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Also remember that there are actually people with CF in their 60's and 70's. I am thinking of 2 in particular from the CFparents list. So an "average lifespan" for people with CF can really be misleading.

Hi,I don't know how to answer your question but I will need to give the same info to my daughter some day. If you want to hear how some other parents have handled it you could try the CFparents list athttp://groups.yahoo.com/groups/cfparents more for parents/grandparents or the CF2chat...

We recieved our MedPulse vest today! Wednesday a trainer will come out to show us how to use it. Rachel has already had it on and she really likes it!<img src="i/expressions/face-icon-small-cool.gif" border="0"> We can't wait to get started!Andrea

Just let him take them the way he was used to doing it before. Not many 5 year olds will swallow pills (at least the non-CF variety) He has to do enough things that other kids don't have to do. Why the push to swallow them whole? Some kids are willing to try it and some aren't. Eventually...

Hi FM,My four year old daughter was diagnosed at 8 &1/2 months. We had a rough time at the start but She has been well for the last 2 years. If you want to read her story and learn a tiny bit about CF you can visit our site at http://groups.msn.com/TeamRachelJane there are also good links to a...

Have you tried to use the bathroom before you do CPT? I always ask my daughter to try first because we always get halfway through and she needs to go. The coughing makes many waek bladders drip a bit.Andrea

Forgot to say they can't co in the milk because they will start to digest the milk before it gets into the stomach (also it would taste nasty)

Try a different fruit. besides applesauce, many I have used both babyfoor pears and peaches. My daughter (4 w/CF) still won't swallow them so she gets them in her peaches.Andrea

That hand sanitizer is great especially if you handle money a lot. People don't realize how dirty that stuff is. If you spend a day at a cash register you quickly realize how dirty money is just by how dirty your hands get. (no to mention the strange places people keep it-in their bra, in...

Hi MurgieHave you read any of the kids CF books with your son? It may help him to know that this is something that other kids have and deal with. If he doesn't know anyone else with CF he may be feeling like the odd kid out. "Mallory's sixty five roses" is good so is "taking Cystic Fibrosis...

Hi,My daughter is four and has been hospitalized 4 times in her first 2 years for infections. She has had a picc line inserted every time. (actually she's had eight lines in ) The only real reason that we agreed to have it done was that her lines were blowing up to 3 times a day. Most of the...

Hi,Rachel "blows' her lines quick but we never had a problem with the picc once it was placed (except for her pulling it out she has had 7 picc lines for 4 flare ups, now they stitch it in.) That has got to be hard to be so far away from your hospital and clinic. We are about 30 min away from...

Hi Murgie,Many people don't know what mutations their kids have. i only found out because my sister in law needs to be tested to find out if she is a carrier. Some docs really focus on what mutations people have and some don't. My daughter's docs focus on her individual case rather than what...

Hi,My daughter is four with CF. She hasn't needed to be hospitalized or get IV meds in a while (over 2 yrs) but we have done both. Her first time she needed them we stayed in the hospital for 14 days on IV meds and came home on an oral antibiotic. The other 3 times that she was in for...

If you apply for SSI through social security, apply for medical assistance at the same time through the assistance office. Let them know that you have a case pending with SSI, too. It took a long time for SSI to finally go through for us and all the while we were paying co-pays and paying for...

I'm still looking for<i> any</i> mention of CF in our local papaer, magazines or on TV or radio...........Andrea

I hope all goes well. When do your results on the 85 study come back? The nurse at our CF center told me that they test automaticly for 88 mutations when someone has either a positive or mixed sweat test. I guess all the CF centers may do this differently. She also said that even when they...

I did actually suggest this in one of my many e-mails to Oprah. The thing is, Many many people of African American descent are misdiagnosed due to people thinking that they just don't really get CF. Yes it is most common among those of NW Euro descent but people of other background do get CF...

Thanks,for the defense. Yes I am trying to get attention for all of those with CF(even those of you who don't care for Oprah) The point is to get the word out, and people watch Oprah. I am not e-mailing Jerry Springer or looking for sympathy. Oprah has donated money to a lot of organizations...

Hi, I am trying to get people to e-mail Oprah Winfrey and ask for a show about CF. I have aske people on other boards and I am hoping thatwe can all sort of come together and get our voices heard. Just e-mail Oprah and tell her your story, about your life and about CF. Tell her how many meds...