Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 , I appreciate your immense knowledge on this subject. I too get a bit perturbed when people hear misinformation from their doctors and then pass it along as if it were fact. This group, especially, should understand that if so few doctors are knowledgeable concerning plagiocephacly, most are equally unknowledgeable concerning the methods of treatment. As I have said before the medical profession is not an exact science. Doctor's only recommend things they are familiar with. Why do you think drug companies spend so much money advertising their drugs to doctors? If a doctor isn't familiar with the DOC Band you are very likely to get misinformation. And then that misinformation gets passed around, because we have been taught to follow the doctor's orders. We as a group should know better than to blindly accept a doctor's information. We are our children's best advocate. We need to search out the available information and educate ourselves. Wow - Sorry for the long post. As a sidenote, it's interesting that in cities that have Cranial Technologies it's hard to find anybody that offers the helmet. I wonder why? Anybody in Dallas have anything other than a DOC Band? Larry - Dad to , Doc Band Graduate. >From: " , " <kevin@...> >Reply-Plagiocephalyegroups > " 'plagiocephalyegroups' " <plagiocephalyegroups> >Subject: bands, helmets and the FDA >Date: Wed, 19 Apr 2000 10:02:37 -0500 > >To all, > >I'm sorry but the misinformation about the DOC band and the FDA is starting >to get to me! The opinion expressed below are my own! They do not reflect >the University of Iowa or Cranial Technologies. > >The Cranial Technologies Statement on the FDA process can be found at >http://www.plagiocephaly.org/resources/fdanote.htm. The FDA statement on >the device was published in the Federal Register and is available at >http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=1998_register & doci >d=fr30jy98-13 (there is a working link at http://www.plagiocephaly.org) > >Anyone who tells you that Cranial Technologies sought out regulation by the >FDA is sorely misinformed (think about it). > >In fact, the FDA approached Cranial Tech to inform them that the DOC band >fell into a device class regulated by the FDA. Cranial Tech worked >diligently to repond to FDA requests. Among numerous other items, the FDA >requested documentation that the DOC band was effective and did not >restrict >cranial growth. We were able to pull that information together and respond >to the FDA questions because of Cranial Tech's monitoring system (see the >Federal Registry link at http://www.plagiocephaly.org) > >As for the helmet programs, they will need to do the same. NOT because >Cranial Tech made the FDA regulate cranial orthoses. The helmet programs >will need to comply because it is the law. If they are as safe and >effective >as the DOC band they should have no problem complying. > > M. , Ph.D. >http://www.KM.net/ >http://www.MedAnth.org/ >Associate Research Scientist >U of IA -- College of Public Health >http://www.Public-Health.UIowa.edu > >------------------------------------------------------------------------ >Avoid the lines and visit avis.com for quick and easy online >reservations. Enjoy a compact car nationwide for only $29 a day! >Click here for more details. >1/3011/3/_/689409/_/956156550/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Christi, My comments were not intended to be an attack on your choices or decisions. What I am frustrated at is the doctor's out there that are passing out misinformation. Also I get frustrated when this type of misinformation keeps getting passed on. As I stated we are our children's best advocate. We have to do what's best for our children. DOC Band vs. Helmet is a personal choice. Only you know what's best for your child. I apologize if my comments were sign as a personal attack, because they were not meant to be. Larry - Dad to , DOC Band Graduate >From: christik99@... >Reply-Plagiocephalyegroups ><Plagiocephalyegroups> >Subject: Re: bands, helmets and the FDA >Date: Wed, 19 Apr 2000 12:16:57 -0700 > >ok just to clear things up i said before that was the drs opinions not my >own and if i lived closer to a clinic i may have tried the DOC band but i >too am sick and tired of b/c we had no other chioce then the helmet being >told we are doing something wrong or illegall . when the hospital would not >be able to give us helmets if that was the case . the hospital where jenna >got hers has been making them since 1976 and makes 60 a year . are we who >cant afford to make the trip to be made feel guilty for trying to help our >children?everyone agrees they both do the same job band maybe a little >quicker. but i didnt think this was a compatition?and im sure there are not >many people who have helmets in cities with doc clinics , like i have said >before i may have tried them myself if closer .so whats the point of that ? >i think its to dig in at people who use helmets well i know im being bitchy >but i have had no sleep, and am trying to get ready to host the preschool >easter party.i have ehough people who give me crap just about getting the >helmet b/c they all still tell me her head will round out and im hurting >her >,then to get crap her where i come for support.i wont be back on till late >tonight i think , hopefully the day starts looking up after this >christi >-----Original Message----- >From: Larry Hoffman <travis_dad@...