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LEZLY UPDATE 1:30PM: Lezly's CO2 level this morning was 77.0 and her pH was in normal range. We were hoping for a bigger drop in her CO2... then about 11 the pulmonologist came in and made some changes on the vent machine... they did another blood gasses test at 1 and her CO2 levels had dropped...

I for sure will keep her on it as long as I can, it's her dr that is not believing that it is working. He said that peoples lung function can go up and down like that and that it is not due to Kaly, but I tend to disagree, because we Never go this long with no cough and especially no sniffles...

Oh wow, that would worry me too! I'm not sure what I would do, but that is very serious. I think I would first consult with your childs dr and get their suggestions and pick their brains for every bit of information that they could give you and get a note from the dr explaining all about it...

I just wanted to chime in. I don't have CF but my son and I do suffer from severe allergies. I was sick with sinus infections probably more than I was well. We are both on immunotherapy now and our lives have completely changed!! It is wonderful!! I know everyone is different, but I am one...

Lezly update 8:25pm: Well ...what do I say? Dr N said that altho the co2 was lower than yesterday, it was still not enough. He said we can't stay in neutral and we need to do something. So tomorrow they are going to start weening her off of sedation and see what happens. She opened her eyes...

No I must have missed that somehow!! The only thing is her ENT would have to get another CT scan done, and I don't want to expose her again without having a problem because she has already had 12 CT scans done. :( But oh how I would love to know!! I have decided to make an appt at our local...

I have heard that and thank you so much for posting this article so I can further read about it!!

Wow!! You weren't kidding, we DO have a lot in common!! LOL So do you know what her second mutation is? Or is she a DDF508? Glad to meet you by the way :) I hope more speak up about using it off label, I am so curious about everyone's experiences.

I am so sorry, my brain is failing me at the moment LOL I'm sure we've talked before but I can't remember no matter how hard I try. I hope you don't think I'm rude, would you mind refreshing my poor memory :) I just posted an "Abby update" in this section if you don't mind looking, hate to...

I've quit hearing of anyone trying Kalydeco off label. Is there anyone out there that is taking it or plans on trying it off label? I'm just so curious! And it seems to have kinda died down all of a sudden. Anyone out there trying but hitting a wall?

Has anyone heard anything further on the PTC124?

Well I have been just laying low and just praying and watching. So I wanted to share with everyone what's been going on with Abby since I haven't posted results in a while. We have changed how we give her the Kalydeco as suggested by someone either on here or facebook, I can't remember. We...

Lezly update 6:35pm: We just talked to Lez's dr. He was disappointed and concerned that the results showed a rise in the CO2 level but he said disappointed but not defeated. He prescribed a diuretic for fluid retention and potassium and also a steroid to reduce the inflammation in the...

I can't answer the sweat test question but my little one came home from the hospital eating 4oz! She could eat way more than she should be able to. Also she would have 4 to 6 poos a day, and they would stink to high heavens. If he is not digesting his food properly he can seem bloated with an...

Abby has always had sweaty palms and feet. And yes she wrinkles pretty fast when in water. :) Abby is always going 90 to nothing though...ALWAYS so don't know about the lethargic part :/

They considered at one point in time putting Abby on that when we couldn't get control of her nasal polyps but decided it would be a LAST resort effort after every other option was completely exhausted because it is very VERY hard on the liver and kidneys is what they told me. So I decided that...

Sorry for the delay!! I've been swamped this morning! Lezly update 9:55AM: We've been in and seen Lez. The results of the blood gases test done earlier show a little bit of a rise in her CO2 level to 83. Not the direction we were looking for but we are still believing that there is a plan...

I agree with Ed that it could be allergies or if his sinus' were bad it could be that he is coughing due to post nasal drip. When Abby's sinus' got to the point when surgery was needed she did just as your son is doing now. While on antibiotics the cough would go away and within 2 to 3 days of...

Sorry guys...here's the latest update(hate not having internet at home and bad cell service :( ) Neen Hodge: Lezly has had a good day! She was able to tolerate one of her breathing treatments better today and they even used CPT on her without her heart rate going down. X-ray showed some...

Lezly Update 8:25pm: "Well, we talked to Lezly's CF doctor. Her stats are looking better but they've had to turn up the settings on the ventilator. And that's not such a good thing. Her breathing is not as good as it has been. She's still holding on for now so we "stay the course" on what...