Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Diane, Who so far have you asked for a script? Also where do live? Perhaps if someone lives near you, they can refer you to someone. Also when you do get a script, make sure that the doctor writes DAW in the box at the bottom. (dispense as written) also include " no substitutions " at the bottom. Not sure if that was what did the trick for me winning my appeal, but it certainly won't hurt...... Keep at it, you will find someone. Also look up plagiocephaly.org, they have a section of plagio-friendly doctors. Good luck! Jill (Accord, NY) --- " Diane, Nick, & Andy " <nickandy@...> wrote: > Hi, what do you do if noone will write a > prescription? do you go to a diff city > and start looking there? does CT have doctors that > will write one? I dont' > really notice his ears being off, though have been > told they are. and I > woudln't mind if people pointed out the head being > diff than his brothers, > because that is better than seeing how their faces > are so different. there's no > problem finding things wrong with andy's face to > tell them apart. he has it > all..whether from the plagio or the tort.. the eye > fold, bulgy cheek, slanted > jaw, off center nose, flattened cheek on other side, > and bulgy forehead. > sometimes I cover up the smaller side of his face in > pics and see how much he'd > look like his brother then. diane > > msluck wrote: > > > Diane: > > I wanted to jump in because I also have twins > (identical) and only one > > needed the DOC band. He has tort that started by > poor positioning inutero, > > preemie birth, NICU time, etc. We went with our > ped's recommendation of " it > > will round out on its own " up to 7 months and then > I saw an article by CT in > > TWINS magazine about the band. I went around our > ped and found a specialist > > who would write the Rx for the band. > > > > We live in Cleveland and traveled to Chicago (6hr > drive, 1 hr flight) for > > his treatment this summer. It took 4 1/2 months, > many plane trips, but was > > SO worth the effort. We got about 95% correction > and I am so glad we did > > it. It seems like so long ago! > > > > We chose to fly (cheap fares, easier day) and so I > only took . > > and his two sisters stayed at home. > Luckily we have wonderful > > family to help out. > > > > I totally understand your wanting your identicals > to look alike. People are > > always looking for that one small detail to tell > the boys apart - I didn't > > want 's head or ears to be the thing > people pointed out. > > > > I hope you can find someone to support your desire > to treat your son. The > > trips to CT may not be fun, but you can make the > best out of them. I found > > the CT staff in Chicago to be wonderful. > > > > Best of luck, > > Sue Luck > > mom to , DOC band graduate > > ----- Original Message ----- > > From: Diane, Nick, & Andy <nickandy@...> > > <Plagiocephalyegroups> > > Sent: Sunday, December 31, 2000 7:25 PM > > Subject: Hi Jill > > > > > Hi Jill, the closest cranial tech center for us > is 3 1/2 hours drive. do > > you > > > take his twin a long? are they fraternal or > identical? mine are > > identical > > > though you'd never really know it. it's really > strange but when andy's > > hair > > > was short when he was younger and when it's wet, > you can't really tell, > > but > > > now his hair's longer it makes his head look > even worse. what's with > > that?? > > > it seems his hair won't comb " right " and is part > is on the opposite side > > of > > > his twin. maybe mirror image twins, but probably > because of his flat spot. > > > so most of his hair sort of cowlicks over the > bulgier side making look > > even > > > more eliptical than it is. we just never really > noticed his flat spot > > > though the whole right side is pretty flat when > you feel around. I think > > my > > > guy was also born with it. he was wedged down > in my pelvis for a very > > long > > > time and caused me great pain. I knew it had to > be doing something to him > > > because I hurt so badly. I'm just glad he's not > braindamaged! diane > > > > > > Jill wrote: > > > > > > > Diane, > > > > Sorry to butt in, but I had to! I strongly > disagree > > > > with the statement from one of the doctors you > saw > > > > that said Andy is too old. My son Josh is 21 > months > > > > old and got his DOC Band when he was 19 months > old. > > > > He is one of twins and was born with tort and > plagio. > > > > We have seen quite an improvement with his > head shape > > > > already, not so much with the facial > asymetery, but I > > > > think that too will improve. He will have to > wear it > > > > longer but hey that's ok! Perhaps he was > talking about > > > > a pasive helmet, one that Andy would have to > grow > > > > into. I believe he would not be a good > candidate for > > > > that kind. But a helmet or band that applies > pressure > > > > would be a benefit. If you go to > plagiocephaly.org > > > > there is an article there on treating the > older child. > > > > There are 3 successful case studies. Maybe > you can > > > > print it and take it with you to show the next > one. > > > > Just a thought, there is hope, I have living > proof > > > > of that! Hang in there...... > > > > > > > > Good luck, > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > --- " Diane, Nick, & Andy " > <nickandy@...