> >Plagiocephalyegroups <Plagiocephalyegroups> >Date: Wednesday, April 19, 2000 8:53 AM >Subject: Re: bands, helmets and the FDA > > > >, > > > >I appreciate your immense knowledge on this subject. I too get a bit > >perturbed when people hear misinformation from their doctors and then >pass > >it along as if it were fact. This group, especially, should understand >that > >if so few doctors are knowledgeable concerning plagiocephacly, most are > >equally unknowledgeable concerning the methods of treatment. As I have >said > >before the medical profession is not an exact science. Doctor's only > >recommend things they are familiar with. Why do you think drug companies > >spend so much money advertising their drugs to doctors? If a doctor >isn't > >familiar with the DOC Band you are very likely to get misinformation. >And > >then that misinformation gets passed around, because we have been taught >to > >follow the doctor's orders. We as a group should know better than to > >blindly accept a doctor's information. We are our children's best >advocate. > > We need to search out the available information and educate ourselves. > > > >Wow - Sorry for the long post. As a sidenote, it's interesting that in > >cities that have Cranial Technologies it's hard to find anybody that >offers > >the helmet. I wonder why? Anybody in Dallas have anything other than a >DOC > >Band? > > > >Larry - Dad to , Doc Band Graduate. > > > >>From: " , " <kevin@...> > >>Reply-Plagiocephalyegroups > >> " 'plagiocephalyegroups' " <plagiocephalyegroups> > >>Subject: bands, helmets and the FDA > >>Date: Wed, 19 Apr 2000 10:02:37 -0500 > >> > >>To all, > >> > >>I'm sorry but the misinformation about the DOC band and the FDA is >starting > >>to get to me! The opinion expressed below are my own! They do not >reflect > >>the University of Iowa or Cranial Technologies. > >> > >>The Cranial Technologies Statement on the FDA process can be found at > >>http://www.plagiocephaly.org/resources/fdanote.htm. The FDA statement >on > >>the device was published in the Federal Register and is available at > >>http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=1998_register & do >ci > >>d=fr30jy98-13 (there is a working link at http://www.plagiocephaly.org) > >> > >>Anyone who tells you that Cranial Technologies sought out regulation by >the > >>FDA is sorely misinformed (think about it). > >> > >>In fact, the FDA approached Cranial Tech to inform them that the DOC >band > >>fell into a device class regulated by the FDA. Cranial Tech worked > >>diligently to repond to FDA requests. Among numerous other items, the >FDA > >>requested documentation that the DOC band was effective and did not > >>restrict > >>cranial growth. We were able to pull that information together and >respond > >>to the FDA questions because of Cranial Tech's monitoring system (see >the > >>Federal Registry link at http://www.plagiocephaly.org) > >> > >>As for the helmet programs, they will need to do the same. NOT because > >>Cranial Tech made the FDA regulate cranial orthoses. The helmet >programs > >>will need to comply because it is the law. If they are as safe and > >>effective > >>as the DOC band they should have no problem complying. > >> > >> M. , Ph.D. > >>http://www.KM.net/ > >>http://www.MedAnth.org/ > >>Associate Research Scientist > >>U of IA -- College of Public Health > >>http://www.Public-Health.UIowa.edu > >> > >>------------------------------------------------------------------------ > >>Avoid the lines and visit avis.com for quick and easy online > >>reservations. Enjoy a compact car nationwide for only $29 a day! > >>Click here for more details. > >>1/3011/3/_/689409/_/956156550/ > >>------------------------------------------------------------------------ > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 yea . Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 By the way do you anything about this study of 300 kids and how half were left to nature and half were fitted with devices? Supposed these mild to moderate kids all turned out the same. I couldn't find it in the Links. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 One additional thing I would like to clear up (I think I've said this before on this list). My concern about mis-informaion is directed at professionals in the medical community and NOT at caring parents on and off this list. Parents must make choices for their childern! Heck parents have to make choices for themselves. I would simple like everyone to be able to make the best informed choice from among the AVAILABLE alternatives. It is my simple opinion, that some of the information that healthcare providers are spreading about the FDA regulation process (for example, what happened, how long process takes) does not allow parents to make an informed choice. Do I wait? Do I look elsewhere? Maybe you can only wait. But shouldn't you be able to decide that based on the realities of the situation? Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Christi! Oh gee, I tell you, if our local helmet maker had as much experience as yours does - I'd be doing it here, with a helmet! Flying/driving to Dallas is a pain in the butt and expensive, too! We have sacrificed a lot as well, especially on one income. I see a lot less of my husband because he is taking extra work to pay for all this. A lot of us here do have the DOC band, but I genuinely don't think we were/are trying to disrespect you. I think it was likely more addressed to the Dr.'s opinions and false information, than to you personally. Another new member posted a lot more misinformation on bands & helmets given by a doctor just yesterday or the day before! Our own doctor was very critical of the DOC, basically said the same thing as yours did. You are making the best choice for your child and family - that is what is REALLY important. You are doing a great job! Especially with twins. I give you so much credit! (I can hardly keep it together at times with just two!) Tami christik99@a... wrote: > ok just to clear things up i said before that was the drs opinions not my > own and if i lived closer to a clinic i may have tried the DOC band but i > too am sick and tired of b/c we had no other chioce then the helmet being > told we are doing something wrong or illegall . when the hospital would not > be able to give us helmets if that was the case . the hospital where jenna > got hers has been making them since 1976 and makes 60 a year . are we who > cant afford to make the trip to be made feel guilty for trying to help our > children?everyone agrees they both do the same job band maybe a little > quicker. but i didnt think this was a compatition?and im sure there are not > many people who have helmets in cities with doc clinics , like i have said > before i may have tried them myself if closer .so whats the point of that ? > i think its to dig in at people who use helmets well i know im being bitchy > but i have had no sleep, and am trying to get ready to host the preschool > easter party.i have ehough people who give me crap just about getting the > helmet b/c they all still tell me her head will round out and im hurting her > ,then to get crap her where i come for support.i wont be back on till late > tonight i think , hopefully the day starts looking up after this > christi > -----Original Message----- > From: Larry Hoffman <travis_dad@...> > Plagiocephalyegroups <Plagiocephalyegroups> > Date: Wednesday, April 19, 2000 8:53 AM > Subject: Re: bands, helmets and the FDA > > > >, > > > >I appreciate your immense knowledge on this subject. I too get a bit > >perturbed when people hear misinformation from their doctors and then pass > >it along as if it were fact. This group, especially, should understand > that > >if so few doctors are knowledgeable concerning plagiocephacly, most are > >equally unknowledgeable concerning the methods of treatment. As I have said > >before the medical profession is not an exact science. Doctor's only > >recommend things they are familiar with. Why do you think drug companies > >spend so much money advertising their drugs to doctors? If a doctor isn't > >familiar with the DOC Band you are very likely to get misinformation. And > >then that misinformation gets passed around, because we have been taught to > >follow the doctor's orders. We as a group should know better than to > >blindly accept a doctor's information. We are our children's best > advocate. > > We need to search out the available information and educate ourselves. > > > >Wow - Sorry for the long post. As a sidenote, it's interesting that in > >cities that have Cranial Technologies it's hard to find anybody that offers > >the helmet. I wonder why? Anybody in Dallas have anything other than a DOC > >Band? > > > >Larry - Dad to , Doc Band Graduate. > > > >>From: " , " <kevin@...> > >>Reply-Plagiocephalyegroups > >> " 'plagiocephalyegroups' " <plagiocephalyegroups> > >>Subject: bands, helmets and the FDA > >>Date: Wed, 19 Apr 2000 10:02:37 -0500 > >> > >>To all, > >> > >>I'm sorry but the misinformation about the DOC band and the FDA is > starting > >>to get to me! The opinion expressed below are my own! They do not > reflect > >>the University of Iowa or Cranial Technologies. > >> > >>The Cranial Technologies Statement on the FDA process can be found at > >>http://www.plagiocephaly.org/resources/fdanote.htm. The FDA statement on > >>the device was published in the Federal Register and is available at > >>http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi? dbname=1998_register & do > ci > >>d=fr30jy98-13 (there is a working link at http://www.plagiocephaly.org) > >> > >>Anyone who tells you that Cranial Technologies sought out regulation by > the > >>FDA is sorely misinformed (think about it). > >> > >>In fact, the FDA approached Cranial Tech to inform them that the DOC band > >>fell into a device class regulated by the FDA. Cranial Tech worked > >>diligently to repond to FDA requests. Among numerous other items, the FDA > >>requested documentation that the DOC band was effective and did not > >>restrict > >>cranial growth. We were able to pull that information together and > respond > >>to the FDA questions because of Cranial Tech's monitoring system (see the > >>Federal Registry link at http://www.plagiocephaly.org) > >> > >>As for the helmet programs, they will need to do the same. NOT because > >>Cranial Tech made the FDA regulate cranial orthoses. The helmet programs > >>will need to comply because it is the law. If they are as safe and > >>effective > >>as the DOC band they should have no problem complying. > >> > >> M. , Ph.D. > >>http://www.KM.net/ > >>http://www.MedAnth.org/ > >>Associate Research Scientist > >>U of IA -- College of Public Health > >>http://www.Public-Health.UIowa.edu > >> > >>------------------------------------------------------------------ ------ > >>Avoid the lines and visit avis.com for quick and easy online > >>reservations. Enjoy a compact car nationwide for only $29 a day! > >>Click here for more details. > >>1/3011/3/_/689409/_/956156550/ > >>------------------------------------------------------------------ ------ > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Try the