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When DS was diagnosed, the hospital sold us (via Apria) a Pari Pro Neb Ultra and from day one treatments times took forever -- albuterol/atrovent took 20-25 minutes, but we didn't know any better, didn't know it was probably faulty. When he was prescribed tobi at 3 months, treatments took...
When DS was first diagnosed the NICU sent us home with a bunch of medicine cups, oral syringes and tops. And I purchased a BUNCH of 1 ml, 5 ml and 10 ml over the years, along with caps. I still have enough of the bigger syringes, but with some of the stickier meds -- sandoz brand zithromax --...
I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was...
DS had a "well child" visit today (regular peds) and also had his labs, culture & xrays done for the year. I was disappointed to find out that he's gone down in weight -- 25th percentile He's usually been at 50 or higher. He's been more active -- playing outside at preschool, gymnastics or...
Sort of a spin off about the having children topic...
Until we had DS 4 years ago, DH and I got the typical "when are you going to have kids" questions from "well meaning" friends and relatives. We just waited 12 years until we felt we were financially and emotionally ready -- had planned to...
Noticed last week that our pharmacy didn't have adeks vitamin drops -- attributed it to the recently diagnosed newborns in our area -- previously the gastric bypass patients were to blame.
This morning went to pick up some scripts and they were still out. The pharmacist indicated their...
DH's cousin has a 6 year old, who has always coughed -- never heard him not cough and I guess after several bouts of bronchitis, he was tested for asthma.
Last weekend we went to a graduation and as they were leaving, he started coughing and it was "that cough" -- the one I hear when we went to...
Argh! DS was farting around at the dinner table on Monday night and accidentally spit out one of his enzymes on the floor and didn't tell me. Saw it on the floor just as the new dog ate it. Sigh.
Toddlers, puppies -- enough to drive me to drink!
Saw this article online when I googled CF news and it's a nice article, but it kinda bothers me that the older CFer, whose quoted as saying she spends $6000 a month on one of her nebulized antibiotics, is shown in a photo holding an 8 month old CFers from another team who was diagnosed thru...
We usually get DS's neb cups from the RT department at the clinic by the bagful. And the past few times we've gone to the clinic, I haven't asked for any. Last month I switched out all the neb cups and the one we use for Pulmozyme is faulty -- plugged up and the tube pops off during...
Whoops, meant to post under nutrition. Sorry!
Last year I picked up some Fage brand greek style yogurt at a Trader Joes in the City. Has about 260-300 calories per serving. Comes in Plain, or Plain with honey, cherries or strawberry. Not very tart, really thick. I've also gotten a couple...
Ugh! Rain forecast for the entire weekend. It's been raining off and on all day -- tomorrow they're predicting "only" a 60% chance of light rain with possible Thunderstorms. I ran to Target and bought a few rain panchos. Just got an email from another team leader from up north -- she bought...
Okay, it's not really a CF issue, it's a picky toddler eating issue, but lately DS has been throwing FITS about dirty food. We went out for steaks a few weeks ago and he complained he couldn't LOOK at my plate -- filet, mashed potatoes & gravy... 'cuz it was dirty. Same thing happened last...
I changed out all DS' pari neb cups this past week as he was starting a course of Tobi. And I noticed that the treatment times increased significantly. We use a Devilbiss Pulmoaid that's only about a year old.
Usually the Duoneb (Albuterol & Atrovent) takes about 12 minutes and the tobi takes...
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Saw this mentioned on another site. Looks like some sort of percussion machine -- just skimmed the webpage, looks like it's available in Canada.
DS has an appointment later in the month and this is going to be the first time we've stayed at a hotel while using the vest. We've travelled, stayed at other people's vacation homes and done the vest. Just wondering if hotel security is going to pound on the door wondering what the heck is...
DS was put on Pulmozyme by the local clinic. It's just that they do when kids reach a certain age, put them on it. We'd asked our primary CF doctor in the city what he thought -- he said it's a good drug, wouldn't hurt. He's got patients on it, and/or mucomyst and really doesn't see a...
Yesterday DH's cousin mentioned that she's been on the phone for the past two weeks trying to get testing done on herself to see if she's a carrier. She has one child and they're planning to have more, but would like to find out if she is a carrier before proceeding. She started with her GP...
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