Well due to overwhelming demand thru surveys, phone calls, e-mails, letters and kayleesgrandma
...I might start a blog. This will be a huge undertaking for me as I hardly find time to post something on our family website. I guess I will designate some time between classes to get it done.
Ok as to the couple of questions asked, well lets take them one at a time.
<UL>First off, it's cool to see that someone else has the same mutation as our son. The only thing I was ever able to see on the 1717G---A was that if it was paired with the F508 that most cases the lung problems would not be very bad, but the enzyme thing would be about normal for what CF patient would need. So good news so far. YEA! (found that info. on a website called sick kids or something like that.)</UL>
<UL>John is 1.5 years old and my wife and I tried to give him the capsules whole but I found that it doesn't work as well. So I brought together an emergency session of congress which consists of me. I passed that law of no whole capsules and brought it to the president which is my wife. luckily she didn't veto and now we continue to administer his enzymes with applesauce. </UL>
<UL>As for John taking them. He is used to it. Most fits he throws is when he wants food. He gobbles down the enzymes with applesauce and loves it.</UL>
<UL>Kayleesgrandma, as to your question, our doctor relies more on our judgment than his own. Well our first CF doctor did. We just took that same attitude and put in on our new one. (which is great) We really keep tabs on how his diapers look. Too liquid and runny we up them. Too solid we trim them down. Every time we have had to up the enzymes it has been because we called up the nurse and let her know what we were doing and make sure they didn't have objections. In the end it came to the fact that we were with John every day and the doctor saw him every 3 months.</UL>
<UL>Well that's all I think I needed to reply to. If you have ANY other questions feel free to ask me. I may not be as knowledgeable as many here on the forums but anything I do know or experience is yours to take. Also I am sorry that my posts keep squishing together in a huge mass clump. They really do look good on my screen when I press the button to post it. <img src="i/expressions/face-icon-small-smile.gif" border="0"></UL>
<UL>Brad</UL>
<UL>(I had to edit my message, for some reason my computer at home did it right! I will try reposting the above one. YEA!!!)</UL>
