Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 In a message dated 3/27/2003 1:59:00 PM Central Standard Time, serein@... writes: > > For some reason my last message didn't post... > > I wish I could remember what I said... > > My 6-yr-old son was just diagnosed with cf last week. He has been > sick since he was five days old (failure to thrive, jaundice) and was > in ICU. at 9 months he started coughing and coughing and wheezing > and i kept telling dr after dr that i didn't think it was asthma, but > they never believed me. finally i decided i was going to figure it > out, and that's when i came across cf on the web. My son had every > symptom in the book. I got him into a pulmonologist and got a sweat > test (4 scores over 110). Now he's on creon 10, pulmozyme and > albuterol, plus cpt. this is actually a way easier regimine than the > 5 asthma meds they had him on plus otc stuff. What I'm really hoping > for is that he will start feeling better. He's been so sick for so > long. Has anyone had a child like this... pancreatic insufficient, > with lung involvement (his sputum culture came back with staph and > pseudomonas).... will he feel better? O Boy will he ever start feeling better!!! Now that you know thinks will get much better for him! Hang in there I know that first year is a real roller coaster ride. But this is a great support group. I have three daughters and 2 have CF. Where do you live? We are in Iowa! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 For some reason my last message didn't post... I wish I could remember what I said... My 6-yr-old son was just diagnosed with cf last week. He has been sick since he was five days old (failure to thrive, jaundice) and was in ICU. at 9 months he started coughing and coughing and wheezing and i kept telling dr after dr that i didn't think it was asthma, but they never believed me. finally i decided i was going to figure it out, and that's when i came across cf on the web. My son had every symptom in the book. I got him into a pulmonologist and got a sweat test (4 scores over 110). Now he's on creon 10, pulmozyme and albuterol, plus cpt. this is actually a way easier regimine than the 5 asthma meds they had him on plus otc stuff. What I'm really hoping for is that he will start feeling better. He's been so sick for so long. Has anyone had a child like this... pancreatic insufficient, with lung involvement (his sputum culture came back with staph and pseudomonas).... will he feel better? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Welcome, This is a WONDERFUL list to belong to!! I have a 6yo with cf also. He was dx when he was 9 months old. He really should start to feel better when they get all his meds squared away. Hang in there!! Take care, Deana Mom to 12 ncf and 6 wcf new here (second try) For some reason my last message didn't post... I wish I could remember what I said... My 6-yr-old son was just diagnosed with cf last week. He has been sick since he was five days old (failure to thrive, jaundice) and was in ICU. at 9 months he started coughing and coughing and wheezing and i kept telling dr after dr that i didn't think it was asthma, but they never believed me. finally i decided i was going to figure it out, and that's when i came across cf on the web. My son had every symptom in the book. I got him into a pulmonologist and got a sweat test (4 scores over 110). Now he's on creon 10, pulmozyme and albuterol, plus cpt. this is actually a way easier regimine than the 5 asthma meds they had him on plus otc stuff. What I'm really hoping for is that he will start feeling better. He's been so sick for so long. Has anyone had a child like this... pancreatic insufficient, with lung involvement (his sputum culture came back with staph and pseudomonas).... will he feel better? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 WELCOME.....I missed your name. He will feel better! My daughter was diagnosed late (6) - after going untreated for so long we saw such a difference in her after being treated properly...... I am sure you are overwhelmed by information and emotions. We are here for your! Rosemary from New York with 3 children with CF - they are 12.5, 10, 6...... I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready for this - TOBI after their medication!!! At least it wasn't albuterol or Coly... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 Welcome!!! new here (second try) > For some reason my last message didn't post... > > I wish I could remember what I said... > > My 6-yr-old son was just diagnosed with cf last week. He has been > sick since he was five days old (failure to thrive, jaundice) and was > in ICU. at 9 months he started coughing and coughing and wheezing > and i kept telling dr after dr that i didn't think it was asthma, but > they never believed me. finally i decided i was going to figure it > out, and that's when i came across cf on the web. My son had every > symptom in the book. I got him into a pulmonologist and got a sweat > test (4 scores over 110). Now he's on creon 10, pulmozyme and > albuterol, plus cpt. this is actually a way easier regimine than the > 5 asthma meds they had him on plus otc stuff. What I'm really hoping > for is that he will start feeling better. He's been so sick for so > long. Has anyone had a child like this... pancreatic insufficient, > with lung involvement (his sputum culture came back with staph and > pseudomonas).... will he feel better? > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 This is horrible. To go undiagnosed even with only a few symptoms is ridiculous, but to have all of the typical symptoms and not be referred for a sweat test for 6 years! I am furious! This is why I feel it is so important to include pediatricians in our awareness campaign! I feel so bad for you and your family, but I am so happy you are here with us. Do you have a CF Clinic to visit? Where do you live? I am so sorry this happened to you. Thank goodness you took matters into your hands. Best to you! Lenora in Colorado > > For some reason my last message didn't post... >> >> I wish I could remember what I said... >> >> My 6-yr-old son was just diagnosed with cf last week. He has been >> sick since he was five days old (failure to thrive, jaundice) and was >> in ICU. at 9 months he started coughing and coughing and wheezing >> and i kept telling dr after dr that i didn't think it was asthma, but >> they never believed me. finally i decided i was going to figure it >> out, and that's when i came across cf on the web. My son had every >> symptom in the book. I got him into a pulmonologist and got a sweat >> test (4 scores over 110). Now he's on creon 10, pulmozyme and >> albuterol, plus cpt. this is actually a way easier regimine than the >> 5 asthma meds they had him on plus otc stuff. What I'm really hoping >> for is that he will start feeling better. He's been so sick for so >> long. Has anyone had a child like this... pancreatic insufficient, >> with lung involvement (his sputum culture came back with staph and >> pseudomonas).... will he feel better? >> >> >> >> >> ------------------------------------------- >> The opinions and information exchanged on this list should IN NO WAY >> be construed as medical advice. >> >> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. >> >> ------------------------------------ >> >> >> Quote Link to comment Share on other sites More sharing options...
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