Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 , Sorry Sam is a girl even better, I apoligize judy Re: When do you tune-up? > 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 > > > > ------------------------------------------- > 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 July 5, 2003 Report Share Posted July 5, 2003 Hi , I noticed that an intern alerted you to the CF. The same thing happened to us. Zach was in the NICU because he was born 9 weeks premature with a meconium ileus and an intern asked if anyone had spoken to us about cf. We asked his neonatalogist about it and he seemed really annoyed at the intern. The doctor told us it was a long shot and his newborn screen would catch the cf if he had it. Zach's newborn screen test came back that he was normal, not cf. The test was wrong. It wasn't until Zach had stopped gaining weight that I started researching cf and demanded his pediatrician dna test him for cf. Three weeks after his cf diagnosis was confirmed my husband and I attended a speech given by Dr. Robin Deterding. The intern and the neonatalogist were both in the audience when Dr Deterding said (and I will never forget), " meconium ileus is ALWAYS treated as cf until proven otherwise. " The neonatologist walked right by us after the speech, but we tracked down the intern and in front of all of the arrogant doctors we publicly thanked her for alerting us to the cf. She was stunned and wished us the best. We just wanted her to know that what she did was right and helped us get Zach on the right path. Sorry for the windy post, but I had to let you know that you are not alone in your misdiagnosis. I understand the anger you are feeling. I am sorry it took so long for Sam. Zach was diagnosed at 13 months, so our wait was much shorter, but it doesn't do much to aleviate my anger. I am glad things are better now for Sam. Sara - mommy to Zach 17 months on Tuesday and almost walking! > Gale, > My daughter was also not diagnosed with CF until she was 11 - she was > practically dying from malnutrition and had been in and out of hospitals at > least 3 times a year since she was born. It took an intern in the middle of > the night to ask if she had ever been tested for CF and finally we knew our > enemy. I don't know why ..... we were furious. So was she. For years some > even said nothing was wrong with her. She's had horrible intestinal pains > and terribly smelly poop all the classic signs, coughing to the point they > sent her home from school every day, ect. ect. It was horrible. Things are > better knowing what we're up against now. > G > mom of sam 14 w/cf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 It gave me goose bumps to read your response. Your poor daughter and YOU! It must have been unbearable to have your child so sick, with no explanation. Now, if only they would hurry up with the cure! 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 > > > > > > > > ------------------------------------------- > > 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 July 7, 2003 Report Share Posted July 7, 2003 Ricky had meconium peritonitis at birth (born 7 weeks early and also in the NICU) and was tested almost immediately for CF by DNA testing. We were told at the time that meconium ileus/peritonitis is generally a result of CF 97% of the time! How about those odds? Yet it happens in only something like (I may be misremembering) 5% of CF patients. I'm glad our neonatologists were on the ball because we had no CF in our family and might've waited a long time for a diagnosis otherwise. Becky (mom of Ricky, 7, with CF and bipolar disorder and Andy, 5, no CF) > Hi , > I noticed that an intern alerted you to the CF. The same thing > happened to us. Zach was in the NICU because he was born 9 weeks > premature with a meconium ileus and an intern asked if anyone had > spoken to us about cf. We asked his neonatalogist about it and he > seemed really annoyed at the intern. The doctor told us it was a > long shot and his newborn screen would catch the cf if he had it. > Zach's newborn screen test came back that he was normal, not cf. > The test was wrong. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Sara, Never too late to know your not alone. It was very traumatic for us. I can image the same for you too. Thanks for sharing your experience, it does help. G mom of Sam 14 w/cf matty 10 bobby7 no cf Re: Diagnosis Age > Hi , > I noticed that an intern alerted you to the CF. The same thing > happened to us. Zach was in the NICU because he was born 9 weeks > premature with a meconium ileus and an intern asked if anyone had > spoken to us about cf. We asked his neonatalogist about it and he > seemed really annoyed at the intern. The doctor told us it was a > long shot and his newborn screen would catch the cf if he had it. > Zach's newborn screen test came back that he was normal, not cf. > The test was wrong. It wasn't until Zach had stopped gaining weight > that I started researching cf and demanded his pediatrician dna test > him for cf. Three weeks after his cf diagnosis was confirmed my > husband and I attended a speech given by Dr. Robin Deterding. The > intern and the neonatalogist were both in the audience when Dr > Deterding said (and I will never forget), " meconium ileus is ALWAYS > treated as cf until proven otherwise. " The neonatologist walked > right by us after the speech, but we tracked down the intern and in > front of all of the arrogant doctors we publicly thanked her for > alerting us to the cf. She was stunned and wished us the best. We > just wanted her to know that what she did was right and helped us > get Zach on the right path. > Sorry for the windy post, but I had to let you know that you are not > alone in your misdiagnosis. I understand the anger you are feeling. > I am sorry it took so long for Sam. Zach was diagnosed at 13 > months, so our wait was much shorter, but it doesn't do much to > aleviate my anger. I am glad things are better now for Sam. > Sara - mommy to Zach 17 months on Tuesday and almost walking! > > > > > Gale, > > My daughter was also not diagnosed with CF until she was 11 - she > was > > practically dying from malnutrition and had been in and out of > hospitals at > > least 3 times a year since she was born. It took an intern in the > middle of > > the night to ask if she had ever been tested for CF and finally we > knew our > > enemy. I don't know why ..... we were furious. So was she. For > years some > > even said nothing was wrong with her. She's had horrible > intestinal pains > > and terribly smelly poop all the classic signs, coughing to the > point they > > sent her home from school every day, ect. ect. It was horrible. > Things are > > better knowing what we're up against now. > > G > > mom of sam 14 w/cf > > > > > > > ------------------------------------------- > 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 July 12, 2003 Report Share Posted July 12, 2003 Here, Here to that Gale!