> > > > > wrote: > > > > > Hi, yes of course! The doctors I've tried > are Dr. > > > > > > > > > > (orthopaedist) whose own daughter had > plagiocephaly > > > > > without torticollis, > > > > > and they didn't treat her. he says she's 3 > now and > > > > > " fine " . It caused > > > > > great stress for his wife, however, as he > puts it. > > > > > He is optimistic andy > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > (neurologist) thinks Andy's > > > > > assymetries, head and face, were all done in > utero > > > > > and will never > > > > > change, except maybe his head over many many > years > > > > > OR his hair will grow > > > > > to cover up the flat side. Dr. > > > > > (neurosurgeon) thinks it's > > > > > positional plagiocephaly and Andy should > have been > > > > > repositioned since > > > > > birth and since he wasn't, then it's too > late to > > > > > help him. And angrily > > > > > added that the DOC bands are franchised like > > > > > mcdonald's so he couldn't > > > > > hlep me if he wanted to, and that Andy is > too old > > > > > for a helmet (he's 18 > > > > > months) even if he did helmets. Seems he > really only > > > > > sees and deals with > > > > > cs kids and could only offer us a ct scan to > make > > > > > sure Andy doesn't > > > > > have that going on, though he said from his > ear > > > > > positioning and facial > > > > > assymetry it doesn't appear to be cs, so we > forwent > > > > > the ct scan. any > > > > > opinons on that? thanks always,, diane, > nick and > > > > > andy. > > > > > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 I've asked all the pediatric specialists in austin tx. orthopaedist, neurosurgeon, neurologist. there are a lot of pediatric specialists in my city. diane Jill wrote: > Diane, > Who so far have you asked for a script? Also where > do live? Perhaps if someone lives near you, they can > refer you to someone. > Also when you do get a script, make sure that the > doctor writes DAW in the box at the bottom. (dispense > as written) also include " no substitutions " at the > bottom. Not sure if that was what did the trick for > me winning my appeal, but it certainly won't > hurt...... > Keep at it, you will find someone. Also look up > plagiocephaly.org, they have a section of > plagio-friendly doctors. > > Good luck! > Jill (Accord, NY) > --- " Diane, Nick, & Andy " <nickandy@...> > wrote: > > Hi, what do you do if noone will write a > > prescription? do you go to a diff city > > and start looking there? does CT have doctors that > > will write one? I dont' > > really notice his ears being off, though have been > > told they are. and I > > woudln't mind if people pointed out the head being > > diff than his brothers, > > because that is better than seeing how their faces > > are so different. there's no > > problem finding things wrong with andy's face to > > tell them apart. he has it > > all..whether from the plagio or the tort.. the eye > > fold, bulgy cheek, slanted > > jaw, off center nose, flattened cheek on other side, > > and bulgy forehead. > > sometimes I cover up the smaller side of his face in > > pics and see how much he'd > > look like his brother then. diane > > > > msluck wrote: > > > > > Diane: > > > I wanted to jump in because I also have twins > > (identical) and only one > > > needed the DOC band. He has tort that started by > > poor positioning inutero, > > > preemie birth, NICU time, etc. We went with our > > ped's recommendation of " it > > > will round out on its own " up to 7 months and then > > I saw an article by CT in > > > TWINS magazine about the band. I went around our > > ped and found a specialist > > > who would write the Rx for the band. > > > > > > We live in Cleveland and traveled to Chicago (6hr > > drive, 1 hr flight) for > > > his treatment this summer. It took 4 1/2 months, > > many plane trips, but was > > > SO worth the effort. We got about 95% correction > > and I am so glad we did > > > it. It seems like so long ago! > > > > > > We chose to fly (cheap fares, easier day) and so I > > only took . > > > and his two sisters stayed at home. > > Luckily we have wonderful > > > family to help out. > > > > > > I totally understand your wanting your identicals > > to look alike. People are > > > always looking for that one small detail to tell > > the boys apart - I didn't > > > want 's head or ears to be the thing > > people pointed out. > > > > > > I hope you can find someone to support your desire > > to treat your son. The > > > trips to CT may not be fun, but you can make the > > best out of them. I found > > > the CT staff in Chicago to be wonderful. > > > > > > Best of luck, > > > Sue Luck > > > mom to , DOC band graduate > > > ----- Original Message ----- > > > From: Diane, Nick, & Andy <nickandy@...> > > > <Plagiocephalyegroups> > > > Sent: Sunday, December 31, 2000 7:25 PM > > > Subject: Hi Jill > > > > > > > Hi Jill, the closest cranial tech center for us > > is 3 1/2 hours drive. do > > > you > > > > take his twin a long? are they fraternal or > > identical? mine are > > > identical > > > > though you'd never really know it. it's really > > strange but when andy's > > > hair > > > > was short when he was younger and when it's wet, > > you can't really tell, > > > but > > > > now his hair's longer it makes his head look > > even worse. what's with > > > that?? > > > > it seems his hair won't comb " right " and is part > > is on the opposite side > > > of > > > > his twin. maybe mirror image twins, but probably > > because of his flat spot. > > > > so most of his hair sort of cowlicks over the > > bulgier side making look > > > even > > > > more eliptical than it is. we just never really > > noticed his