Emily,I am always willing to answer ANY type of question. Feel free to email me. My name is actually Melissa & my email address is rksmith@catskill.netI believe I use to communicate with your Mom awhile back. I cant remember her name, but I remember a lady having a daughter with your name & at that time were planning a graduation party. I hope to hear from you soon.
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What to tell my CF kids
- Thread starter anonymous
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I just scaned the response on here so if I missed something I am sorry. However, to put in my two cents reflecting on my growing up and the changes that have occured since. When I was diagnose at 9 months my parent were told I would probaly now see 13 because of my CF, when I was 2 my dad didn't think I was doing to see 3 because he was sure mom was going to kill me over my terrible 2's! <img src="i/expressions/face-icon-small-wink.gif" border="0">But seriously, I do not think the issue of "life expectany" should be address with young children. I feel they should be told that CF affects everyone diffrently. That it does make some really sick and they can die and others are not relly affected, yet the majority of CFer fall inbetween. This is also a great time to stress that doing their treatments and taking their medicne makes a big difference in how "bad" CF is. I would even tell them that back before they had all these new medicine that many CFer did not live to be very old. However, I would stress that it was "many" years ago. The main thing is you want them to be aware of reality; however you do not want to scare them. I was always told that the way I took care of myself was the most import factor of how CF affect me and that it was very important for me to take very good care of myself so that I would be one of the ones that got to see CF cured. I was very much aware of the deadlyness of the CF. And this is very important if your kids are around any other CF patients. Becuase if anything was to happen with someone they know with CF it is atlot easier to explain before than after.As far as medical goes, kids don't have to know the details of why they just need the basics. CF cause the thick mmucus in their lings, they need to do treatments to get it out. They need to take medice to kill germs, Take enzyme to help your body use your food so they can grow up to be big and strong. As they get older you can go in to more detail as they are mature enough to handle it. Change are as they grow older they will find out alot on their own. And the more that you have been open and honest in a reasonable way they can understand, the better they will handle things as they get older.