Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Paige, I have a question. when my son was diagnosed. They tested my husband and I just to see what mutations we had. Why can't your clinic do that for you? And that way you could find out if you do indeed have CF or not. I will pray for you. Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 8, 2002 Report Share Posted November 8, 2002 Paige, I have a question. when my son was diagnosed. They tested my husband and I just to see what mutations we had. Why can't your clinic do that for you? And that way you could find out if you do indeed have CF or not. I will pray for you. Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 8, 2002 Report Share Posted November 8, 2002 Paige, I have a question. when my son was diagnosed. They tested my husband and I just to see what mutations we had. Why can't your clinic do that for you? And that way you could find out if you do indeed have CF or not. I will pray for you. Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 9, 2002 Report Share Posted November 9, 2002 Yes, my daughter was dx'd last month, and they tested myself and my husband to see which mutations we had. It was up to us to have it done, since they were doing one on our daughter already, and didn't need to know ours to figure out hers. I called our insurance company, and they covered it (although, frankly, I'd have done it anyway, as soon as I scraped up the $265 each for my husband and I, just to know.) We're still waiting on the results (takes 3 weeks where we're at to get results back, and they drew the blood near the end of our hospital visit.) Another thing you might want to consider about your symptoms is that you're having " carrier symptoms " . I've come across some information on studies that were done on carriers, and how a good percentage (think it was wandering around the 60% range...I saw this info like over a month ago) have some CF symptoms, even without actually having CF. As my best friend said, nothing is ever completely an on/off switch in genetics. I know that I certainly have respiratory issues (had a 4-day asthma attack over the weekend/beginning of the week. Also had chronic respiratory infections every couple of months or so all my life, which have thankfully decreased immensely since my tonsillectomy earlier this year.) Here's a link to some of the info: http://personal.nbnet.nb.ca/normap/CFcarriersymptoms.htm They really should do more research on this stuff, because there isn't a whole lot of info on it, and some of it is contradictory. Anyhow, all that long-winded stuff basically boils down to: get yourself tested if you can, just to see, and if it comes up positive you'll know, and if it comes up negative, then you know to look elsewhere for the cause. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 9, 2002 Report Share Posted November 9, 2002 Yes, my daughter was dx'd last month, and they tested myself and my husband to see which mutations we had. It was up to us to have it done, since they were doing one on our daughter already, and didn't need to know ours to figure out hers. I called our insurance company, and they covered it (although, frankly, I'd have done it anyway, as soon as I scraped up the $265 each for my husband and I, just to know.) We're still waiting on the results (takes 3 weeks where we're at to get results back, and they drew the blood near the end of our hospital visit.) Another thing you might want to consider about your symptoms is that you're having " carrier symptoms " . I've come across some information on studies that were done on carriers, and how a good percentage (think it was wandering around the 60% range...I saw this info like over a month ago) have some CF symptoms, even without actually having CF. As my best friend said, nothing is ever completely an on/off switch in genetics. I know that I certainly have respiratory issues (had a 4-day asthma attack over the weekend/beginning of the week. Also had chronic respiratory infections every couple of months or so all my life, which have thankfully decreased immensely since my tonsillectomy earlier this year.) Here's a link to some of the info: http://personal.nbnet.nb.ca/normap/CFcarriersymptoms.htm They really should do more research on this stuff, because there isn't a whole lot of info on it, and some of it is contradictory. Anyhow, all that long-winded stuff basically boils down to: get yourself tested if you can, just to see, and if it comes up positive you'll know, and if it comes up negative, then you know to look elsewhere for the cause. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 9, 2002 Report Share Posted November 9, 2002 Yes, my daughter was dx'd last month, and they tested myself and my husband to see which mutations we had. It was up to us to have it done, since they were doing one on our daughter already, and didn't need to know ours to figure out hers. I called our insurance company, and they covered it (although, frankly, I'd have done it anyway, as soon as I scraped up the $265 each for my husband and I, just to know.) We're still waiting on the results (takes 3 weeks where we're at to get results back, and they drew the blood near the end of our hospital visit.) Another thing you might want to consider about your symptoms is that you're having " carrier symptoms " . I've come across some information on studies that were done on carriers, and how a good percentage (think it was wandering around the 60% range...I saw this info like over a month ago) have some CF symptoms, even without actually having CF. As my best friend said, nothing is ever completely an on/off switch in genetics. I know that I certainly have respiratory issues (had a 4-day asthma attack over the weekend/beginning of the week. Also had chronic respiratory infections every couple of months or so all my life, which have thankfully decreased immensely since my tonsillectomy earlier this year.) Here's a link to some of the info: http://personal.nbnet.nb.ca/normap/CFcarriersymptoms.htm They really should do more research on this stuff, because there isn't a whole lot of info on it, and some of it is contradictory. Anyhow, all that long-winded stuff basically boils down to: get yourself tested if you can, just to see, and if it comes up positive you'll know, and if it comes up negative, then you know to look elsewhere for the cause. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you for a series of vaccines? Dear Group, I've posted fairly infrequently since my son (now 19 months old with CF) was diagnosed, so I am humbly asking for your ANY and all opinions regarding my two questions: 1) I'm in a tough spot as my husband recently lost his job and I'm wondering about how to spend what's left of our yearly alotted insurance dollars in the next three months. My son is my primary concern, of course. His daily meds (at this time) run about $200/month (THANKFULLY just enzymes and vitamins for now). Our insurance has approved him for a second year of Synagis (for RSV: considering he was severely premature and has CF) and received one vaccination in October. If my husband's insurance changes (ie, we have to go to Cobra), can the insurance company effectively PULL the preauthorization on my son's Synagis (as I understand it's done month-to-month)? 2) I've ALWAYS been a cougher, even when well, and in the past ten-or-so-years, have been bothered by morning coughing in efforts to get the " settled " overnight junk out of my lungs. Since recovering from some weird bug that really whipped me (and my husband) over a month ago, I actually cough up " plugs " of mucous every morning. Also, I am thin because of my " inability " to keep anything in my system. In Junior High I was diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't " go " if I had to. Twenty years later, I know the location of EVERY public restroom in the Tri-State-Area!! Here are my questions, that I would so ENORMOUSLY appreciate ANY responses to: 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid gets pre-authorized is it per VACCINE, or per SEASON? 2) I think I could possibly have CF and not know it. Could anyone recommend a fairly reasonably-priced lab (in the tri-state area) that tests adults for CF? (We cannot afford Ambry) Thank you so much for reading my rant.... I am so VERY depressed. Love to All, Paige PLEASE do not post religious emails to the list. ------------------------------------------- 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 November 9, 2002 Report Share Posted November 9, 2002 Dear , Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Any ideas about where I might get answers? Appreciatively, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 9, 2002 Report Share Posted November 9, 2002 Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 9, 2002 Report Share Posted November 9, 2002 Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 9, 2002 Report Share Posted November 9, 2002 Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 CHECK IT OUT....It is always better to know & be prepared & know how to care for & also to give time to " deal " with it in your heart , either way... it is a wonderful sweet precious one as a gift to you all. .......Noone gets what they cant really handle if they let themselves. we are here!!..........love ya! LOVE & HUGS, grandmomBEV Re: Paige and CF Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 CHECK IT OUT....It is always better to know & be prepared & know how to care for & also to give time to " deal " with it in your heart , either way... it is a wonderful sweet precious one as a gift to you all. .......Noone gets what they cant really handle if they let themselves. we are here!!..........love ya! LOVE & HUGS, grandmomBEV Re: Paige and CF Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 CHECK IT OUT....It is always better to know & be prepared & know how to care for & also to give time to " deal " with it in your heart , either way... it is a wonderful sweet precious one as a gift to you all. .......Noone gets what they cant really handle if they let themselves. we are here!!..........love ya! LOVE & HUGS, grandmomBEV Re: Paige and CF Dear Shanna, Thank you so much for your input... unfortunately BOTH my OB/GYN and primary care physician are not interested in testing ME. They assume that since my son is double Delta 508, my husband and I are each carriers of the Delta 508 gene. Guess they don't want to spend the time or money... whereas I AM. Thank you for the link regarding CF carriers... I am excited (but kind of scared) to check it out! Fondly, Paige Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 Oh hon, don't be scared of information. Even if the info doesn't end up applying to you, it could come in handy later on down the road for someone else. If it does end up applying to you, then at least you're informed, and armed for the fight. (Everyone thought I was nuts to be checking out all the CF info while I was waiting for the day my daughter got tested for CF. Most of them figured that we'd " cross that bridge when we came to it " . I like to know what the bridge looks like, personally, so I can cross it more easily, if possible.) You should be able to demand that they do the test anyway...I'm guessing by your e-mail address that you're in the US. What you might try is talking to the genetics folks at the CF center you take your child to, and see if they will test you for it. That's the folks that are doing our tests, and they were quite happy to do them. We explained that we wanted to know who had what mutation (assuming we have different ones, we don't know yet, because Triana's results went out the same time ours did) so that we could inform our families what mutation to look for. My sister has already been dx'd as a carrier, about 2 months before Triana was dx'd with CF. They told her she's got " the most common mutation " , which we're assuming means deltaF508, but don't know for sure. Anyhow, try the folks at the CF clinic, and see if they'll do it. They might be able to get it under insurance radar as a " necessary " test...I dunno. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 Oh hon, don't be scared of information. Even if the info doesn't end up applying to you, it could come in handy later on down the road for someone else. If it does end up applying to you, then at least you're informed, and armed for the fight. (Everyone thought I was nuts to be checking out all the CF info while I was waiting for the day my daughter got tested for CF. Most of them figured that we'd " cross that bridge when we came to it " . I like to know what the bridge looks like, personally, so I can cross it more easily, if possible.) You should be able to demand that they do the test anyway...I'm guessing by your e-mail address that you're in the US. What you might try is talking to the genetics folks at the CF center you take your child to, and see if they will test you for it. That's the folks that are doing our tests, and they were quite happy to do them. We explained that we wanted to know who had what mutation (assuming we have different ones, we don't know yet, because Triana's results went out the same time ours did) so that we could inform our families what mutation to look for. My sister has already been dx'd as a carrier, about 2 months before Triana was dx'd with CF. They told her she's got " the most common mutation " , which we're assuming means deltaF508, but don't know for sure. Anyhow, try the folks at the CF clinic, and see if they'll do it. They might be able to get it under insurance radar as a " necessary " test...I dunno. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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 November 10, 2002 Report Share Posted November 10, 2002 Oh hon, don't be scared of information. Even if the info doesn't end up applying to you, it could come in handy later on down the road for someone else. If it does end up applying to you, then at least you're informed, and armed for the fight. (Everyone thought I was nuts to be checking out all the CF info while I was waiting for the day my daughter got tested for CF. Most of them figured that we'd " cross that bridge when we came to it " . I like to know what the bridge looks like, personally, so I can cross it more easily, if possible.) You should be able to demand that they do the test anyway...I'm guessing by your e-mail address that you're in the US. What you might try is talking to the genetics folks at the CF center you take your child to, and see if they will test you for it. That's the folks that are doing our tests, and they were quite happy to do them. We explained that we wanted to know who had what mutation (assuming we have different ones, we don't know yet, because Triana's results went out the same time ours did) so that we could inform our families what mutation to look for. My sister has already been dx'd as a carrier, about 2 months before Triana was dx'd with CF. They told her she's got " the most common mutation " , which we're assuming means deltaF508, but don't know for sure. Anyhow, try the folks at the CF clinic, and see if they'll do it. They might be able to get it under insurance radar as a " necessary " test...I dunno. Shanna mom of Triana, age 2 wcf Could I have CF? Does pre-authorization cover you > for a series of vaccines? > > > Dear Group, > > I've posted fairly infrequently since my son (now 19 months old with CF) was > diagnosed, so I am humbly asking for your ANY and all opinions regarding my > two questions: > > 1) I'm in a tough spot as my husband recently lost his job and I'm > wondering about how to spend what's left of our yearly alotted insurance > dollars in the next three months. My son is my primary concern, of course. > His daily meds (at this time) run about $200/month (THANKFULLY just enzymes > and vitamins for now). Our insurance has approved him for a second year of > Synagis (for RSV: considering he was severely premature and has CF) and > received one vaccination in October. If my husband's insurance changes (ie, > we have to go to Cobra), can the insurance company effectively PULL the > preauthorization on my son's Synagis (as I understand it's done > month-to-month)? > > 2) I've ALWAYS been a cougher, even when well, and in the past > ten-or-so-years, have been bothered by morning coughing in efforts to get > the " settled " overnight junk out of my lungs. Since recovering from some > weird bug that really whipped me (and my husband) over a month ago, I > actually cough up " plugs " of mucous every morning. Also, I am thin because > of my " inability " to keep anything in my system. In Junior High I was > diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't > " go " if I had to. Twenty years later, I know the location of EVERY public > restroom in the Tri-State-Area!! > > Here are my questions, that I would so ENORMOUSLY appreciate ANY responses > to: > > 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid > gets pre-authorized is it per VACCINE, or per SEASON? > > 2) I think I could possibly have CF and not know it. Could anyone > recommend a fairly reasonably-priced lab (in the tri-state area) that tests > adults for CF? (We cannot afford Ambry) > > > Thank you so much for reading my rant.... I am so VERY depressed. > Love to All, > Paige > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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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