flat spot > > > > though the whole right side is pretty flat when > > you feel around. I think > > > my > > > > guy was also born with it. he was wedged down > > in my pelvis for a very > > > long > > > > time and caused me great pain. I knew it had to > > be doing something to him > > > > because I hurt so badly. I'm just glad he's not > > braindamaged! diane > > > > > > > > Jill wrote: > > > > > > > > > Diane, > > > > > Sorry to butt in, but I had to! I strongly > > disagree > > > > > with the statement from one of the doctors you > > saw > > > > > that said Andy is too old. My son Josh is 21 > > months > > > > > old and got his DOC Band when he was 19 months > > old. > > > > > He is one of twins and was born with tort and > > plagio. > > > > > We have seen quite an improvement with his > > head shape > > > > > already, not so much with the facial > > asymetery, but I > > > > > think that too will improve. He will have to > > wear it > > > > > longer but hey that's ok! Perhaps he was > > talking about > > > > > a pasive helmet, one that Andy would have to > > grow > > > > > into. I believe he would not be a good > > candidate for > > > > > that kind. But a helmet or band that applies > > pressure > > > > > would be a benefit. If you go to > > plagiocephaly.org > > > > > there is an article there on treating the > > older child. > > > > > There are 3 successful case studies. Maybe > > you can > > > > > print it and take it with you to show the next > > one. > > > > > Just a thought, there is hope, I have living > > proof > > > > > of that! Hang in there...... > > > > > > > > > > Good luck, > > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > > > --- " Diane, Nick, & Andy " > > <nickandy@...> > > > > > wrote: > > > > > > Hi, yes of course! The doctors I've tried > > are Dr. > > > > > > > > > > > > (orthopaedist) whose own daughter had > > plagiocephaly > > > > > > without torticollis, > > > > > > and they didn't treat her. he says she's 3 > > now and > > > > > > " fine " . It caused > > > > > > great stress for his wife, however, as he > > puts it. > > > > > > He is optimistic andy > > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > > (neurologist) thinks Andy's > > > > > > assymetries, head and face, were all done in > > utero > > > > > > and will never > > > > > > change, except maybe his head over many many > > years > > > > > > OR his hair will grow > > > > > > to cover up the flat side. Dr. > > > > > > (neurosurgeon) thinks it's > > > > > > positional plagiocephaly and Andy should > > have been > > > > > > repositioned since > > > > > > birth and since he wasn't, then it's too > > late to > > > > > > help him. And angrily > > > > > > added that the DOC bands are franchised like > > > > > > mcdonald's so he couldn't > > > > > > hlep me if he wanted to, and that Andy is > > too old > > > > > > for a helmet (he's 18 > > > > > > months) even if he did helmets. Seems he > > really only > > > > > > sees and deals with > > > > > > cs kids and could only offer us a ct scan to > > make > > > > > > sure Andy doesn't > > > > > > have that going on, though he said from his > > ear > > > > > > positioning and facial > > > > > > assymetry it doesn't appear to be cs, so we > > forwent > > > > > > the ct scan. any > > > > > > opinons on that? thanks always,, diane, > > nick and > > > > > > andy. > > > > > > > > > === message truncated === > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 sorry, I meant there are NOT a lot of ped. specialists. sigh. " Diane, Nick, & Andy " wrote: > I've asked all the pediatric specialists in austin tx. orthopaedist, > neurosurgeon, neurologist. there are a lot of pediatric specialists in > my city. diane > > Jill wrote: > > > Diane, > > Who so far have you asked for a script? Also where > > do live? Perhaps if someone lives near you, they can > > refer you to someone. > > Also when you do get a script, make sure that the > > doctor writes DAW in the box at the bottom. (dispense > > as written) also include " no substitutions " at the > > bottom. Not sure if that was what did the trick for > > me winning my appeal, but it certainly won't > > hurt...... > > Keep at it, you will find someone. Also look up > > plagiocephaly.org, they have a section of > > plagio-friendly doctors. > > > > Good luck! > > Jill (Accord, NY) > > --- " Diane, Nick, & Andy " <nickandy@...> > > wrote: > > > Hi, what do you do if noone will write a > > > prescription? do you go to a diff city > > > and start looking there? does CT have doctors that > > > will write one? I dont' > > > really notice his ears being off, though have been > > > told they are. and I > > > woudln't mind if people pointed out the head being > > > diff than his brothers, > > > because that is better than seeing how their faces > > > are so different. there's no > > > problem finding things wrong with andy's face to > > > tell them apart. he has it > > > all..whether from the plagio or the tort.. the eye > > > fold, bulgy cheek, slanted > > > jaw, off center nose, flattened cheek on other side, > > > and bulgy forehead. > > > sometimes I cover up the smaller side of his face in > > > pics and see how much he'd > > > look like his brother then. diane > > > > > > msluck wrote: > > > > > > > Diane: > > > > I wanted to jump in because I also have twins > > > (identical) and only one > > > > needed the DOC band. He has tort that started by > > > poor positioning inutero, > > > > preemie birth, NICU time, etc. We went with our > > > ped's recommendation of " it > > > > will