Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I have a related question. My son's physician refuses to genotype him because he doesn't want to deal with the insurance company. (he also refuses to talk to make a wish and refused to fill out a form needed for the school district because of frequent absences). any ideas how to get the information without the physician? steph, mom of 7 yr old boy wcf > > > hi everyone, > i have been told by my doctors that they can not find the gene for > cf in a blood test even though i have tested positive for the sweat > test four times and have been diagnosed with cf. they said that they > can't test my mother or father for the genes because they would be > identical to mine and if mine don't show up neither would theirs. > they also can't test my sister for the same reason. i am thinking of > adopting because of the cf and how the pregnancy would affect me, > but my sister how dose not have cf could still pass it on to a child > if she were to have one from what i understand. is there anyway to > find out about the gene so that we could give her a heads up. she is > only 19 and a long way from having children but i wonder just the > same thanks mindy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Yes- change physician. That's part of the job. jan >refused to fill out a form > needed for the school district because of frequent absences). > any ideas how to get the information without the physician? > steph, mom of 7 yr old boy wcf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I wish we could, but there are only 2 board certified ped pulmonologists that are considered part of our cf clinic, so there is not a lot of choice. fortunately a nurse finally filled out the form and stamped the doc's name on it, but it took a month! i'm just frustrated with docs who can control everything but don't care. > Yes- change physician. That's part of the job. > > jan > > >refused to fill out a form > > needed for the school district because of frequent absences). > > any ideas how to get the information without the physician? > > steph, mom of 7 yr old boy wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Fire him, he is no good. Any doctor who is worry about the insurance company is a good for nothing in my book. If he refuses to deal for such a small thing then he is going to refuse to prescribe high dollar medicine, as well. Get rid of the bum! > > > > > > hi everyone, > > i have been told by my doctors that they can not find the gene for > > cf in a blood test even though i have tested positive for the sweat > > test four times and have been diagnosed with cf. they said that > they > > can't test my mother or father for the genes because they would be > > identical to mine and if mine don't show up neither would theirs. > > they also can't test my sister for the same reason. i am thinking > of > > adopting because of the cf and how the pregnancy would affect me, > > but my sister how dose not have cf could still pass it on to a > child > > if she were to have one from what i understand. is there anyway to > > find out about the gene so that we could give her a heads up. she > is > > only 19 and a long way from having children but i wonder just the > > same thanks mindy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Oh, geez, we're already on pulmozyme and tobi... are there more high dollar meds??? > > > > > > > > > hi everyone, > > > i have been told by my doctors that they can not find the gene > for > > > cf in a blood test even though i have tested positive for the > sweat > > > test four times and have been diagnosed with cf. they said that > > they > > > can't test my mother or father for the genes because they would > be > > > identical to mine and if mine don't show up neither would theirs. > > > they also can't test my sister for the same reason. i am thinking > > of > > > adopting because of the cf and how the pregnancy would affect me, > > > but my sister how dose not have cf could still pass it on to a > > child > > > if she were to have one from what i understand. is there anyway > to > > > find out about the gene so that we could give her a heads up. she > > is > > > only 19 and a long way from having children but i wonder just the > > > same thanks mindy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I think you are pretty much up there. But, if he is concerned with what the insurance company may say, that is a huge red flag! Been there once. > > > > > > > > > > > > hi everyone, > > > > i have been told by my doctors that they can not find the gene > > for > > > > cf in a blood test even though i have tested positive for the > > sweat > > > > test four times and have been diagnosed with cf. they said that > > > they > > > > can't test my mother or father for the genes because they would > > be > > > > identical to mine and if mine don't show up neither would > theirs. > > > > they also can't test my sister for the same reason. i am > thinking > > > of > > > > adopting because of the cf and how the pregnancy would affect > me, > > > > but my sister how dose not have cf could still pass it on to a > > > child > > > > if she were to have one from what i understand. is there anyway > > to > > > > find out about the gene so that we could give her a heads up. > she > > > is > > > > only 19 and a long way from having children but i wonder just > the > > > > same thanks mindy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 You MUST go to a CF center OR pick a ped & tell him you want a visit appt. Get him to sign all the papers & they use him/her if there is a nonrelated reason. stumped toe(?) LOVE & HUGS, GRDMBEV Re: cf gene I have a related question. My son's physician refuses to genotype him because he