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I have friends whose kids are limited to x number of enzymes per day despite what they eat. We've always just based ds' enzymes based on input and output. If he eats something much higher in fat, such as pizza or theatre popcorn, we've been told by his doctor to increase # of enzymes. As for...

A lot of times, teeny tiny infants have difficulty producing adequate sweat for a sweat test. DS had one at 3 weeks and it ended up being normal despite genetic testing shoring ddf508. I recall his doctor at the time saying, I don't know why the hospital insisted on doing a sweat test, as we...

While my child was diagnosed shortly after birth due to meconium ileus/bowel obstruction, we had no family history of CF and both sides have genealogy records which go back hundreds of years. Hopefully you'll get some answers soon and the doctors can treat the symptoms. Meanwhile, due to your...

I believe Devilbiss makes one as well. Not sure on sound though. looked like a beast. Pari probably makes one as well for hospital use. Have you done an online search of 50 psi nebulizers?

We have a mobilaire, which I found online and paid out of pocket about $220. You can adjust the psi as per the drug mfg recommendations -- faster for pulmozyme to get smaller particles, shorter treatments. Reduce for tobi -- I believe the rec is 26 psi (can't remember); however, if you...

I think the biggy is making sure any equipment you take along -- nebulizer or vest that you have the proper inverter or converters to meet the varied voltage/electrical requirements.

Noexcuses, who used to be on this site has traveled extensively (Japan, Europe...) and blogged about it. http://noexcusesnoexcuses.blogspot.com/

DH attended a cff mtg yesterday and most of the individuals reported their family members had shown improvement. There were some who had initial breathing issues. One in particular indicated their teenage son, who was looking at a feeding tube due to weight loss, had grown significantly since...

DS usual spot on the bed either watching tv and/or with an ipad or laptop. Or in the family room on the couch or at the computer desk playing computer games or sometimes he plays xbox (Kinect) and is jumping around play video games. Just depends on what he feels like doing to pass the time...

Did you get your original vest from the vest (Hill-Rom) company? Have you contacted them about exchanging the vest for a newer model? Couple years ago a friend of mine was able to exchange his 80 pound vest machine with a 104 or 105. Also, the any of the vest companies will work with you and...

If he's like my son, he probably doesn't like the premixed beverages on the market and we've tried them all -- boost, pediasure, ensure, Carnation Instant Breakfast VHC... They're too thick and they "taste funny". We have been able to get ds to drink an ensure "juice" provided it's ice cold...

When DS was a baby and had constipation issues, his doctor said "one's first response is to reduce enzymes; however, that's not the case". Went on to talk about meconium equivalent and the mucus, crud that can cause those types of issues and steps to resolve them -- miralax, mucomyst...

DH and I were talking about this the other day. Other than the weird stools the first week or so and thinking he doesn't taste as salty, we really haven't noticed anything. He has grown two inches since his doctor's appointment in June and gained some weight. He hasn't weighed himself...

Could be you child is one of the lucky ones who doesn't have sinus issues. DS' buggers were just so thick, they wouldn't come out unless pulled or rinsed out. Consistency and color was like rubber cement, yellow and yellowish green. So most likely his nose wouldn't drain and stuff just sorta...

The variety of symptoms just amongst the DD F508s is interesting. Friend of mine's son has had several sinus surgeries due to polyps, obstruction... Several of them, my child included have had to have speech therapy. Not sure if it's cf related, but ds had issues with his f's s's, etc...

Someone here mentioned 20 grams of fat, but I couldn't find a specific number either. The pharmacist who called to go over the info once we were approved just mentioned whole milk, cheese, nuts... DS always has a glass of carnation instant breakfast made with whole milk and cream with his...

I guess I'd push on the basis that she's got all that junk she has to spit out each day and indicate something isn't right with her and you'd like to get to the bottom of it. CF or not, something is going on with her. Also, if she can hack up a good sample, ask them to run a culture on it to...

Ds' vest just stopped, had a message 7 call for service. Unplugged and restarted. Anyone have this message before. Course it's after hours, on a weekend and I'm at the family lake cabin.

I believe some clinics are more proactive than others. Our previous cf clinic stressed only cpt/vesting and nebs if there were symptoms. Our current cf doctor stresses minimum twice a day, more is better. We do three. And despite ds' symptoms primarily being digestive with no cough, CT and...

CPT is basically cupping hands and beating the "snot out of them" on different portions of the back, sides and chest.