preventative treatments and all the follow up that a...

Thanks everybody for the comments. I kind of abandonned this and bought a deshumidiier instead. Works pretty well regardless of how long or hot the showers - everything is dry in an hour or So

Thanks everybody for the comments. I kind of abandonned this and bought a deshumidiier instead. Works pretty well regardless of how long or hot the showers - everything is dry in an hour or So

Thanks everybody for the comments. I kind of abandonned this and bought a deshumidiier instead. Works pretty well regardless of how long or hot the showers - everything is dry in an hour or So

welcome to this site, sorry to hear you were misdiagnosed for so many years, sometimes i am amazed how incompetent certain doctors are! Me are lucky to have neonatal screening, otherwise I am sure my dd would have never been diagnosed.BTW she has the same mutations as you.

welcome to this site, sorry to hear you were misdiagnosed for so many years, sometimes i am amazed how incompetent certain doctors are! Me are lucky to have neonatal screening, otherwise I am sure my dd would have never been diagnosed.BTW she has the same mutations as you.

welcome to this site, sorry to hear you were misdiagnosed for so many years, sometimes i am amazed how incompetent certain doctors are! Me are lucky to have neonatal screening, otherwise I am sure my dd would have never been diagnosed.BTW she has the same mutations as you.

I am not sure about Cipro dosing, but from what I know Tobi+ 2 weeks of Cipro is quite typical. It gor rid of my dd's PA twice ;-). Thenumber of cycles of TOBI varies though, and there is no consensus whether this number should be culture based or fixed. We did 3 rounds even though PA was gone...

I am not sure about Cipro dosing, but from what I know Tobi+ 2 weeks of Cipro is quite typical. It gor rid of my dd's PA twice ;-). Thenumber of cycles of TOBI varies though, and there is no consensus whether this number should be culture based or fixed. We did 3 rounds even though PA was gone...

I am not sure about Cipro dosing, but from what I know Tobi+ 2 weeks of Cipro is quite typical. It gor rid of my dd's PA twice ;-). Thenumber of cycles of TOBI varies though, and there is no consensus whether this number should be culture based or fixed. We did 3 rounds even though PA was gone...

Did you mean 3849+10 kbc->T?If it is the case then I think it is something like 4%. If you google it, there is an article (old though), and it state the numbers. There are at least 4 people on this forum, including my dd.

Did you mean 3849+10 kbc->T?If it is the case then I think it is something like 4%. If you google it, there is an article (old though), and it state the numbers. There are at least 4 people on this forum, including my dd.

Did you mean 3849+10 kbc->T?If it is the case then I think it is something like 4%. If you google it, there is an article (old though), and it state the numbers. There are at least 4 people on this forum, including my dd.

I agree with what you say Jonatahn. Where I am it is pretty uncommon to speak up during Dr's appointment, but having lived in the US, I took that habit and I am glad I did. My dd w/cf is only4 y/o, and on 2 occasions the doctors made a mistake (or was about to). I am sooo glad that I followed...

I agree with what you say Jonatahn. Where I am it is pretty uncommon to speak up during Dr's appointment, but having lived in the US, I took that habit and I am glad I did. My dd w/cf is only4 y/o, and on 2 occasions the doctors made a mistake (or was about to). I am sooo glad that I followed...

I agree with what you say Jonatahn. Where I am it is pretty uncommon to speak up during Dr's appointment, but having lived in the US, I took that habit and I am glad I did. My dd w/cf is only4 y/o, and on 2 occasions the doctors made a mistake (or was about to). I am sooo glad that I followed...

I echo on coconut oil. My dd went from 25th to 75th weight percentile on it, and she is PS!

I echo on coconut oil. My dd went from 25th to 75th weight percentile on it, and she is PS!

I echo on coconut oil. My dd went from 25th to 75th weight percentile on it, and she is PS!