round out on its own " up to 7 months and then > > > I saw an article by CT in > > > > TWINS magazine about the band. I went around our > > > ped and found a specialist > > > > who would write the Rx for the band. > > > > > > > > We live in Cleveland and traveled to Chicago (6hr > > > drive, 1 hr flight) for > > > > his treatment this summer. It took 4 1/2 months, > > > many plane trips, but was > > > > SO worth the effort. We got about 95% correction > > > and I am so glad we did > > > > it. It seems like so long ago! > > > > > > > > We chose to fly (cheap fares, easier day) and so I > > > only took . > > > > and his two sisters stayed at home. > > > Luckily we have wonderful > > > > family to help out. > > > > > > > > I totally understand your wanting your identicals > > > to look alike. People are > > > > always looking for that one small detail to tell > > > the boys apart - I didn't > > > > want 's head or ears to be the thing > > > people pointed out. > > > > > > > > I hope you can find someone to support your desire > > > to treat your son. The > > > > trips to CT may not be fun, but you can make the > > > best out of them. I found > > > > the CT staff in Chicago to be wonderful. > > > > > > > > Best of luck, > > > > Sue Luck > > > > mom to , DOC band graduate > > > > ----- Original Message ----- > > > > From: Diane, Nick, & Andy <nickandy@...> > > > > <Plagiocephalyegroups> > > > > Sent: Sunday, December 31, 2000 7:25 PM > > > > Subject: Hi Jill > > > > > > > > > Hi Jill, the closest cranial tech center for us > > > is 3 1/2 hours drive. do > > > > you > > > > > take his twin a long? are they fraternal or > > > identical? mine are > > > > identical > > > > > though you'd never really know it. it's really > > > strange but when andy's > > > > hair > > > > > was short when he was younger and when it's wet, > > > you can't really tell, > > > > but > > > > > now his hair's longer it makes his head look > > > even worse. what's with > > > > that?? > > > > > it seems his hair won't comb " right " and is part > > > is on the opposite side > > > > of > > > > > his twin. maybe mirror image twins, but probably > > > because of his flat spot. > > > > > so most of his hair sort of cowlicks over the > > > bulgier side making look > > > > even > > > > > more eliptical than it is. we just never really > > > noticed his flat spot > > > > > though the whole right side is pretty flat when > > > you feel around. I think > > > > my > > > > > guy was also born with it. he was wedged down > > > in my pelvis for a very > > > > long > > > > > time and caused me great pain. I knew it had to > > > be doing something to him > > > > > because I hurt so badly. I'm just glad he's not > > > braindamaged! diane > > > > > > > > > > Jill wrote: > > > > > > > > > > > Diane, > > > > > > Sorry to butt in, but I had to! I strongly > > > disagree > > > > > > with the statement from one of the doctors you > > > saw > > > > > > that said Andy is too old. My son Josh is 21 > > > months > > > > > > old and got his DOC Band when he was 19 months > > > old. > > > > > > He is one of twins and was born with tort and > > > plagio. > > > > > > We have seen quite an improvement with his > > > head shape > > > > > > already, not so much with the facial > > > asymetery, but I > > > > > > think that too will improve. He will have to > > > wear it > > > > > > longer but hey that's ok! Perhaps he was > > > talking about > > > > > > a pasive helmet, one that Andy would have to > > > grow > > > > > > into. I believe he would not be a good > > > candidate for > > > > > > that kind. But a helmet or band that applies > > > pressure > > > > > > would be a benefit. If you go to > > > plagiocephaly.org > > > > > > there is an article there on treating the > > > older child. > > > > > > There are 3 successful case studies. Maybe > > > you can > > > > > > print it and take it with you to show the next > > > one. > > > > > > Just a thought, there is hope, I have living > > > proof > > > > > > of that! Hang in there...... > > > > > > > > > > > > Good luck, > > > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > > > > > --- " Diane, Nick, & Andy " > > > <nickandy@...> > > > > > > wrote: > > > > > > > Hi, yes of course! The doctors I've tried > > > are Dr. > > > > > > > > > > > > > > (orthopaedist) whose own daughter had > > > plagiocephaly > > > > > > > without torticollis, > > > > > > > and they didn't treat her. he says she's 3 > > > now and > > > > > > > " fine " . It caused > > > > > > > great stress for his wife, however, as he > > > puts it. > > > > > > > He is optimistic andy > > > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > > > (neurologist) thinks Andy's > > > > > > > assymetries, head and face, were all done in > > > utero > > > > > > > and will never > > > > > > > change, except maybe his head over many many > > > years > > > > > > > OR his hair will grow > > > > > > > to cover up the flat side. Dr. > > > > > > > (neurosurgeon) thinks it's > > > > > > > positional plagiocephaly and Andy should > > > have been > > > > > > > repositioned since > > > > > > > birth and since he wasn't, then it's too > > > late to > > > > > > > help him. And angrily > > > > > > > added that the DOC bands are franchised like > > > > > > > mcdonald's so he couldn't > > > > > > > hlep me if he wanted to, and that Andy is > > > too old > > > > > > > for a helmet (he's 18 > > > > > > > months) even if he did helmets. Seems he > > > really only > > > > > > > sees and deals with > > > > > > > cs kids and could