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I love using our Avent steamer so I ran a test on ours. I have always used more distilled water than the recommended 90 ml for bottle sterilization because I figured it would be better to steam it for longer. I ended up using 160 ml. It was difficult to get temps because it would immediately...

http://mvwnutritionals.com We get free vitamins through the Creon program. When they stopped making the Source CF they sent us the AquADEK's instead. We just received a shipment that has a new brand... Complete Formulation soft gels. I posted the link above. We have not started to use them yet...

Bummer. I know my daughter would have trouble with that type of machine. She stands up to do PFTs and gradually bends forward as she blows. I don't think she would be able to get as much air out if she had to stand still. I hope our clinic doesn't change to this kind of machine. And I would be...

The dosage is twice a day. It is not a "cure" and the improvements made will only remain as long as the drug is in your system. So if you stop taking it, your CF symptoms will return to pre drug conditions. But, the potential is amazing. We are currently trying to get my daughter enrolled in...

My daughter was 8 before she was diagnosed, so she was treated as "normal" until then and we try to keep that mentality. She has cultured staph since diagnosis; she just turned 16. We haven't really restricted her from any activities (that we wouldn't keep her "healthy" sister from doing). She...

You're worried that it might do damage to your lungs, yet you still plan on using it? Sounds like the beginning of a mental addiction. Once a week usage might not cause physical addiction, but mental addiction is different. Anyway, I am no expert on addiction, but that was the first thing I...

I wish I could find the article I read about this so I could refer you to it. But I believe they will still maintain 2 separate lists, but now there is an appeals process in order to get a child put on the adult list. But I also think there was to be another hearing about the matter, so that...

Wow, I didn't know that people still used IVs (instead of PICC or port) for antibiotic courses. My daughter has been on IV antibiotics only twice, and both times she was admitted to the hospital and had an IV for a couple days waiting for the PICC to be placed. I thought it was pretty much...

Sorry, that really sucks. Did your work say it was because of the restrictions? or did they give another reason? I am not really that familiar with employment laws, but it may be worth a call to that lawyer that deals with CF issues to see if you have any kind of case.

My daughter struggles with staph (not MRSA). Last year she started month on, month off of inhaled vancomycin as maintenance. (It is the injectable form of vanco that we mix at home then administer via neb.) From what I understand it is not commonly used, but may be worth talking to your doctor...

http://www.prematurity.org/shops/shop-mytinyhands.html I've heard of people using something like this. A sign that asks to wash hands before touching baby.

Our daughter grew that way as well. Height, then gained weight to fill out again. As long as her weight didn't drop, and it was just the increase in height that lowered her BMI, then no one seemed too concerned.

Are you going to neb the vanco? If that is what you are talking about my daughter has been doing vanco nebs for almost a year, every other month. She hasn't experienced any negative side effects from it. But she normally handles meds very well. Best of luck, I hope it works for you.

What I am hearing is that your son has 2 mutations, but that it is unknown whether or not his second mutation is disease causing. But it is clear that your son does have symptoms that can be attributed to CF. If I was in your situation I would ask that my child be treated as if he has CF... do...

Bill, Glad to see you agree with me. Teri

I don't know how common it is, but my daughter has the same problem. I don't know if it CF itself that may cause it, or the meds that they are on but is is very frustrating. She gets a lecture from the dentist every time about brushing... and she does brush twice a day. She is 15 and has never...

Glad to see you are trying to remain positive and hopeful. I would be interested to know how the lab determines that there is an "unknown" mutation. I could understand if your baby was already diagnosed with CF based on sweat test and symptoms. But you just have a high IRT which does produced...

This is just a guess on my part but I wouldn't worry too much about the deltaF508/normal vs deltaF508/unknown at this point. It could be just different designations from different companies that run the test. Or even since he just had DNA screening the 2nd mutation is "unknown"... don't know if...

Every camp is probably run differently so you should find out from the camp how they administer medication. My daughter went to a winter camp last month that was very strict in how it was handled. The students were not allowed to have any prescription / over the counter drugs (with a few...

My daughter was 8 when diagnosed, so I don't have personal experience giving a 1 year old enzymes. But, I have heard of people using chocolate sauce, jelly, or honey when there little ones were refusing the enzymes. I also heard of ketchup (yuck), but whatever your child likes and might see as a...