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Finally arrived this morning. Usually we have a little bit of a warning -- starts growling, throws an error code and then works fine after unplugging, turns on mysteriously by itself at night... This time, just found it turned on by itself with an error code. Not surprising that it did...

Out of the blue at 11:30 pm last night, DS's vest was no more. Came downstairs to see a call for service message with an error code. Tried plugging and unplugging to no avail. Left a message for the Vest provider which had since closed. Sigh. And they never called back, so I contacted...

Medical equipment doesn't count toward your carry on allotment. I've rarely had issues with the vest fitting in the overhead compartment. I once took a smaller plane and was able to place it under the seat in front of me with no issues. We always take the vest bag and a backpack containing...

We're in the states and we use a Pari Vios for travel. We used to have a Devilbiss Pulmoaid as well for home use, but it's a bit bulkier. Both we've used with Albuterol, Dnase (Pulmozyme) and Tobramycin nebs. I purchased both online and paid out of pocket rather than going thru insurance to...

A friend of mine's daughter had issues with overheating even in the winter time -- she couldn't wait inside in her winter coat waiting for her mom or the bus to pick her up because she got so hot. It helped once she was put on kalydeco. So could be whatever mutation your child has affecting...

Awesome! I'm sure M and his cousins would be all about making slime.

Ditto on the infection control. Especially if there are other CF patients on the floor. Gown up. Mask up. Use hand sanitizer. We don't need you bringing in stuff from other rooms and vice versa. Try to keep on schedule. If vest/neb treatments are scheduled every 4 hours, we need to...

I don't have information on your son's mutations. As a parent, I too wanted to know how my son's mutations would present and what the future held. Even within the same mutation, there can be varying results. A lot depends upon when they're diagnosed, being proactive in terms of lung care...

Our doctor is a bit more proactive than most. Usually will prescribe an antibiotic based on previous cultures. We also bump up vest from 3x a day to 4 or 5.

It would be interesting if we could get someone from one of the respiratory companies to respond to this post. Years ago I'd contacted Pari specifically about the Pari Trek and received an email indicating they did not recommend it for Tobi due to the lower psi; however, that was 14 years ago...

Thanks, I figure I will have him practice this weekend. Online have read about taking a hot shower, leaning over a pot with boiling water, drinking something hot... He doesn't do hts, a couple times at the clinic when he was younger they tried it to get a sample and once he practically rumbled...

DS has never done a sputum sample because unless he has an exacerbation, he doesn't cough anything up. So he still gets a throat swab. Just got back from doing labs and they sent home a sputum sample collection kit. Told us to do it first thing in the morning; however, I'm not sure he'll have...

My first thought was a bladder infection, but one would think they'd checked for that as well.

23 & me only tests for the most common CF mutations -- I think they test for 32...? And there are over 1600 mutations for CF. So it's hard to say if you are a carrier or have a 2nd mutation without more extensive testing. Usually a sweat test is done to start the ball rolling. Even if your...

We ran into similar issues with our Pari Vios and I was thinking maybe it's outlived it's usefulness. I use disposable sidestream nebs if he's not on Tobi; however, I've found he has to sit a certain way and can't use the mask, so he can't fall back asleep. It still worked okay this weekend...

We used regular tap water at home for formula and if we travelled I either used premixed formula or bottled water. We've never used filtered water pitchers. Our child was in daycare. We figured eventually he would be going to school. Our doctor's only concern was that there was separation...

I saw a post on Facebook last night of someone trying out the Monarch vest. Indicated it cost about $19,000, was only for adults (age 15) and that this individual's clinic actually recommended this one as opposed to the afflo (sp), which they felt didn't give a good enough work out. I figure...

I'm assuming your doctor would refer you to a Cystic Fibrosis center or specialist where you'd most likely get some bloodwork and xrays done, sputum cultures to see if you're growing any common CF bugs. Maybe get prescribed some antibiotics if you are culturing something. Vitamins...

I sent an email; however, our representative has continued to support the repeal. At least I had my say, but as usual fell upon deaf ears.

Interesting article. I have a coworker dealing with pancreatitis and a doctor mentioned CF. Think he's finally been referred to a specialist after dealing with this over the past year or so.