only offer us a ct scan to > > > make > > > > > > > sure Andy doesn't > > > > > > > have that going on, though he said from his > > > ear > > > > > > > positioning and facial > > > > > > > assymetry it doesn't appear to be cs, so we > > > forwent > > > > > > > the ct scan. any > > > > > > > opinons on that? thanks always,, diane, > > > nick and > > > > > > > andy. > > > > > > > > > > > > === message truncated === > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 I looked on the CT site for doctors that are familiar with the band. Since there were none in my city and we would have to travel to Chicago for the closest clinic, I contacted one of the listed doctors in Chicago and explained my situation. At that point, I already had a diagnosis of plagio, x-rays to rule out craniosysostois and an RX for the local helmet. All I wanted was a consultation and an RX for the DOC band. The nurse listened, agreed to help and made the appointment. We traveled to Chicago for a morning appointment with the specialist and an afternoon casting at CT. It worked perfectly. At the end of the treatment, the doctor wanted to see us to document progress. Those were the only two times I saw him. Sue Luck mom to , DOC band graduate Cleveland, OH ----- Original Message ----- From: Diane, Nick, & Andy <nickandy@...> <Plagiocephalyegroups> Sent: Wednesday, January 03, 2001 2:43 PM Subject: how to get a scrip??? > Hi, what do you do if noone will write a prescription? do you go to a diff city > and start looking there? does CT have doctors that will write one? I dont' > really notice his ears being off, though have been told they are. and I > woudln't mind if people pointed out the head being diff than his brothers, > because that is better than seeing how their faces are so different. there's no > problem finding things wrong with andy's face to tell them apart. he has it > all..whether from the plagio or the tort.. the eye fold, bulgy cheek, slanted > jaw, off center nose, flattened cheek on other side, and bulgy forehead. > sometimes I cover up the smaller side of his face in pics and see how much he'd > look like his brother then. diane > > msluck wrote: > > > Diane: > > I wanted to jump in because I also have twins (identical) and only one > > needed the DOC band. He has tort that started by poor positioning inutero, > > preemie birth, NICU time, etc. We went with our ped's recommendation of " it > > will round out on its own " up to 7 months and then I saw an article by CT in > > TWINS magazine about the band. I went around our ped and found a specialist > > who would write the Rx for the band. > > > > We live in Cleveland and traveled to Chicago (6hr drive, 1 hr flight) for > > his treatment this summer. It took 4 1/2 months, many plane trips, but was > > SO worth the effort. We got about 95% correction and I am so glad we did > > it. It seems like so long ago! > > > > We chose to fly (cheap fares, easier day) and so I only took . > > and his two sisters stayed at home. Luckily we have wonderful > > family to help out. > > > > I totally understand your wanting your identicals to look alike. People are > > always looking for that one small detail to tell the boys apart - I didn't > > want 's head or ears to be the thing people pointed out. > > > > I hope you can find someone to support your desire to treat your son. The > > trips to CT may not be fun, but you can make the best out of them. I found > > the CT staff in Chicago to be wonderful. > > > > Best of luck, > > Sue Luck > > mom to , DOC band graduate > > ----- Original Message ----- > > From: Diane, Nick, & Andy <nickandy@...> > > <Plagiocephalyegroups> > > Sent: Sunday, December 31, 2000 7:25 PM > > Subject: Hi Jill > > > > > Hi Jill, the closest cranial tech center for us is 3 1/2 hours drive. do > > you > > > take his twin a long? are they fraternal or identical? mine are > > identical > > > though you'd never really know it. it's really strange but when andy's > > hair > > > was short when he was younger and when it's wet, you can't really tell, > > but > > > now his hair's longer it makes his head look even worse. what's with > > that?? > > > it seems his hair won't comb " right " and is part is on the opposite side > > of > > > his twin. maybe mirror image twins, but probably because of his flat spot. > > > so most of his hair sort of cowlicks over the bulgier side making look > > even > > > more eliptical than it is. we just never really noticed his flat spot > > > though the whole right side is pretty flat when you feel around. I think > > my > > > guy was also born with it. he was wedged down in my pelvis for a very > > long > > > time and caused me great pain. I knew it had to be doing something to him > > > because I hurt so badly. I'm just glad he's not braindamaged! diane > > > > > > Jill wrote: > > > > > > > Diane, > > > > Sorry to butt in, but I had to! I strongly disagree > > > > with the statement from one of the doctors you saw > > > > that said Andy is too old. My son Josh is 21 months > > > > old and got his DOC Band when he was 19 months old. > > > > He is one of twins and was born with tort and plagio. > > > > We have seen quite an improvement with his head shape > > > > already, not so much with the facial asymetery, but I > > > > think that too will improve. He will have to wear it > > > > longer but hey that's ok! Perhaps he was talking about > > > > a pasive helmet, one that Andy would have to grow > > > > into. I believe he would not be a good candidate for > > > > that kind. But a helmet or band that applies pressure > > > > would be a benefit. If you go to plagiocephaly.org > > > > there is an article there on treating the older child. > > > > There are 3 successful case studies. Maybe you can > > > > print it and take it with you to show the next one. > > > > Just a thought, there is hope, I have living proof > > > > of that! Hang in there...... > > > > > > > > Good luck, > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > --- " Diane, Nick, & Andy " <nickandy@...