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Oh, and another note... with Creon cares (and maybe the other enzymes), you get to choose one free formula or dietary supplement a month. If you're using formula, they offer 4 cans of Similac Advance a month for free. And if you're not, you're eventually going to probably use Pediasure and they...

Illinois isn't great with help, but buying the Creon, pulmozyme, and vitamins are the most important at this stage for CF, and for the first two years, you can get all of it for $30/month. (Pulmozyme's copay help goes longer than 2 years, and I've heard that Creon sometimes offers to go longer...

We don't pay anything for Creon (enzymes) right now, because there is a co-pay assistance program for the first couple of years. (After that, we'll pay $30/month.) Creon isn't the only enzyme with a program. Ask your clinic to get you enrolled. You get co-pay coverage for the first couple of...

At that age, our mornings including two puffs of albuterol, 15-20 minutes of nebulized pulmozyme, and 20-25 minutes of CPT (6 positions, 20 spots to pound for a minute each.) In the evenings, it was a repeat of the albuterol and CPT. (As a side note, our clinic said we only had to do CPT once...

Have you asked if you can just up the Vitamin D instead of all of the vitamins? (We had trouble upping the CF vitamins because one of his vitamins was too low while a different one (Vitamin E) was off-the-charts too high.) There's a liquid vitamin (used for breastfed babies usually, but you...

My 15-month-old has cultured something called Enterobacter Aerogenes off and on for the last several months. The clinic gives him antibiotics (Bactrim, ugh) only when he has symptoms (i.e., coughing since his baseline is no coughs), but doesn't seem to be all that concerned about this bacteria...

Gibson75 - Is your son being seen at an accredited CF center? (Here's the list from the CF Foundation: http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/.) If not, he should be seen there. Hospitals that don't have accredited CF centers don't always do sweat tests properly or know...

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I think we'll have to ask about it at our appt. tomorrow. He only nebulizes pulmozyme right now. (He's 12-months-old.) Thanks! Erin

Along this line, can anyone tell me how long it's supposed to take for Pulmozyme? It's taking us 20 minutes before we run out of liquid in the cup. I thought it was supposed to be about 10 minutes, but when I called the company for service, they said they didn't know how long it should take. Our...

I was in your position one year ago. Our newborn son was diagnosed when he was 12-days-old... June 28, 2011. For us, our biggest problems have been with his digestive system and weight gain so far. So, if I had known, I would have pushed for a stronger laxative to keep him more regular (since...

At first, we used his bouncer to sit him in, but that was really painful on our backs So, we decided to try his baby swing and rock him in it while using the nebulizer. It works great, and now he just turned one yesterday and most days he holds the mask on by himself!

@Aboveallislove-- Thank you for your response. There are definitely some GI issues involved, and we actually think that's what started this whole thing. (He needed an NG tube about 5 months ago to clear a blockage, and he started giving us trouble eating right after that, although this is the...

I have a baby who is 11-months-old (almost 1-year-old) who was diagnosed when he was 12 days old and was started on enzymes immediately. Up until the last two weeks, he would take is enzymes like a chance... 4 Creon 6000 opened up and sprinkled on applesauce. Now, for the last two weeks, it's...

We add duocal (8g) and MCT oil (1.5 tsp) to each of our 11-month-old's bottles (4 bottles of expressed breast milk per day, totaling around 30 oz) and we add olive oil and butter to all of his baby food. I mix in 1 tsp of either into 1-1.5 oz of baby food. (He won't eat table foods... has...

We add duocal (8g) and MCT oil (1.5 tsp) to each of our 11-month-old's bottles (4 bottles of expressed breast milk per day, totaling around 30 oz) and we add olive oil and butter to all of his baby food. I mix in 1 tsp of either into 1-1.5 oz of baby food. (He won't eat table foods... has...

I did some research on prices of MCT oil, and I found a place that sells the exact same oil that we paid $93 for last month for $53 (and if you buy 2 bottles, you get free shipping). It's supposed to be better than straight coconut oil because they remove the low- and high-chain triglycerides...

I did some research on prices of MCT oil, and I found a place that sells the exact same oil that we paid $93 for last month for $53 (and if you buy 2 bottles, you get free shipping). It's supposed to be better than straight coconut oil because they remove the low- and high-chain triglycerides...

Our 10-month-old has trouble with baby forumla being added to his bottles (of breast milk). It causes severe constipation. So, to get extra calories, we started adding MCT Oil to his bottles after he lost weight before his last clinic appointment. It's a little on the pricey side (we pay $93 for...

Our 10-month-old has trouble with baby forumla being added to his bottles (of breast milk). It causes severe constipation. So, to get extra calories, we started adding MCT Oil to his bottles after he lost weight before his last clinic appointment. It's a little on the pricey side (we pay $93 for...