FDA link in the right hand column at http://www.plagiocephaly.org (the link I put in the message gets messed up with the text wrapping) Only time will tell if your Doctors are correct about the FDA. I'm assuming they can continue to make helmets until the FDA tells them otherwise. I don't know who you spoke to at Cranial Tech, my experience has been that Cranial Tech has emphasized that the DOC band is the only FDA approved cranial orthosis. That is currently true. > and kevin the fda statement link doesnt work and cranial tech tell me that > my helmets is ilegal is the same as my drs telling me they dont need fda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 ok just to clear things up i said before that was the drs opinions not my own and if i lived closer to a clinic i may have tried the DOC band but i too am sick and tired of b/c we had no other chioce then the helmet being told we are doing something wrong or illegall . when the hospital would not be able to give us helmets if that was the case . the hospital where jenna got hers has been making them since 1976 and makes 60 a year . are we who cant afford to make the trip to be made feel guilty for trying to help our children?everyone agrees they both do the same job band maybe a little quicker. but i didnt think this was a compatition?and im sure there are not many people who have helmets in cities with doc clinics , like i have said before i may have tried them myself if closer .so whats the point of that ? i think its to dig in at people who use helmets well i know im being bitchy but i have had no sleep, and am trying to get ready to host the preschool easter party.i have ehough people who give me crap just about getting the helmet b/c they all still tell me her head will round out and im hurting her ,then to get crap her where i come for support.i wont be back on till late tonight i think , hopefully the day starts looking up after this christi -----Original Message----- From: Larry Hoffman <travis_dad@...> Plagiocephalyegroups <Plagiocephalyegroups> Date: Wednesday, April 19, 2000 8:53 AM Subject: Re: bands, helmets and the FDA >, > >I appreciate your immense knowledge on this subject. I too get a bit >perturbed when people hear misinformation from their doctors and then pass >it along as if it were fact. This group, especially, should understand that >if so few doctors are knowledgeable concerning plagiocephacly, most are >equally unknowledgeable concerning the methods of treatment. As I have said >before the medical profession is not an exact science. Doctor's only >recommend things they are familiar with. Why do you think drug companies >spend so much money advertising their drugs to doctors? If a doctor isn't >familiar with the DOC Band you are very likely to get misinformation. And >then that misinformation gets passed around, because we have been taught to >follow the doctor's orders. We as a group should know better than to >blindly accept a doctor's information. We are our children's best advocate. > We need to search out the available information and educate ourselves. > >Wow - Sorry for the long post. As a sidenote, it's interesting that in >cities that have Cranial Technologies it's hard to find anybody that offers >the helmet. I wonder why? Anybody in Dallas have anything other than a DOC >Band? > >Larry - Dad to , Doc Band Graduate. > >>From: " , " <kevin@...> >>Reply-Plagiocephalyegroups >> " 'plagiocephalyegroups' " <plagiocephalyegroups> >>Subject: bands, helmets and the FDA >>Date: Wed, 19 Apr 2000 10:02:37 -0500 >> >>To all, >> >>I'm sorry but the misinformation about the DOC band and the FDA is starting >>to get to me! The opinion expressed below are my own! They do not reflect >>the University of Iowa or Cranial Technologies. >> >>The Cranial Technologies Statement on the FDA process can be found at >>http://www.plagiocephaly.org/resources/fdanote.htm. The FDA statement on >>the device was published in the Federal Register and is available at >>http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=1998_register & do ci >>d=fr30jy98-13 (there is a working link at http://www.plagiocephaly.org) >> >>Anyone who tells you that Cranial Technologies sought out regulation by the >>FDA is sorely misinformed (think about it). >> >>In fact, the FDA approached Cranial Tech to inform them that the DOC band >>fell into a device class regulated by the FDA. Cranial Tech worked >>diligently to repond to FDA requests. Among numerous other items, the FDA >>requested documentation that the DOC band was effective and did not >>restrict >>cranial growth. We were able to pull that information together and respond >>to the FDA questions because of Cranial Tech's monitoring system (see the >>Federal Registry link at http://www.plagiocephaly.org) >> >>As for the helmet programs, they will need to do the same. NOT because >>Cranial Tech made the FDA regulate cranial orthoses. The helmet programs >>will need to comply because it is the law. If they are as safe and >>effective >>as the DOC band they should have no problem complying. >> >> M. , Ph.D. >>http://www.KM.net/ >>http://www.MedAnth.org/ >>Associate Research Scientist >>U of IA -- College of Public Health >>http://www.Public-Health.UIowa.edu >> >>------------------------------------------------------------------------ >>Avoid the lines and visit avis.com for quick and easy online >>reservations. Enjoy a compact car nationwide for only $29 a day! >>Click here for more details. >>1/3011/3/_/689409/_/956156550/ >>------------------------------------------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 and kevin the fda statement link doesnt work and cranial tech tell me that my helmets is ilegal is the same as my drs telling me they dont need fda aproval christi -----Original Message----- From: christik99@... <christik99@...