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Sorry about posting this OT but I think it deserves everyone's attention. I did my research and this is for real so please take a minute (or two) to sign the petition. Mastectomies becomming outpatient is a travesty! <div class="FTQUOTE"><begin quote>From a nurse I'll never forget the look...

I've decided to start a separate thread for this because it truly is it's own issue and it isn't purely CF related. I'd like to preface this discussion by stating that I'm fully aware this will become a debate which I encourage but do ask that the respondants not only provide their opinion but...

Not sure how many of you caught 20/20 last night but they did a piece on glyconutrients. I haven't seen any recent posts on here about it but none the less the story caught my eye since we'd seen our share of the pyramid schemers on here. This is such a scam and I feel so sorry for the people...

Not like I'm one to talk because I haven't been around much lately but it just dawned on me that I haven't seen anything from Liz (thelizardqueen) in a while. I hope everything is ok. Anyone heard from her?

Is anyone using NAC supplements for their kids? I'd like to start Sean on it but haven't been able to find any dosing information for his age/size.

Has anyone here been following the recent (last couple of years or so) the latest negative info on the use of soy? Thyroid problems, Leukemia, early puberty in girls, late puberty in boys, homosexuality (for the record, I think that one is total crap), increased risk of cancer, etc... There is...

Glad to have you back! Can't wait for an update on how you're doing and what supplements you're having success with.

Well, the good news is that we're home. There isn't really any bad news. Sean's most recent culture didn't show anything new and neither did his most recent x-ray. So, it seems his, low PFT's are because of ??? The Dr. on the floor said it could be an allergy related CF exacerbation. I'd...

Well, Sean had clinic yesterday and the results aren't good. For the last 8ish months his PFT's have been dropping. In August, he was down to about 30% so they threatened hospitalization, started him on oral antibiotics, and started him on HS. Well, yesterday his PFT's were down to 25%, he...

I've been doing some research on food allergies because Sean has had a "rash" forever. The Dr.'s thought it was just eczema but it's not going away. The rash really looks more like little blisters and Sean says they itch like crazy. Anyway, I found that a gluten allergy can cause this exact...

Ok, my DH and I are having a disagreement about this. It's my understanding that we can request whatever we want for a 504 but the school doesn't necessarily have to oblige. It's up to them what actually ends up in the plan. DH says that whatever we want, we get. I don't think this is true...

Ok, does anyone else find this annoying... Someone starts a thread, people start responding, but is anyone actually reading the previous responses. I really hate it when I post a response then later someone else posts exactly the same response. I'm not talking about prayer requests, B-day...

I posted this in the family section too but wanted to hear from some of the adults about what they had or wished they'd had in their 504 plans. "Ok, so this year, we're finally going to put together a 504 plan for Sean. I've got some ideas of what to include from our clinic but wanted to see...

Ok, so this year, we're finally going to put together a 504 plan for Sean. I've got some ideas of what to include from our clinic but wanted to see what others have included in theirs. Any ideas/suggestions would be really appreciated. Thanks.

Sean's Dr. wants him to start on hypertonic saline. She wrote us an Rx but our local pharmacy (CVS) can't get it. She recommended going through the CF pharmacy but our ins. won't cover Rx's from them because it's mail order and they use their own mail order pharmacy. Where are you all getting...

I'm disappointed to see that the anonymous posting is back. I hope it's only temporary because things have been rather peaceful around here with out it.

Today Sean is 10! This is big for me because when Sean was first diagnosed @ 12 weeks old we were told he had PA. The Docs were very tight lipped about what that meant as far as Sean's long term prognosis except for one of the residents. He's the one who very callously told me about PA and...

Ok, Sean had his orthodontic consultation today. He's been going to the orthodontist for a while now but this was his first official consultation (i.e. the Dr. let us know the extent of work needed to be done). Sean needs a ton of work. He's got an under bite, a small palate, missing adult...

I know this has been asked before but I don't remember if it was ever answered? Does anyone have any average data suggesting the time it takes for new drugs to complete trials? Obviously the research phase is very open ended but I was wondering about how long it takes to complete Phase 1...

Hi all, As some of you may remember, my brother and sister-in-law were expecting their first child in March. In spite of all my encouraging neither my brother or my SIL were screened for CF genes. Well, due to complications with the pregnancy the baby was delivered early at 32 weeks. She...