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My kids have both started Cayston over the last few months. Every time a new supply of Cayston is shipped, it comes with a new Altera handset. Am I supposed to use a new one every cycle? The old one still works perfectly, it seems so wasteful. Do you use a new one every cycle?

Yeah, when I call our homecare company, they send a guy over with a new one same day, and it usually has 2 new nebs in the box. It's not like it's a pain to get a new one, I just always wondered if they are thinking "Again?!" when I call every 6 months. :P

got a new one today. We'll see how long this one lasts

My DD has one, my son has an Inspiration I think? Anyways, his compressor has outlasted 3 Pari Vios. After about 6 monhs they just seem to stop working. The filter is clean, we tried new hoses and such. It is taking her 3X as long as him to do the same meds. The output of air gets so weak, and...

Our day is usually like this: 7:30 am: wake up, get dressed, brush teeth, breakfast, oral meds 8am: inhalers and vest (nebs if on sick plan or on Cayston that month) 8:30 DS goes to school 9am: DD inhalers and vest (nebs if sick or on Cayston) 11:45: DD goes to school 3:45: home from school...

We start sick plan immediately, first sign of sniffles or cough. For us that is increasing vest and nebs to 3-4 times per day and a lot of nasal saline. If they are not getting better after 3 days or getting worse, the CF center wants us to call. If you are unsure over whether to call or not...

So good news. He was not admitted. ENT did a scope and said his nose was great, no polyps and not a lot of mucus. His PFT's were 130! Highest they've ever been. Probably due to the fact that he was on orapred. Plus he's been on the Cayston for a few more weeks since last PFTs. Doc says he...

Fly, I personally would do anything to to fight to get those numbers back up. Maybe you could discuss trying some asthma meds with the pulm and see what they think? Couldn't hurt. I saw a post on here a couple weeks ago where a child's PFTs dropped and came back up even better than before on...

fly, I don;t know what losec is, but does your DD do any inhlaed corticosteroids? Maybe she has an asthma component to her CF like my kids do. It might bring her pfts up. My kids' doctor is always pushing for their weight-to-height to be 75%, they say people with better weight have better lung...

The doctor said that 100% is good, but it's concerning that there was such a big drop, especially without showing any symptoms.

if it was ABPA, wouldn't his cultures show aspergillis?

They have not done an IgE check, I will ask about it on Thursday. He had a CT scan 2 years ago and nothing since, so I already planned on asking about that if the numbers aren't up.

He My almost 8 YO son's PFT's have been down for the last couple of months, from in the 120's to around 100%. He is not having any symptoms of illness except for an occassional cold, and is not culturing anything new (he cultures PA or steno from time to time). The doctor put him on antibitoics...

from what I read on the CDC website, they will be contagious for 5-7 days after showing symptoms, possibly longer in children. Looks like we'll be missing them this year :(

how long are you contagious with the flu? My sister came down with it a few days ago and her kids today. They are supposed to be visiting for Christmas. Is it the sort of thing where you are contagiouos for a couple days or are you contagious as long as you're showing symptoms? My kids got their...

This child needs a full gene sequence through AMbry genetics. His second mutation is probably one of the rarer ones. He has a lot of classic sympoms of CF, in my opinion. Keep pushing for the full panel and do not back down

We tried out a dose, so incredibly fast!! And they sent us a sterilizer to go with it! I'm so excited, it's a little pathetic!

I used Rite Aid before we switched to CF Services, and never had any issue with Tobi or Pulmozyme. They did however mess up and give us zyrtec instead of zantac, and wrote he dosage on a med as 5 teaspoons instead of 5 ml (5 X the dose!)

Somehow my DD wound up with the Hillrom vest and DS ended up with the Respirtech. They both have pros and cons. The Vest from Hillrom is much quieter than the respirtech. The Respirtech has better hose connections, with a latch so they don't pop off. They are both easily programmable, but I...

I think you should be ok. Our pulm told us losenges and even cloraseptic spray are ok