> > > > > wrote: > > > > > Hi, yes of course! The doctors I've tried are Dr. > > > > > > > > > > (orthopaedist) whose own daughter had plagiocephaly > > > > > without torticollis, > > > > > and they didn't treat her. he says she's 3 now and > > > > > " fine " . It caused > > > > > great stress for his wife, however, as he puts it. > > > > > He is optimistic andy > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > (neurologist) thinks Andy's > > > > > assymetries, head and face, were all done in utero > > > > > and will never > > > > > change, except maybe his head over many many years > > > > > OR his hair will grow > > > > > to cover up the flat side. Dr. > > > > > (neurosurgeon) thinks it's > > > > > positional plagiocephaly and Andy should have been > > > > > repositioned since > > > > > birth and since he wasn't, then it's too late to > > > > > help him. And angrily > > > > > added that the DOC bands are franchised like > > > > > mcdonald's so he couldn't > > > > > hlep me if he wanted to, and that Andy is too old > > > > > for a helmet (he's 18 > > > > > months) even if he did helmets. Seems he really only > > > > > sees and deals with > > > > > cs kids and could only offer us a ct scan to make > > > > > sure Andy doesn't > > > > > have that going on, though he said from his ear > > > > > positioning and facial > > > > > assymetry it doesn't appear to be cs, so we forwent > > > > > the ct scan. any > > > > > opinons on that? thanks always,, diane, nick and > > > > > andy. > > > > > > > > > > bgles2@... wrote: > > > > > > > > > > > Diane, I have a cousin in Austin who's > > > > > roommate is a Dr. Should I > > > > > > try him > > > > > > and see if he knows of anyone in area who may use > > > > > helemts/bands? Let > > > > > > me > > > > > > know? Belinda > > > > > > eGroups Sponsor > > > > > [Click Here!] > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Diane, We go to The Woodlands for the DOC Band. I remember being there once and there was a mother from Austin. Also, I do know that Bob Cook, the Orthotist keeps on file the name of the referring physician. Perhaps you could call him and see if he could tell you the Dr. name that referred that particular patient. I don't know her name (the mother) but I do remember that she had a little boy in the Band. I know confidentiality would probably prevent him from giving you her name but perhaps he could give your name to her and ask that she call you! I hope this helps! (Hunter's mom) Baton Rouge, LA -----Original Message----- From: Diane, Nick, & Andy [sMTP:nickandy@...] Sent: Wednesday, January 03, 2001 2:14 PM Plagiocephalyegroups Subject: Re: how to get a scrip??? sorry, I meant there are NOT a lot of ped. specialists. sigh. " Diane, Nick, & Andy " wrote: > I've asked all the pediatric specialists in austin tx. orthopaedist, > neurosurgeon, neurologist. there are a lot of pediatric specialists in > my city. diane > > Jill wrote: > > > Diane, > > Who so far have you asked for a script? Also where > > do live? Perhaps if someone lives near you, they can > > refer you to someone. > > Also when you do get a script, make sure that the > > doctor writes DAW in the box at the bottom. (dispense > > as written) also include " no substitutions " at the > > bottom. Not sure if that was what did the trick for > > me winning my appeal, but it certainly won't > > hurt...... > > Keep at it, you will find someone. Also look up > > plagiocephaly.org, they have a section of > > plagio-friendly doctors. > > > > Good luck! > > Jill (Accord, NY) > > --- " Diane, Nick, & Andy " <nickandy@...> > > wrote: > > > Hi, what do you do if noone will write a > > > prescription? do you go to a diff city > > > and start looking there? does CT have doctors that > > > will write one? I dont' > > > really notice his ears being off, though have been > > > told they are. and I > > > woudln't mind if people pointed out the head being > > > diff than his brothers, > > > because that is better than seeing how their faces > > > are so different. there's no > > > problem finding things wrong with andy's face to > > > tell them apart. he has it > > > all..whether from the plagio or the tort.. the eye > > > fold, bulgy cheek, slanted > > > jaw, off center nose, flattened cheek on other side, > > > and bulgy forehead. > > > sometimes I cover up the smaller side of his face in > > > pics and see how much he'd > > > look like his brother then. diane > > > > > > msluck wrote: > > > > > > > Diane: > > > > I wanted to jump in because I also have twins > > > (identical) and only one > > > > needed the DOC band. He has tort that started by > > > poor positioning inutero, > > > > preemie birth, NICU time, etc. We went with our > > > ped's recommendation of " it > > > > will round out on its own " up to 7 months and then > > > I saw an article by CT in > > > > TWINS magazine about the band. I went around our > > > ped and found a specialist > > > > who would write the Rx for the band. > > > > > > > > We live in Cleveland and traveled to Chicago (6hr > > > drive, 1 hr flight) for > > > > his treatment this summer. It took 4 1/2 months, > > > many plane trips, but was > > > > SO worth the effort. We got about 95% correction > > > and I am so glad we did > > > > it. It seems like so long ago! > > > > > > > > We chose to fly (cheap fares, easier day) and so I > > > only took . > > > > and his two sisters stayed at home. > > > Luckily we have wonderful > > > > family to help out. > > > > > > > > I totally understand your wanting your identicals > > > to look alike. People are > > > > always looking for that one small detail to tell > > > the boys apart - I didn't > > > > want 's head or ears to be the thing > > > people pointed out. > > > > > > > > I hope you can find someone to support your desire > > > to treat your son. The > > > > trips to CT may not be fun, but you can make the > > > best out of them. I found > > > > the CT staff in Chicago to be wonderful. > > > > > > > > Best of luck, > > > > Sue Luck > > > > mom to , DOC band graduate > > > > ----- Original Message ----- > > > > From: Diane, Nick, & Andy <nickandy@...> > > > > <Plagiocephalyegroups> > > > > Sent: Sunday, December 31, 2000 7:25 PM > > > > Subject: Hi Jill > > > > > > > > > Hi Jill, the closest cranial tech center for us > > > is 3 1/2 hours drive. do > > > > you > > > > > take his twin a long? are they fraternal or > > > identical? mine are > > > > identical > > > > > though you'd never really know it. it's really > > > strange but when andy's > > > > hair > > > > > was short when he was younger and when it's wet, > > > you can't really tell, > > > > but > > > > > now his hair's longer it makes his head look > > > even worse. what's with > > > > that?? > > > > > it seems his hair won't comb " right " and is part > > > is on the opposite side > > > > of > > > > > his twin. maybe mirror image twins, but probably > > > because of his flat spot. > > > > > so most of his hair sort of cowlicks over the > > > bulgier side making look > > > > even > > > > > more eliptical than it is. we just never really > > > noticed his flat spot > > > > > though the whole right side is pretty flat when > > > you feel around. I think > > > > my > > > > > guy was also born with it. he was wedged down > > > in my pelvis for a very > > > > long > > > > > time and caused me great pain. I knew it had to > > > be doing something to him > > > > > because I hurt so badly. I'm just glad he's not > > > braindamaged! diane > > > > > > > > > > Jill wrote: > > > > > > > > > > > Diane, > > > > > > Sorry to butt in, but I had to! I strongly > > > disagree > > > > > > with the statement from one of the doctors you > > > saw > > > > > > that said Andy is too old. My son Josh is 21 > > > months > > > > > > old and got his DOC Band when he was 19 months > > > old. > > > > > > He is one of twins and was born with tort and > > > plagio. > > > > > > We have seen quite an improvement with his > > > head shape > > > > > > already, not so much with the facial > > > asymetery, but I > > > > > > think that too will improve. He will have to > > > wear it > > > > > > longer but hey that's ok! Perhaps he was > > > talking about > > > > > > a pasive helmet, one that Andy would have to > > > grow > > > > > > into. I believe he would not be a good > > > candidate for > > > > > > that kind. But a helmet or band that applies > > > pressure > > > > > > would be a benefit. If you go to > > > plagiocephaly.org > > > > > > there is an article there on treating the > > > older child. > > > > > > There are 3 successful case studies. Maybe > > > you can > > > > > > print it and take it with you to show the next > > > one. > > > > > > Just a thought, there is hope, I have living > > > proof > > > > > > of that! Hang in there...... > > > > > > > > > > > > Good luck, > > > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > > > > > --- " Diane, Nick, & Andy " > > > <nickandy@...> > > > > > > wrote: > > > > > > > Hi, yes of course! The doctors I've tried > > > are Dr. > > > > > > > > > > > > > > (orthopaedist) whose own daughter had > > > plagiocephaly > > > > > > > without torticollis, > > > > > > > and they didn't treat her. he says she's 3 > > > now and > > > > > > > " fine " . It caused > > > > > > > great stress for his wife, however, as he > > > puts it. > > > > > > > He is optimistic andy > > > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > > > (neurologist) thinks Andy's > > > > > > > assymetries, head and face, were all done in > > > utero > > > > > > > and will never > > > > > > > change, except maybe his head over many many > > > years > > > > > > > OR his hair will grow > > > > > > > to cover up the flat side. Dr. > > > > > > > (neurosurgeon) thinks it's > > > > > > > positional plagiocephaly and Andy should > > > have been > > > > > > > repositioned since > > > > > > > birth and since he wasn't, then it's too > > > late to > > > > > > > help him. And angrily > > > > > > > added that the DOC bands are franchised like > > > > > > > mcdonald's so he couldn't > > > > > > > hlep me if he wanted to, and that Andy is > > > too old > > > > > > > for a helmet (he's 18 > > > > > > > months) even if he did helmets. Seems he > > > really only > > > > > > > sees and deals with > > > > > > > cs kids and could only offer us a ct scan to > > > make > > > > > > > sure Andy doesn't > > > > > > > have that going on, though he said from his > > > ear > > > > > > > positioning and facial > > > > > > > assymetry it doesn't appear to be cs, so we > > > forwent > > > > > > > the ct scan. any > > > > > > > opinons on that? thanks always,, diane, > > > nick and > > > > > > > andy. > > > > > > > > > > > > === message truncated === > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 I went to the Woodlands for my sons DOC band and I have a wonderful pediatric plastic surgeon and neurosurgeon team in Houston. Their names are Dr Teichgraeber and Dr Baumgardner---in the Hermann Professional Building in the medical center. They are very professional and EXCELLENT with children. I had absolutely no problems and they are VERY knowledgeable. The orthotist in the Woodlands, Bob Cook, is probably the nicest, most patient human being I have ever met and he does all the casting and fittings on the children. I know Houston is a 3 hour drive, but these physicians are wonderful! E-mail me if you would like additional info.