28 June 2010

What We've Learned So Far - Tip #2: Become An Expert

Sometimes knowledge is power...sometimes knowledge is scary/painful (particularly when that knowledge is acquired from the internet).  However, we have found that learning as much as we can about CF and CF-related topics has empowered us to deal with Bennett's disease.

Becoming experts on our son's condition, we been able to make more informed decisions and ask appropriate questions to our doctors and nurses.  It has also helped us to explain how the disease works to others.

Here are the ways we have found have made us "experts" of Bennett's disease:
1.) Buying informative books (such as "Cystic Fibrosis: A Guide for Patient and Family" by David M. Orenstein)

2.) Connecting with other families with children with special needs - in person, through blogs and on Facebook.

3.) Visiting informative and helpful websites regularly (i.e.,

4.) Utilizing Google Alerts for words like "Cystic Fibrosis" and our son's mutated gene "621+1G->T".  This allows us to get instant information about CF or Bennett's gene mutation when new article, study or blog is updated or published.

5.) Asking lots of questions to Bennett's medical providers when a new treatment, test or new medication is prescribed.  We ask lots of questions until we feel satisfied we fully understand the reason behind the new treatment, test or medication.  And them we often google more information so we can better grasp how this fits into the overall care of Bennett's disease.

6.) Trusting our intuition and our child's intuition 

1 comment :

  1. I have an 8 year old son with CF. He was relatively healthy as an infant/toddler with no major issues. As he gets older and we run into different issues, I would have to say that "documentation" or "personal notes" is what helps me the most.

    As you start getting into all these different meds it gets harder to remember what he was on, when he was on it, why he was on it, for how long, side effects, etc. Even a general note on sicknesses is a great thing to have. You never know when you'll need to "connect-the-dots" to figure out what's going on.

    We're doing home IV's right now and we've had to go down on our Vancomycin dose 2 times because Ty's levels were too high. I'll make a note of the level we stabilized at so that next time we'll have a baseline.

    I also personally document FEV levels (lung function levels once Bennett is old enough), height and weight at every clinic visit.

    As much as we love and trust our CF team, always remember that you are the greatest line of defense in making sure that the doctors stay on their toes. You do this with your own documentation.


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