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I think it's a reformulation of Pancreacarb.

DS (age 12) has gained a few pounds since he started the end of July and has grown several inches. Checked shortly after he started regarding "aquagenetic" wrinkling and didn't notice an improvement at the time. Will have to check again now that he's been on it for awhile. He wasn't...

I think there were a couple individuals who've had three mutations. Hopefully your grandson is going to an accredited cf clinic and is being treated accordingly for those symptoms.

Is the cough a recent event? Being that you're pregnant could you have issues with reflux?

To simplify things... You're the customer, you're paying for these appointments to be told you're over reacting. Ask for testing, if the doctor refuses, the tell him you'd like that written in the file that parent requested culture, certain tests and he refused because.... Basic fact of the...

It's nice to have an adjustable neb as I believe Tobi requires less of a psi and pulmozyme requires a greater one -- particle size and all that jazz in order to get the drug deeper into the lungs. And if one uses too high of a psi the hoses pop off and scare the heck out of us. :) Interested...

We have a Devilbiss Pulmo Aide that we use as a spare at my inlaws house that is fairly old (1992-93) that we got from a cousin. Still works like a dream. Before getting the 50psi compressor we used Devilbiss Pulmoaide compressors for our everyday machine. Only issue was with their warranty...

Due to potential cross contamination issues and my concerns with how well salt rooms are kept clean, I'm pretty apprehensive about it. There is a CF treatment which involves nebulizing hypertonic saline. Also regular saline sinus rinses do wonders for breaking down the crud in ones nasal passages.

Thanks for the updates. We really haven't noticed anything major with ds, whose been on it since the end of July; however, looking back, it did seem as if he had a bit of a head cold at first. He's gained some weight and he seems to breathe much easier thru his nose. Noticeable more when he...

Obamacare isn't an insurance provider, but allows individuals access to insurance. Are you or will you be working and get insurance that way or will you be looking at medical assistance programs? If you're going to be paying for your own insurance you could check out their formulary drug...

Just wondering with your headache and feeling of pressure if it might help to do sinus rinses to help get the crud out. DS rarely coughs, but does have more sinus issues and I know he said he got some nuggets from his nose after starting orkambi, which he was thrilled about (grossness factor)...

Due to the weight loss, have they done a fecal fat test to determine pancreatic insufficiency. Also have they run cultures on her sputum to see if she cultures any typical cf bugs such as pseudomonas or steno. maltophilia. I'd also like to add, based on personal experience, just because sweat...

For the most part we've tried to have about 10-12 hours between doses. DS has his breakfast around 7:30 and then has supper around 6-6:30. Weekends if he sleeps in 8 or 9, I try have a late supper. If he's been snacking all day and isn't all that interested in supper, then I'll try to give it...

No, I'm in a different state. I ended up having to go thru the Vertex assistance program and they did the legwork. Ended up with a $15 copay, but initially our insurance indicated we'd have to come up with half the cost as they considered it nonformulary.

I wonder if you couldn't go onto the website for the major insurance companies in your state and see if Orkambi has been added to their formulary drug listing. I check the website for ds' insurance prior to getting a script and was surprised it was listed as a specialty drug. That's not to say...

I struggled with this a lot when ds was a baby and we were getting used to a routine. The unfairness of it all. Once in awhile it still hits home, but for the most part we've got our schedule down, got things figured out. I'm sure as we end up having to add more meds or treatments, ivs in the...

We've always used reusable pari LC neb cups for pulmozyme, tobi, as well as every day albuterol and atrovent. When traveling, we've used disposable Sidestream nebulizers for pulmozyme and albuterol/atrovent, but don't think they're suggested for Tobi. Pari makes a disposable pari LC; however...

Generic is Ipratropium bromide. We mix it with albuterol (name brand of that mixture is duo-neb). While albuterol is a faster acting bronchodilator, atrovent is longer lasting. As for adding a third xopenex -- we've always done a bronchodilator when doing cpt or vesting. It's my...

We've always done albuterol and atrovent combined to open up the airways -- 3 times a day, more if exacerbations. Atrovent is a more longer lasting one. Other reason is when using tobi, helps to get the med deeper in the lungs AND if there are issues with bronchiospasms when using a harsher...

When ds was a baby and we poured the contents of the capsules onto a spoonful of baby bananas (or syrup, jelly, fruit, ketchup) we gave them to him all at once because we needed to make sure the beads were rinsed down and didn't stay in his mouth. Now that he's older and takes capsules whole...