> Plagiocephalyegroups <Plagiocephalyegroups> Date: Wednesday, April 19, 2000 9:13 AM Subject: Re: bands, helmets and the FDA >ok just to clear things up i said before that was the drs opinions not my >own and if i lived closer to a clinic i may have tried the DOC band but i >too am sick and tired of b/c we had no other chioce then the helmet being >told we are doing something wrong or illegall . when the hospital would not >be able to give us helmets if that was the case . the hospital where jenna >got hers has been making them since 1976 and makes 60 a year . are we who >cant afford to make the trip to be made feel guilty for trying to help our >children?everyone agrees they both do the same job band maybe a little >quicker. but i didnt think this was a compatition?and im sure there are not >many people who have helmets in cities with doc clinics , like i have said >before i may have tried them myself if closer .so whats the point of that ? >i think its to dig in at people who use helmets well i know im being bitchy >but i have had no sleep, and am trying to get ready to host the preschool >easter party.i have ehough people who give me crap just about getting the >helmet b/c they all still tell me her head will round out and im hurting her >,then to get crap her where i come for support.i wont be back on till late >tonight i think , hopefully the day starts looking up after this >christi >-----Original Message----- >From: Larry Hoffman <travis_dad@...> >Plagiocephalyegroups <Plagiocephalyegroups> >Date: Wednesday, April 19, 2000 8:53 AM >Subject: Re: bands, helmets and the FDA > > >>, >> >>I appreciate your immense knowledge on this subject. I too get a bit >>perturbed when people hear misinformation from their doctors and then pass >>it along as if it were fact. This group, especially, should understand >that >>if so few doctors are knowledgeable concerning plagiocephacly, most are >>equally unknowledgeable concerning the methods of treatment. As I have said >>before the medical profession is not an exact science. Doctor's only >>recommend things they are familiar with. Why do you think drug companies >>spend so much money advertising their drugs to doctors? If a doctor isn't >>familiar with the DOC Band you are very likely to get misinformation. And >>then that misinformation gets passed around, because we have been taught to >>follow the doctor's orders. We as a group should know better than to >>blindly accept a doctor's information. We are our children's best >advocate. >> We need to search out the available information and educate ourselves. >> >>Wow - Sorry for the long post. As a sidenote, it's interesting that in >>cities that have Cranial Technologies it's hard to find anybody that offers >>the helmet. I wonder why? Anybody in Dallas have anything other than a DOC >>Band? >> >>Larry - Dad to , Doc Band Graduate. >> >>>From: " , " <kevin@...> >>>Reply-Plagiocephalyegroups >>> " 'plagiocephalyegroups' " <plagiocephalyegroups> >>>Subject: bands, helmets and the FDA >>>Date: Wed, 19 Apr 2000 10:02:37 -0500 >>> >>>To all, >>> >>>I'm sorry but the misinformation about the DOC band and the FDA is >starting >>>to get to me! The opinion expressed below are my own! They do not >reflect >>>the University of Iowa or Cranial Technologies. >>> >>>The Cranial Technologies Statement on the FDA process can be found at >>>http://www.plagiocephaly.org/resources/fdanote.htm. The FDA statement on >>>the device was published in the Federal Register and is available at >>>http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=1998_register & d o >ci >>>d=fr30jy98-13 (there is a working link at http://www.plagiocephaly.org) >>> >>>Anyone who tells you that Cranial Technologies sought out regulation by >the >>>FDA is sorely misinformed (think about it). >>> >>>In fact, the FDA approached Cranial Tech to inform them that the DOC band >>>fell into a device class regulated by the FDA. Cranial Tech worked >>>diligently to repond to FDA requests. Among numerous other items, the FDA >>>requested documentation that the DOC band was effective and did not >>>restrict >>>cranial growth. We were able to pull that information together and >respond >>>to the FDA questions because of Cranial Tech's monitoring system (see the >>>Federal Registry link at http://www.plagiocephaly.org) >>> >>>As for the helmet programs, they will need to do the same. NOT because >>>Cranial Tech made the FDA regulate cranial orthoses. The helmet programs >>>will need to comply because it is the law. If they are as safe and >>>effective >>>as the DOC band they should have no problem complying. >>> >>> M. , Ph.D. >>>http://www.KM.net/ >>>http://www.MedAnth.org/ >>>Associate Research Scientist >>>U of IA -- College of Public Health >>>http://www.Public-Health.UIowa.edu >>> >>>------------------------------------------------------------------------ >>>Avoid the lines and visit avis.com for quick and easy online >>>reservations. Enjoy a compact car nationwide for only $29 a day! >>>Click here for more details. >>>1/3011/3/_/689409/_/956156550/ >>>------------------------------------------------------------------------ >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 boy do i know where you are coming from!!! i am thankfully not hosting any