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We're planning a trip next year to Disney and wondered if anyone has used the new DAS cards. We understand that with new cards, if there is an excessive wait time, we'd be given a return time, similar to a fast pass. And that we also need to describe why we may need said card rather than just...

Ugh! I signed up for a conference and now DH has to go out of town and I need to leave DS in the care of his grandparents. While we have it down to a routine -- vesting, meds, meals, schooling... My inlaws aren't exactly comfortable with this and need everything written out in detail. My...

Has anyone been able to get generic Tobi. Apparently the FDA gave Teva approval to manufacture back in October. My pharmacist mentioned he's going to try ordering it for us

So last summer the drug company handling Tobi announces that they're only going to sell to specific pharmacies to save costs, make life easier for us, cut out the middleman.... Since we've had to go thru a mail order pharmacy it's been stressful and according to our insurance statement of...

Last night ds vest starts making a noise like an elephant. And of course it's the holidays. So no delivery tomorrow. Hoping it'll last until Thursday afternoon or we'll be beating ds. 774 hours on this refurbished one. One a good note, the new vests come with locking hoses.

Apparently this doesn't affect Make a Wish Trips, but due to abuse, Disney is replacing their GAC cards with a Disability Access Card. Similar to what universal has where you're given a time to return to go on rides and see shows. Still get your DAC at Guest Relations, but you explain your...

Had a similar issues a year or so ago when DS got a stomach bug and then had issues for a week or so afterwards. Last weekend, ds had issues with very loose stools -- not formed at all and ran a low grade fever Sunday night. A week later he's still having very loose stools -- malapsorption...

When DS was a baby and adeks switched the formula to create Aquadeks drops, I'd gag every time I'd put it in the oral syringe. Smelled like someone had a sinus infection. Nasty. Fortunately he didn't mind or notice. Switched to Source CF Chewables and then to the softgels. A week ago I ran...

As with everyone else got notified late last year that we'd only be able to get Tobi via a drug company approved mail order pharmacy. I had reservations because when we dealt with CF Services Pharmacy before it was very frustrating -- promised shipments not sent, screwed up billing. But mainly...

CFF recommends starting GTT at age 10, so last week when DS had his regular blood work, they also had him do a 2 hour GTT. Drew blood after fasting, drank a cup of orange flavored sugary stuff, then another blood draw after two hours. Fasting Level was normal 87 (range is 70-100 mg/dL), but...

Ds has been taking SourceCF for years. Last month they were unavailable, but I was able to get the soft gels. Every source I check for either appears to be back ordered and now it appears Aquaadeks are also unavailable. I've got enough soft gels for 2 months. Looked into Vitamax; however...

Wondering is ds' vest is starting to go south. Seems to have a different noise, and when it's done with the session it makes a louder higher pitched sound. This one is refurbished, had for about a year after the other one started growling and whining.

Our office is getting quotes regarding switching insurance. Currently we have a BCBS Selectchoice program where we have to pick a local clinic or pay higher fees for out of network providers. We also pay 20% of drug costs plus $15 (one month) or $30 (2-3 month) copay with out of pocket max of...

Ugh! A couple weeks ago I took in our Devilbiss Pulmoaide Compressor because treatment times increased, psi declined and it got louder. Done this twice before. Machine is under a 5-year warranty. Unlike with Pari, the manufacturer requires us to take it to the local DME, they package it up...

Just got an email from CF Care Forward that the Bubble Gum Source CF Vitamins are backordered. My first thought was to switch him to Vitamax Chewables; however, I did a comparison and he'd only get 400 IU of Vitamin D per tablets vs. the 1000 he currently gets. He takes two chewables twice a...

I blame my MIL.. Grr! A few weeks ago DS became obsessed with handwashing, refusing to eat something if it fell off his plate onto the table or onto his leg. It came to a head last week when I picked him up at daycare and he informed me that I would have to feed him from now on because his...

DS has a Hill Rom 104 vest. Has had it for almost 6 years, 2026 miles er I mean hours on it. We've had issues in the past where it's turned itself on in the middle of the night. Only a couple of times and it's been awhile since it's happened. This morning I heard a high pitched wail coming from...

Last week DS had a lung scan. We've never gotten a clear picture with xrays, so every couple of years he gets a lung scan to get a better view of his small airways. Last week his doctor was confused as it showed issues with the larger airways, mainly the right lower lobe. Yet, lungs sounded...

http://www.marketwatch.com/story/digestive-care-inc-announces-fda-approval-of-pertzyetm-pancrelipase-delayed-release-capsules-2012-05-18

This school year has been a tad stressful. DS is in 2nd grade and we've had issues with him getting fairly good grades, scores on his spelling & social studies tests, completes his homework, great behavior marks on his daily calendar. But then we get blindsided at school conferences. Despite...