@ G mom of 14 w/cf Re: Diagnosis Age > It gave me goose bumps to read your response. Your poor daughter and > YOU! It must have been unbearable to have your child so sick, with > no explanation. Now, if only they would hurry up with the cure! > > 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 > > > > > > > > > > > > ------------------------------------------- > > > 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 July 12, 2003 Report Share Posted July 12, 2003 With effrey he was in the NICU for 18 days (born at 36w5days) with respiratory distress, a spontaneous pnuemo and merconium plugs to name a few. The first visit to the Ped and he mentioned testing for cf at three months like it was no big deal and nothing to worry about. When was 2 months old he got bronchiolitis and went to see our very wonderful pulmo doc who is quite agressive. The bottom line is its all in the docs and what they are willing to tell you. Thank God for good docs. > Sara, > Never too late to know your not alone. It was very traumatic for us. I > can image the same for you too. Thanks for sharing your experience, it > does help. > G > mom of Sam 14 w/cf > matty 10 bobby7 no cf > > Re: Diagnosis Age > > > > Hi , > > I noticed that an intern alerted you to the CF. The same thing > > happened to us. Zach was in the NICU because he was born 9 weeks > > premature with a meconium ileus and an intern asked if anyone had > > spoken to us about cf. We asked his neonatalogist about it and he > > seemed really annoyed at the intern. The doctor told us it was a > > long shot and his newborn screen would catch the cf if he had it. > > Zach's newborn screen test came back that he was normal, not cf. > > The test was wrong. It wasn't until Zach had stopped gaining weight > > that I started researching cf and demanded his pediatrician dna test > > him for cf. Three weeks after his cf diagnosis was confirmed my > > husband and I attended a speech given by Dr. Robin Deterding. The > > intern and the neonatalogist were both in the audience when Dr > > Deterding said (and I will never forget), " meconium ileus is ALWAYS > > treated as cf until proven otherwise. " The neonatologist walked > > right by us after the speech, but we tracked down the intern and in > > front of all of the arrogant doctors we publicly thanked her for > > alerting us to the cf. She was stunned and wished us the best. We > > just wanted her to know that what she did was right and helped us > > get Zach on the right path. > > Sorry for the windy post, but I had to let you know that you are not > > alone in your misdiagnosis. I understand the anger you are feeling. > > I am sorry it took so long for Sam. Zach was diagnosed at 13 > > months, so our wait was much shorter, but it doesn't do much to > > aleviate my anger. I am glad things are better now for Sam. > > Sara - mommy to Zach 17 months on Tuesday and almost walking! > > > > > > > > > Gale, > > > My daughter was also not diagnosed with CF until she was 11 - she > > was > > > practically dying from malnutrition and had been in and out of > > hospitals at > > > least 3 times a year since she was born. It took an intern in the > > middle of > > > the night to ask if she had ever been tested for CF and finally we > > knew our > > > enemy. I don't know why ..... we were furious. So was she. For > > years some > > > even said nothing was wrong with her. She's had horrible > > intestinal pains > > > and terribly smelly poop all the classic signs, coughing to the > > point they > > > sent her home from school every day, ect. ect. It was horrible. > > Things are > > > better knowing what we're up against now. > > > G > > > mom of sam 14 w/cf > > > > > > > > > > > > > ------------------------------------------- > > 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 July 13, 2003 Report Share Posted July 13, 2003 Vivi outro dizendo o obvio: que foi traumatico o momento do diagnostico. ivan Re: Diagnosis Age > > > > Hi , > > I noticed that an intern alerted you to the CF. The same thing > > happened to us. Zach was in the NICU because he was born 9 weeks > > premature with a meconium ileus and an intern asked if anyone had > > spoken to us about cf. We asked his neonatalogist about it and he > > seemed really annoyed at the intern. The doctor told us it was a > > long shot and his newborn screen would catch the cf if he had it. > > Zach's newborn screen test came back that he was normal, not cf. > > The test was wrong. It wasn't until Zach had stopped gaining weight > > that I started researching cf and demanded his pediatrician dna test > > him for cf. Three weeks after his cf diagnosis was confirmed my > > husband and I attended a speech given by Dr. Robin Deterding. The > > intern and the neonatalogist were both in the audience when Dr > > Deterding said (and I will never forget), " meconium ileus is ALWAYS > > treated as cf until proven otherwise. " The neonatologist walked > > right by us after the speech, but we tracked down the intern and in > > front of all of the arrogant doctors we publicly thanked her for > > alerting us to the cf. She was stunned and wished us the best. We > > just wanted her to know that what she did was right and helped us > > get Zach on the right path. > > Sorry for the windy post, but I had to let you know that you are not > > alone in your misdiagnosis. I understand the anger you are feeling. > > I am sorry it took so long for Sam. Zach was diagnosed at 13 > > months, so our wait was much shorter, but it doesn't do much to > > aleviate my anger. I am glad things are better now for Sam. > > Sara - mommy to Zach 17 months on Tuesday and almost walking! > > > > > > > > > Gale, > > > My daughter was also not diagnosed with CF until she was 11 - she > > was > > > practically dying from malnutrition and had been in and out of > > hospitals at > > > least 3 times a year since she was born. It took an intern in the > > middle of > > > the night to ask if she had ever been tested for CF and finally we > > knew our > > > enemy. I don't know why ..... we were furious. So was she. For > > years some > > > even said nothing was wrong with her. She's had horrible > > intestinal pains > > > and terribly smelly poop all the classic signs, coughing to the > > point they > > > sent her home from school every day, ect. ect. It was horrible. > > Things are > > > better knowing what we're up against now. > > > G > > > mom of sam 14 w/cf > > > > > > > > > > > > > ------------------------------------------- > > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.