preschool easter parties this week or any other but talk about overworked and underpaid.i too feel like maybe i'm not doing any justice to olivia by having her wear this helmet.i don't know if a doc band is available anywhere close to where i live.i just went with the advice of the pediatrician(by the by,no other children in this practice have cranio or plagio so it's new to them too) and the advice of the neuro we saw.i don't really have too much of a say in insurance issues because olivia is on what we call mass health here in massachusetts which is like public assistance because she is not my child,but my sister's.i hope and pray day and night i am doing the right thing with this helmet...it seems to have helped but what the h*ll do i know? lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 > By the way do you anything about this study of 300 kids and how half were > left to nature and half were fitted with devices? Supposed these mild to > moderate kids all turned out the same. > > I couldn't find it in the Links. > > Judy Judy, What study is that? Is my old age setting in? Sorry! You'll all know about this when you have teenagers!!! ;-) Thanks for the info! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Every person does what is best for their situation and experience.... I don't feel that there has been a competition here between helmet or band -- and Christi is right -- if a parent is coming here for support, this simply SHOULDN'T be what is debated... I feel that everyone here wants to help their baby --- through whatever means necessary. This is a matter of education (sometimes parents educating doctors, sometimes drs. educating parents), of knowing options, of making choices. Of standing up for what we know can be changed, and being heard. Many of us feel frustrated because more information wasn't given to us when we wanted it or needed it. We should all be PROUD that we are doing something pro-active to help our children. There is a lot of frustration out there dealing with insurance and Drs. who don't want us to tell them how to treat patients (which is what it sort of comes down to). Some parents here are dealing with other physical problems other than plagiocephaly, and don't know if the plagiocephaly is the cause or if it is " just one more thing to worry about. " I truly hope that no one feels that he/she is being questioned HERE for the type of treatment he/she has chosen for their child. If so, we are doing as great a disservice to these parents as some of us feel our Dr.s have treated us, and then some. I feel that the FDA statements and links about the DOC band, etc. weren't meant to second guess any statements given, or question any one person, but were given so that the next time ANY parent here hears the same or similar information about helmets from their own Drs. that he/she is informed enough to give the Dr. the most current information available. That's not to say that the doctor will listen to it or believe it (having articles might help) -- but at least parents here can be empowered enough to question the information that is given to them.... and if any of us didn't happen to have current information when our babies were newborns (like the importance of tummy time, or varying the side of the head the baby sleeps), we simply have to LET GO of any guilt we may feel, and move ahead from today.... one step at a time. For guilt and anger can lead to some very powerful negative effects on our own physical and mental health.... I know this is a lot to try and do. I can't say I do it every day. Being able to vent a little here helps us all, I think. Together we can try and be supportive no matter what kind of mood these myriad issues bring to us on a given day.... can't we? Much peace. (a.k.a. " Kali " ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 - Applause for - I think this has been a very emotional week for most of us. A lot has been said. Let's not hold any grudges, ok? We're all here to help one another, so lets put smiles on our faces and get back to business!! Everyone smiling??? I'll go then. Kendra Kali wrote: Every person does what is best for their situation and experience.... I don't feel that there has been a competition here between helmet or band -- and Christi is right -- if a parent is coming here for support, this simply SHOULDN'T be what is debated... I feel that everyone here wants to help their baby --- through whatever means necessary. This is a matter of education (sometimes parents educating doctors, sometimes drs. educating parents), of knowing options, of making choices. Of standing up for what we know can be changed, and being heard. Many of us feel frustrated because more information wasn't given to us when we wanted it or needed it. We should all be PROUD that we are doing something pro-active to help our children. There is a lot of frustration out there dealing with insurance and Drs. who don't want us to tell them how to treat patients (which is what it sort of comes down to). Some parents here are dealing with other physical problems other than plagiocephaly, and don't know if the plagiocephaly is the cause or if it is "just one more thing to worry about." I truly hope that no one feels that he/she is being questioned HERE for the type of treatment he/she has chosen for their child. If so, we are doing as great a disservice to these parents as some of us feel our Dr.s have treated us, and then some. I feel that the FDA statements and links about the DOC band, etc. weren't meant to second guess any statements