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Bill, I am really interested in that study! I know they have identified some modifier genes that they feel impact the disease course for some with CF. I'd very much like to hear about this study too. Re. the original post- no, Kalydeco on it's own cannot help you unless you have a mutation that...

Bill, I am really interested in that study! I know they have identified some modifier genes that they feel impact the disease course for some with CF. I'd very much like to hear about this study too. Re. the original post- no, Kalydeco on it's own cannot help you unless you have a mutation that...

I'm so sorry he had to go back in again so soon! I hope he improves quickly under the care of his team. Please keep us updated.

I'm so sorry he had to go back in again so soon! I hope he improves quickly under the care of his team. Please keep us updated.

Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment???? Oh that is disgusting. <img src="i/expressions/face-icon-small-sad.gif" border="0"> We are taught to sterilize our equipment when we are home- which is a clean...

Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment???? Oh that is disgusting. <img src="i/expressions/face-icon-small-sad.gif" border="0"> We are taught to sterilize our equipment when we are home- which is a clean...

Fortunately the entire team is covered under our insurance at this time. The social worker is covered for clinic visits and there is no additional charge if we see her outside of clinic either, so i am not sure how pulmonary sets up billing for her specifically. Our social worker is very good...

Fortunately the entire team is covered under our insurance at this time. The social worker is covered for clinic visits and there is no additional charge if we see her outside of clinic either, so i am not sure how pulmonary sets up billing for her specifically. Our social worker is very good...

Oh that is just awful. It sounds like both of you have suffered a whole lot more than necessary due to this dr. My daughter went through some very bad experiences as a toddler/preschooler due to misdiagnosis (in her case it was a neurologist) and it became a dangerous situation before I was able...

Oh that is just awful. It sounds like both of you have suffered a whole lot more than necessary due to this dr. My daughter went through some very bad experiences as a toddler/preschooler due to misdiagnosis (in her case it was a neurologist) and it became a dangerous situation before I was able...

I completely agree, Momto2. (and my son was a gymnast for quite a long time.... boy do I understand that one!!)

I completely agree, Momto2. (and my son was a gymnast for quite a long time.... boy do I understand that one!!)

Thank you so much everyone. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Becca'smom, thanks for more input on the NO testing. It's interesting how much testing is available out there and I'll keep it in mind to ask about if we need to keep looking. Christine, you are the...

Thank you so much everyone. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Becca'smom, thanks for more input on the NO testing. It's interesting how much testing is available out there and I'll keep it in mind to ask about if we need to keep looking. Christine, you are the...

I was also very worried initially about how Emily would tolerate the hypersal. Our dr had told us many kids have trouble tolerating it, and to have a strong-tasting drink nearby since she might really hate the taste, etc. Well- after all that build up- she did great with it, right from the...

I was also very worried initially about how Emily would tolerate the hypersal. Our dr had told us many kids have trouble tolerating it, and to have a strong-tasting drink nearby since she might really hate the taste, etc. Well- after all that build up- she did great with it, right from the...

Here is my take. First, I have to admit i wouldn't spend the day upset if I caught my child drinking out of someone else's cup or eating someone else's food etc. There are just bigger things to worry about in the big scheme of things. Important note- this is coming from a parent who did not...

Here is my take. First, I have to admit i wouldn't spend the day upset if I caught my child drinking out of someone else's cup or eating someone else's food etc. There are just bigger things to worry about in the big scheme of things. Important note- this is coming from a parent who did not...

We do know with Shawn that simply treating for asthma did little to help his lung function- we'd been doing that for about 15mos with little change when finally we had to see pulmonary. Really - I should have taken him sooner and I feel terrible that I didn't, but I thought we could get a handle...

We do know with Shawn that simply treating for asthma did little to help his lung function- we'd been doing that for about 15mos with little change when finally we had to see pulmonary. Really - I should have taken him sooner and I feel terrible that I didn't, but I thought we could get a handle...