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I'd suggest trying to see another CF specialist and explain your concerns and push to have both tested genetically and sweat test and treated as per CF because obviously they are having issues, even if it isn't "CF" the same issues. Hugs and Love

A few thoughts: If you are seriously concerned about removal, I'd find a lawyer to get involved with cps. Re the treatments...it doesn't matter who does it but given the history, the social worker probably doesn't trust your daughter and assumes granddad is doing because she won't. It will take...

Check out slide 19: http://seekingalpha.com/article/4035567-vertex-pharmaceuticals-vrtx-presents-35th-annual-j-p-morgan-healthcare-conference?auth_param=6g2i3:1c79trs:526c5ba977d309f2211bfc034ae22510

Joe, You are right...it isn't legislation. It is a plan. And the plan clearly lays out how to handle prexisting conditions. Saying it wants to replace 20 million people's health insurance is a talking point. Obamacare Hurt many many people. Maybe not those with CF. Will a replacement hurt some...

Republican plan is on line. Read it. It protects those with pre-existing conditions. I'm a policy wonk for "fun". No plan has been posed by Republicans that doesn't address those with prexisting conditions.

Any replacement plan will include protections for those with pre existing or chronic conditions. It may be funding high risk pools as about 30 states had prior to Obamacare, it may be grandfathering plans, it may be offering a special health Medicaid option as states have, but much of the doom...

Oh I am so sorry. I think gamma little one has a stellar ent. Maybe try pm her? Prayers for all.

Hey, I googled fog machines and bacteria and this hit came up. See bottom. Obviously it's just some random person, but fwiw. https://www.controlbooth.com/threads/when-good-fog-fluid-goes-bad.15564/ ps thought of you with new vertex trials for heterozygotes. Hope Tori can get in one. hugs and...

My understanding is that CF lungs look different than "normal" lungs even early. I asked I think at 1 year if they looked different and think they said yes, but still no issues but what is noted says "consistent with CF."

Great question! DS has one annual one. We do a couple weeks before his annual check up and I always call and have them fax report so I can ask any questions at annual. Do same for blood draw although do that locally and X-ray at cf center radiology. They will give specifics in the report and...

A friend shared this with me since our son has lots of GI issues: "When I started thinking about it, when I was having gall bladder "flares" I had diarrhea, cramping with it as well. My issues have been sludge, that Actigall usually clears up. But a little over 2 years ago when I was trying to...

http://www.fda.gov/Safety/Recalls/ucm523959.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery FYI: If you don't, you might consider subscribing to the FDA recalls. I do and have found several long before I heard elsewhere and one I never did that was also recalled for cerpacia...

Please do update. And so sorry your son is having more issues. Please know of prayers. hugs love

I haven't but imnho that's wacked! If anything they should be doing genetic as the gold standard...sweat test is great first easy answer but f symptoms and clinical presentation is consistent and no other diagnosis they should be dong full gene sequencing....

Yes, you can decide the risks you want as can others with cf, but it may well be the person with cf who is the guest speaker or honoree doesn't want to take that risk and believes that others with cf will honor the policy and not put them at risk.

Okay, I'm crying over him sneezing snot! How upside down is our world! Thanks for the update....hugs

Hey Mom, I totally get the wanting to know if the signs point to CF. DS definitely has CF, but I vividly recall trying to get the doctor to say "mild CF" based on xrays, lung sounds, no excerbations...there was just something I needed to cope to hear "mild CF," so my mind could then...

The reactive airways, reached airways, use of steroids, for our DS, is related to an asthma component which also can cause inflammation in my understanding. With the pft did they do albuterol in the middle and retest? If so when you ask for the results make sure to find the pre and post...

Saw your note re the dishwasher and 158 degrees and wanted to share that we just went through the buying a new dishwasher process and none of the generally available ones get that high, much less for 30 minutes. I think the only one we saw that gets that high was a Bosch for $4000. Yes...

Hey mom, i am so sorry...you've been through the wringer. Like you I always extrapolate and think of stuff I've heard, but those with parts of lungs removed have severe damage there and it is ongoing for quite some time...so I don't think that's something to even think about. Hopefully with...