given, or question any one person, but were given so that the next time ANY parent here hears the same or similar information about helmets from their own Drs. that he/she is informed enough to give the Dr. the most current information available. That's not to say that the doctor will listen to it or believe it (having articles might help) -- but at least parents here can be empowered enough to question the information that is given to them.... and if any of us didn't happen to have current information when our babies were newborns (like the importance of tummy time, or varying the side of the head the baby sleeps), we simply have to LET GO of any guilt we may feel, and move ahead from today.... one step at a time. For guilt and anger can lead to some very powerful negative effects on our own physical and mental health.... I know this is a lot to try and do. I can't say I do it every day. Being able to vent a little here helps us all, I think. Together we can try and be supportive no matter what kind of mood these myriad issues bring to us on a given day.... can't we? Much peace. (a.k.a. "Kali") Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 -- Very well said ! - In Plagiocephalyegroups, " Kali " <tnt@i...> wrote: > Every person does what is best for their situation and experience.... I > don't feel that there has been a competition here between helmet or band -- > and Christi is right -- if a parent is coming here for support, this simply > SHOULDN'T be what is debated... > > I feel that everyone here wants to help their baby --- through whatever > means necessary. This is a matter of education (sometimes parents educating > doctors, sometimes drs. educating parents), of knowing options, of making > choices. Of standing up for what we know can be changed, and being heard. > > Many of us feel frustrated because more information wasn't given to us when > we wanted it or needed it. > > We should all be PROUD that we are doing something pro-active to help our > children. There is a lot of frustration out there dealing with insurance > and Drs. who don't want us to tell them how to treat patients (which is what > it sort of comes down to). Some parents here are dealing with other > physical problems other than plagiocephaly, and don't know if the > plagiocephaly is the cause or if it is " just one more thing to worry about. " > > I truly hope that no one feels that he/she is being questioned HERE for the > type of treatment he/she has chosen for their child. If so, we are doing as > great a disservice to these parents as some of us feel our Dr.s have treated > us, and then some. > > I feel that the FDA statements and links about the DOC band, etc. weren't > meant to second guess any statements given, or question any one person, but > were given so that the next time ANY parent here hears the same or similar > information about helmets from their own Drs. that he/she is informed enough > to give the Dr. the most current information available. That's not to say > that the doctor will listen to it or believe it (having articles might > help) -- but at least parents here can be empowered enough to question the > information that is given to them.... and if any of us didn't happen to > have current information when our babies were newborns (like the importance > of tummy time, or varying the side of the head the baby sleeps), we simply > have to LET GO of any guilt we may feel, and move ahead from today.... one > step at a time. For guilt and anger can lead to some very powerful negative > effects on our own physical and mental health.... > > I know this is a lot to try and do. I can't say I do it every day. Being > able to vent a little here helps us all, I think. Together we can try and > be supportive no matter what kind of mood these myriad issues bring to us on > a given day.... can't we? > > Much peace. > > (a.k.a. " Kali " ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 ... BRAVO and THANK YOU!!!! :-) :-) :-) :-) :-) Polly > Every person does what is best for their situation and experience.... I > don't feel that there has been a competition here between helmet or band -- > and Christi is right -- if a parent is coming here for support, this simply > SHOULDN'T be what is debated... > > I feel that everyone here wants to help their baby --- through whatever > means necessary. This is a matter of education (sometimes parents educating > doctors, sometimes drs. educating parents), of knowing options, of making > choices. Of standing up for what we know can be changed, and being heard. > > Many of us feel frustrated because more information wasn't given to us when > we wanted it or needed it. > > We should all be PROUD that we are doing something pro-active to help our > children. There is a lot of frustration out there dealing with insurance > and Drs. who don't want us to tell them how to treat patients (which is what > it sort of comes down to). Some parents here are dealing with other > physical problems other than plagiocephaly, and don't know if the > plagiocephaly is the cause or if it is " just one more thing to worry about. " > > I truly hope that no one feels that he/she is being questioned HERE for the > type of treatment he/she has chosen for their child. If so, we are doing as > great a disservice to these parents as some of us feel our Dr.s have treated > us, and then some. > > I feel that the FDA statements and links about the DOC band, etc. weren't > meant to second guess any statements given, or question any one person, but > were given so that the next