Hi Jen,
<br />Congratulations on the birth of your new baby. And you have come to the right place for ideas for a disease that doesn't have any hard and fast rules for treatment. You will see many approaches and will ultimately have to decide what makes sense to you.
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<br />I have been at every end of the spectrum with this disease. I started out asymptomatic until 21, and progressed to a stage of severe lung involvement which involved increasing use of IV meds, severely declining lung function, culturing multiple bacterias, resistance to most antibiotics -- well, you get the picture.
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<br />But here's the interesting part. My decline came under the care at top medical centers and top doctors. The course of my disease changed twelve years ago when I found a doctor who had a very original way of thinking. And I have not been on IV meds in twelve years, my last 3 cultures are picking up nothing, after ALWAYS having Pseudomonas -- which is really unbelievable, and my lung function has gone steadily up.
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<br />Because of my experience, I do believe that it is possible to help preserve lung function by 2 ways. One, by having a doctor who is open minded and recognizes the role that environment plays in contributing to inflammation in both the body and lungs, which can cause exacerbations and also ultimately be a breeding ground for infection. And a doctor who treats the asthma/allergy/chemical sensitivity component to CF. And two, cleaning up your home environment allergy-wise, because the air a CF'er breathes DOES matter.
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<br />Babies that are born with Cystic Fibrosis start out with normal lungs. But then constant inflammation and infections start to damage them. The good news? There is so much you can do preventatively. It is very hard to explain everything to you in one post, so I will refer you to some threads to read.
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<br />When I was at my doctor today, we were both amazed at the fact that I was just really sick for over 2 weeks with the usual bronchitis symptoms and I recovered without a single antibiotic. In fact she told that all winter she had only one patient on antibiotics at all. She treats the inflammation before infection has a chance to settle in.
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<br />My doctor was telling me there has been little research on CF and the environment. But she found a very interesting study that is the first to show the connection between CF, genes, and the environment. The Johns Hopkins study showed how second hand smoke damages lungs in CF patients who have exhibit a certain gene -- which also shows that a GENETIC disease can be triggered and made worse by the environment. So if smoke can do this, what else can damage lungs?
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<br />Excerpted from the article:
<br />Researchers at Johns Hopkins have discovered the first genetic evidence that secondhand smoke can worsen lung disease. The report in this week's Journal of the American Medical Association describes one gene variation that can weaken lung function as well as shorten the lifespan of those affected by cystic fibrosis and also are exposed to secondhand smoke.
<br />"We're really surprised that such a small genetic change can double the negative effects of secondhand smoke on lung function in these patients," says Garry Cutting, M.D., a professor of pediatrics and medicine and member of the McKusick-Nathans Institute of Genetic Medicine. "It's always been suspected that secondhand smoke is detrimental to lung disease patients, and now we have a handle on one specific gene that clearly makes it worse for those with CF."
<br />Of the 812 participants in the study, 188 were exposed to secondhand smoke at home. The participants were recruited between 2000 and 2006 as part of the U.S. Cystic Fibrosis Twin and Sibling Study and the Cystic Fibrosis Foundation Data Registry.
<br />The research team found that secondhand smoke exposure was associated with decreased lung function in CF patients, measured by how much air a person could breathe out in the first second of expiration. According to Cutting, any secondhand smoke exposure reduced lung function by 10 percent.
<br />"We know by observation that some patients tend to do worse than others, so we wondered if genes played a clear role in how CF patients react to secondhand smoke," says Cutting.
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<br />So Jen, I would say if you want to protect your babies lungs, start by tossing all products that have chemicals and fragrances, buy an air filter, a hepa/charcoal filter vaccum, encase the baby's mattress, remove carpet, drive with the windows up and the recycle air button on, try not to have furniture that has formaldehyde, and when the baby can eat solid food (organic if possible), stay away from chemicals, preservatives and things like high fructose corn syrup. This just a start.
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<br />There are other things areas also such as supplements like probiotics that you should ask your doctor about. I know a lot of people here can tell you about probiotics that are suitable for babies.
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<br />Since I don't have a blog, the best that I can do is refer you to threads where I have posted some of the things that I do. Even though you have an infant, hopefully you can glean ideas that will be helpful to you in the long run. If you need more help, I'm here.
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<br /><a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=39912
">http://forums.cysticfibrosis.c...atid=6&threadid=39912
</a><br /><a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=42322">http://forums.cysticfibrosis.c...catid=5&threadid=42322</a>
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinsmedicine.org/Press_releases/2008/01_29b_08.html">http://www.hopkinsmedicine.org...es/2008/01_29b_08.html</a>