doesn't want to deal with the insurance company. (he also refuses to talk to make a wish and refused to fill out a form needed for the school district because of frequent absences). any ideas how to get the information without the physician? steph, mom of 7 yr old boy wcf > > > hi everyone, > i have been told by my doctors that they can not find the gene for > cf in a blood test even though i have tested positive for the sweat > test four times and have been diagnosed with cf. they said that they > can't test my mother or father for the genes because they would be > identical to mine and if mine don't show up neither would theirs. > they also can't test my sister for the same reason. i am thinking of > adopting because of the cf and how the pregnancy would affect me, > but my sister how dose not have cf could still pass it on to a child > if she were to have one from what i understand. is there anyway to > find out about the gene so that we could give her a heads up. she is > only 19 and a long way from having children but i wonder just the > same thanks mindy. ------------------------------------------- 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 12, 2003 Report Share Posted November 12, 2003 get THE NURSE TO ALL THE FORMS FOR ANYTHING YOU NEED . then IT IS ALL CORRECT . THE WISH FORM, THE SCHOOL & ANY OTHER THING YOU WANT I AM GALS YOU FOUND THE LIGHT FOR THAT DARK TUNNEL THE DOC IS IN love & hugs, GRANDMOMbev Re: cf gene I wish we could, but there are only 2 board certified ped pulmonologists that are considered part of our cf clinic, so there is not a lot of choice. fortunately a nurse finally filled out the form and stamped the doc's name on it, but it took a month! i'm just frustrated with docs who can control everything but don't care. > Yes- change physician. That's part of the job. > > jan > > >refused to fill out a form > > needed for the school district because of frequent absences). > > any ideas how to get the information without the physician? > > steph, mom of 7 yr old boy wcf > > ------------------------------------------- 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 12, 2003 Report Share Posted November 12, 2003 I would look for a new doc if he refused to " deal " with the issues you have,. Make a Wish.typing of the genes and school issues. Dont you have a Social worker thru the hospital that could help you with these things. THe cf center my son went to in Ohio could not of been more accomadating in any of these matters. Make a wish is a very wonderful organization and your child should be able to get a wish. If your cf doc wont help go to another doc you know. Also as far as the school situation, shame on the doctor for not helping to make that easier on you. They have pamplets that explain all about cf and how the children might miss school. I wouild go to the hospital administrator and get these issued settled. that doctor is just adding more stress to your life and that isnt fair. > >Reply-To: cfparents >To: cfparents >Subject: Re: cf gene >Date: Wed, 12 Nov 2003 20:00:21 -0700 >MIME-Version: 1.0 >X-Originating-IP: 66.242.100.3 >Received: from n18.grp.scd.yahoo.com ([66.218.66.73]) by mc6-f9.hotmail.com >with Microsoft SMTPSVC(5.0.2195.6713); Wed, 12 Nov 2003 18:47:42 -0800 >Received: from [66.218.66.160] by n18.grp.scd.yahoo.com with NNFMP; 13 Nov >2003 02:41:50 -0000 >Received: (qmail 60336 invoked from network); 13 Nov 2003 02:41:49 -0000 >Received: from unknown (66.218.66.217) by m20.grp.scd.yahoo.com with QMQP; >13 Nov 2003 02:41:49 -0000 >Received: from unknown (HELO medusa.veiinternet.com) (66.242.100.3) by >mta2.grp.scd.yahoo.com with SMTP; 13 Nov 2003 02:41:48 -0000 >Received: from [67.234.189.49] (unverified [67.234.189.49]) by >medusa.veiinternet.com (Vircom SMTPRS 3.0.272) with ESMTP id > for <cfparents >; Wed, >12 Nov 2003 21:41:47 -0500 >X-Message-Info: JGTYoYF78jGIKAZBHefgAjy8jdUluaoz >X-eGroups-Return: >sentto-104900-51966-1068691309-clog1760=msn.com@... >X-Sender: lenora@... >X-Apparently-To: cfparents >X-Sender: lenora@... >Message-Id: <a05111b02bbd8a4232d3e@[67.234.189.49]> >In-Reply-To: <bouho0+d8ik (AT) eGroups (DOT) com> >References: <bouho0+d8ik (AT) eGroups (DOT) com> >X-Yahoo-Profile: senoralenora2002 >Mailing-List: list cfparents ; contact >cfparents-owner >Delivered-To: mailing list cfparents >Precedence: bulk >List-Unsubscribe: <mailto:cfparents-unsubscribe > >Return-Path: >sentto-104900-51966-1068691309-clog1760=msn.com@... >X-OriginalArrivalTime: 13 Nov 2003 02:47:43.0125 (UTC) >FILETIME=[82CB4450:01C3A990] > >Does he attend an accredited CF center overseen by the CF Foundation? >Lenora > > >I have a related question. My son's physician refuses to genotype > >him because he doesn't want to deal with the insurance company. (he > >also refuses to talk to make a wish and refused to fill out a form > >needed for the school district because of frequent absences). > >any ideas how to get the information without the physician? > >steph, mom of 7 yr old boy wcf > > > > > >> > >> > >> hi everyone, > >> i have been told by my doctors that they can not find the gene for > >> cf in a blood test even though i have tested positive for the sweat > >> test four times and have been diagnosed with cf. they said that > >they > >> can't test my mother or father for the genes because they would be > >> identical to mine and if mine don't show up neither would theirs. > >> they also can't test my sister for the same reason. i am thinking > >of > >> adopting because of the cf and how the pregnancy would affect me, > >> but my sister how dose not have cf could still pass it on to a > >child > >> if she were to have one from what i understand. is there anyway to > >> find out about the gene so that we could give her a heads up. she > >is > >> only 19 and a long way from having children but i wonder just the > >> same thanks mindy. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Does he attend an accredited CF center overseen by the CF Foundation? Lenora >I have a related question. My son's physician refuses to genotype >him because he doesn't want to deal with the insurance company. (he >also refuses to talk to make a wish and refused to fill out a form >needed for the school district because of frequent absences). >any ideas how to get the information without the physician? >steph, mom of 7 yr old boy wcf > > >> >> >> hi everyone, >> i have been told by my doctors that they can not find the gene for >> cf in a blood test even though i have tested positive for the sweat >> test four times and have been diagnosed with cf. they said that >they >> can't test my mother or father for the genes because they would be >> identical to mine and if mine don't show up neither would theirs. >> they also can't test my sister for the same reason. i am thinking >of >> adopting because of the cf and how the pregnancy would affect me, >> but my sister how dose not have cf could still pass it on to a >child >> if she were to have one from what i understand. is there anyway to >> find out about the gene so that we could give her a heads up. she >is >> only 19 and a long way from having children but i wonder just the >> same thanks mindy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Steph, Our experience with our HMO in-network CFF accredited cf clinic was a nightmare. The pulmonologist was semi retired and lacked a pulse, well at least a personality. As soon as he heard Zach's genotype, he diagnosed Zach as having a mild case of cf and cpt for him would be trivial compared to getting lots of exercise. I freaked out and got an out-of-network referral from my pediatrician to another clinic. The referral was denied. We had to appeal. During the appeals process they requested the office notes from our visit. The notes could not be faxed to the insurance company because they did not exist. The doctor wrote nothing down! Our insurance company approved the out-of-network cf clinic finally, but not before reminding me that I was welcome to pay for these services myself! I hope you can find a doctor more interested in properly caring for all your son's needs. A quick idea about genetic testing. You and your son's father could be tested. Then you would know the genes your son inherited. Sara Good luck! I hope you find a physician that takes an interest in taking care of your son needs. Sara - mommy of Zach 21 months > I have a related question. My son's physician refuses to genotype > him because he doesn't want to deal with the insurance company. (he > also refuses to talk to make a wish and refused to fill out a form > needed for the school district because of frequent absences). > any ideas how to get the information without the physician? > steph, mom of 7 yr old boy wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 In as few words as possible get a new dr this one is terrible Maureen Re: cf gene > I have a related question. My son's physician refuses to genotype > him because he doesn't want to deal with the insurance company. (he > also refuses to talk to make a wish and refused to fill out a form > needed for the school district because of frequent absences). > any ideas how to get the information without the physician? > steph, mom of 7 yr old boy wcf > > > > > > > > hi everyone, > > i have been told by my doctors that they can not find the gene for > > cf in a blood test even though i have tested positive for the sweat > > test four times and have been diagnosed with cf. they said that > they > > can't test my mother or father for the genes because they would be > > identical to mine and if mine don't show up neither would theirs. > > they also can't test my sister for the same reason. i am thinking > of > > adopting because of the cf and how the pregnancy would affect me, > > but my sister how dose not have cf could still pass it on to a > child > > if she were to have one from what i understand. is there anyway to > > find out about the gene so that we could give her a heads up. she > is > > only 19 and a long way from having children but i wonder just the > > same thanks mindy. > > > > ------------------------------------------- > 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 13, 2003 Report Share Posted November 13, 2003 Thank you all for your support. Just to respond to a few questions, yes we have a social worker (although we've never really used her for anything). I will try to get the MAW through his pediatrician. I'll let you know how it goes! > > > > > > > > > hi everyone, > > > i have been told by my doctors that they can not find the gene for > > > cf in a blood test even though i have tested positive for the sweat > > > test four times and have been diagnosed with cf. they said that > > they > > > can't test my mother or father for the genes because they would be > > > identical to mine and if mine don't show up neither would theirs. > > > they also can't test my sister for the same reason. i am thinking > > of > > > adopting because of the cf and how the pregnancy would affect me, > > > but my sister how dose not have cf could still pass it on to a > > child > > > if she were to have one from what i understand. is there anyway to > > > find out about the gene so that we could give her a heads up. she > > is > > > only 19 and a long way from having children but i wonder just the > > > same thanks mindy. > > > > > > > > ------------------------------------------- > > 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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