time ANY parent here hears the same or similar > information about helmets from their own Drs. that he/she is informed enough > to give the Dr. the most current information available. That's not to say > that the doctor will listen to it or believe it (having articles might > help) -- but at least parents here can be empowered enough to question the > information that is given to them.... and if any of us didn't happen to > have current information when our babies were newborns (like the importance > of tummy time, or varying the side of the head the baby sleeps), we simply > have to LET GO of any guilt we may feel, and move ahead from today.... one > step at a time. For guilt and anger can lead to some very powerful negative > effects on our own physical and mental health.... > > I know this is a lot to try and do. I can't say I do it every day. Being > able to vent a little here helps us all, I think. Together we can try and > be supportive no matter what kind of mood these myriad issues bring to us on > a given day.... can't we? > > Much peace. > > (a.k.a. " Kali " ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 The study was done by Moss ...see www.neurosurgery.org/journals/online. Stuart -----Original Message----- From: rmissirian@... [mailto:rmissirian@...] Sent: Wednesday, April 19, 2000 3:08 PM Plagiocephalyegroups Subject: Re: bands, helmets and the FDA By the way do you anything about this study of 300 kids and how half were left to nature and half were fitted with devices? Supposed these mild to moderate kids all turned out the same. I couldn't find it in the Links. Judy ------------------------------------------------------------------------ Tradiant is creating the premier marketplace for shippers and carriers as well as a comprehensive family of e-commerce solutions that give transportation companies the competitive edge. Visit Tradiant today. 1/3395/3/_/689409/_/956174909/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Glad to see you made it over here, Stuart! Kendra "Blake, Stuart" wrote: The study was done by Moss ...see www.neurosurgery.org/journals/online. Stuart -----Original Message----- From: rmissirian@... [mailto:rmissirian@...] Sent: Wednesday, April 19, 2000 3:08 PM Plagiocephalyegroups Subject: Re: bands, helmets and the FDA By the way do you anything about this study of 300 kids and how half were left to nature and half were fitted with devices? Supposed these mild to moderate kids all turned out the same. I couldn't find it in the Links. Judy ------------------------------------------------------------------------ Tradiant is creating the premier marketplace for shippers and carriers as well as a comprehensive family of e-commerce solutions that give transportation companies the competitive edge. Visit Tradiant today. 1/3395/3/_/689409/_/956174909/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 christi You are doing the right thing for your child if you are doing it out of love- - trust yourself. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Thank you, thank you, Stuart. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Stuart When I typed in www.neurosurgery.org/journals/online I came up with nothing. Can you help? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Http Error 404? That is what I get. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Judy, go to the neurosurgery.org website, find the journal, then click on archives - I had to dig around a bit, but I finally found it. >>> <rmissirian@...> 04/20/00 03:04PM >>> Stuart When I typed in www.neurosurgery.org/journals/online I came up with nothing. Can you help? Judy ------------------------------------------------------------------------ Enjoy the award-winning journalism of The New York Times with convenient home delivery. And for a limited time, get 50% off for the first 8 weeks by subscribing. Pay by credit card and receive an additional 4 weeks at this low introductory rate. 1/3102/3/_/689409/_/956268294/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Here, I'll be a little more helpful: http://www.neurosurgery.org/focus/index.html After you click on that link, click on " Archives " and you will find the article about 3/4 of the way down the page at Vol.2, Issue 2. >>> " Semke " <kgsemke@...> 04/20/00 03:41PM >>> Judy, go to the neurosurgery.org website, find the journal, then click on archives - I had to dig around a bit, but I finally found it. >>> <rmissirian@...> 04/20/00 03:04PM >>> Stuart When I typed in www.neurosurgery.org/journals/online I came up with nothing. Can you help? Judy ------------------------------------------------------------------------ Enjoy the award-winning journalism of The New York Times with convenient home delivery. And for a limited time, get 50% off for the first 8 weeks by subscribing. Pay by credit card and receive an additional 4 weeks at this low introductory rate. 1/3102/3/_/689409/_/956268294/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Christi-Big Hug! It does seem to get competitive...doc band vs. helmet. We were only offered the doc band. Everyone is right, the Drs prescribe what they are familiar with AND we all are limited by clinic proximity. We all deserve credit just for getting our babies the treatment they need, and not turning a blind eye to their condition & listening to the lame drs and insurance carriers:)! Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Thanks. Judy Quote Link to comment Share on other sites More sharing options...
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