Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hello, I hope that you don't mind my questions, but I was surprised to see that Blake was not diagnosed until he was 9 1/2 years old. Was Blake sick during the first 9 1/2 years of his life? Does his CF effect his intestines? Our grand daughter was diagnosed at 3 months old. By then, she was already extremely sick. She spent a total of two months in the hospital during her first year. Why do you think that Blake may need a tune up? Has he been sick? Thanks, Gale > My son Blake (12) has been diagnosed 2 1/2 years. He has only had > one tune up and I am really wondering if he needs another. We moved > last summer and have new Doctors. (Liked the old ones much better!) > Whenever he is sick they don't even want to see him, they just phone > in another perscription. Do the gage it mainly on PFT's? > Thanks for any feed back. > Shelia mom of Blake 12 w/cf and 3 no cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 > Hello, > > I hope that you don't mind my questions, but I was surprised to see > that Blake was not diagnosed until he was 9 1/2 years old. Was Blake > sick during the first 9 1/2 years of his life Surprisingly, 10% of the CF cases are not diagnosed until after the age of 8. My son was jut diagnosed before his 8th birthday. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 My a was diagnosed May of 2002, 2 months shy of her 9th birthday. mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > > Hello, > > > > I hope that you don't mind my questions, but I was surprised to see > > that Blake was not diagnosed until he was 9 1/2 years old. Was > Blake > > sick during the first 9 1/2 years of his life > > Surprisingly, 10% of the CF cases are not diagnosed until after the > age of 8. My son was jut diagnosed before his 8th birthday. > > jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 there is a woman I know of from another list that wasn't diagnosed until she was 54 years old! Re: When do you tune-up? My a was diagnosed May of 2002, 2 months shy of her 9th birthday. mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > > Hello, > > > > I hope that you don't mind my questions, but I was surprised to see > > that Blake was not diagnosed until he was 9 1/2 years old. Was > Blake > > sick during the first 9 1/2 years of his life > > Surprisingly, 10% of the CF cases are not diagnosed until after the > age of 8. My son was jut diagnosed before his 8th birthday. > > jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Christian was 9 1/2 before he was diagnosed; he weighed 52 pounds and still wore size 4T clothes. Tina Mom to Christian 11 yowcf and 19 yowocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Wow, I assumed that children that wern't dignosed as infants had mild cases. I see now, that is not always the case. Is Christian doing well now? Gale > Christian was 9 1/2 before he was diagnosed; he weighed 52 pounds and still > wore size 4T clothes. > > > Tina Mom to Christian 11 yowcf and 19 yowocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 > Sheila, > > When my son was younger, the only time he was put in for an actual " tune-up " was when he needed to gain weight. But then again, when he was younger, he didn't have the problems with his lungs as he does now. When did he start developing trouble with his lungs? How is he doing now? jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 It's very hard to be a parent of one with CF, I can't imagine what their lives are like. Thanks for asking how he's doing. ~ Jacki {{{HUGS}}} Jackie. There's no pain like seeing your child hurt. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Sheila, I did reply to you but did it under title misc replies dated today and also I think it said update on us. My kids with Cf are aged 4, 5 and 7, by the way. It is the 5 yo who gets tuneups every 3 months. I should say that our docs are very aggressive, and we like them alot. They guage it on pfts, symptoms, sinus symptoms (to avoid yet another sinus surgery), exercise tolerance largely reported by the school (they go to small private school), and our parental reports, or, if they hear crackles, etc in the lungs, for example. Lots of things go into that decision, but the docs now know them well enough that they want to hit them with tuneups BEFORE they are really symptomatic, they believe that way they can keep their lungs healthy for as long as possible. They will call in prescriptions if we need them, and request them, but they will also order a tuneup if we call and say that is what is needed and if it is not too soon after last tuneup (you want to be careful that you don't do them too often as ivs can damage the kidneys...). We have used cipro in the past as a stop gap measure between tuneups. They all three, of course, are on tobi, with joshua and joseph on the normal regimen of alternating months on and off, and Mallory on the new routine I mentioned in the other email. where do you live? maybe there are more aggressive docs around. OR, maybe they just need to get toknow you better. Our docs say that parents are the best reporters of how their kids are doing and what they need. I hope this helps. Jen Mommy of 7, 3 with CF > My son Blake (12) has been diagnosed 2 1/2 years. He has only had > one tune up and I am really wondering if he needs another. We moved > last summer and have new Doctors. (Liked the old ones much better!) > Whenever he is sick they don't even want to see him, they just phone > in another perscription. Do the gage it mainly on PFT's? > Thanks for any feed back. > Shelia mom of Blake 12 w/cf and 3 no cf Quote Link to comment Share on other sites More sharing options...
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