---we had our casting on the 29th of December and should get our band in any day now! nhendel@... -----Original Message-----From: Cummings-Hall, <tcumming@...>'Plagiocephalyegroups' <Plagiocephalyegroups>Date: Friday, January 05, 2001 8:39 AMSubject: RE: how to get a scrip??? Diane, We go to The Woodlands for the DOC Band. I remember being there once and there was a mother from Austin. Also, I do know that Bob Cook, the Orthotist keeps on file the name of the referring physician. Perhaps you could call him and see if he could tell you the Dr. name that referred that particular patient. I don't know her name (the mother) but I do remember that she had a little boy in the Band. I know confidentiality would probably prevent him from giving you her name but perhaps he could give your name to her and ask that she call you! I hope this helps! (Hunter's mom) Baton Rouge, LA -----Original Message----- From: Diane, Nick, & Andy [sMTP:nickandy@...] Sent: Wednesday, January 03, 2001 2:14 PM Plagiocephalyegroups Subject: Re: how to get a scrip??? sorry, I meant there are NOT a lot of ped. specialists. sigh. " Diane, Nick, & Andy " wrote: > I've asked all the pediatric specialists in austin tx. orthopaedist, > neurosurgeon, neurologist. there are a lot of pediatric specialists in > my city. diane > > Jill wrote: > > > Diane, > > Who so far have you asked for a script? Also where > > do live? Perhaps if someone lives near you, they can > > refer you to someone. > > Also when you do get a script, make sure that the > > doctor writes DAW in the box at the bottom. (dispense > > as written) also include " no substitutions " at the > > bottom. Not sure if that was what did the trick for > > me winning my appeal, but it certainly won't > > hurt...... > > Keep at it, you will find someone. Also look up > > plagiocephaly.org, they have a section of > > plagio-friendly doctors. > > > > Good luck! > > Jill (Accord, NY) > > --- " Diane, Nick, & Andy " <nickandy@...> > > wrote: > > > Hi, what do you do if noone will write a > > > prescription? do you go to a diff city > > > and start looking there? does CT have doctors that > > > will write one? I dont' > > > really notice his ears being off, though have been > > > told they are. and I > > > woudln't mind if people pointed out the head being > > > diff than his brothers, > > > because that is better than seeing how their faces > > > are so different. there's no > > > problem finding things wrong with andy's face to > > > tell them apart. he has it > > > all..whether from the plagio or the tort.. the eye > > > fold, bulgy cheek, slanted > > > jaw, off center nose, flattened cheek on other side, > > > and bulgy forehead. > > > sometimes I cover up the smaller side of his face in > > > pics and see how much he'd > > > look like his brother then. diane > > > > > > msluck wrote: > > > > > > > Diane: > > > > I wanted to jump in because I also have twins > > > (identical) and only one > > > > needed the DOC band. He has tort that started by > > > poor positioning inutero, > > > > preemie birth, NICU time, etc. We went with our > > > ped's recommendation of " it > > > > will round out on its own " up to 7 months and then > > > I saw an article by CT in > > > > TWINS magazine about the band. I went around our > > > ped and found a specialist > > > > who would write the Rx for the band. > > > > > > > > We live in Cleveland and traveled to Chicago (6hr > > > drive, 1 hr flight) for > > > > his treatment this summer. It took 4 1/2 months, > > > many plane trips, but was > > > > SO worth the effort. We got about 95% correction > > > and I am so glad we did > > > > it. It seems like so long ago! > > > > > > > > We chose to fly (cheap fares, easier day) and so I > > > only took . > > > > and his two sisters stayed at home. > > > Luckily we have wonderful > > > > family to help out. > > > > > > > > I totally understand your wanting your identicals > > > to look alike. People are > > > > always looking for that one small detail to tell > > > the boys apart - I didn't > > > > want 's head or ears to be the thing > > > people pointed out. > > > > > > > > I hope you can find someone to support your desire > > > to treat your son. The > > > > trips to CT may not be fun, but you can make the > > > best out of them. I found > > > > the CT staff in Chicago to be wonderful. > > > > > > > > Best of luck, > > > > Sue Luck > > > > mom to , DOC band graduate > > > > ----- Original Message ----- > > > > From: Diane, Nick, & Andy <nickandy@...> > > > > <Plagiocephalyegroups> > > > > Sent: Sunday, December 31, 2000 7:25 PM > > > > Subject: Hi Jill > > > > > > > > > Hi Jill, the closest cranial tech center for us > > > is 3 1/2 hours drive. do > > > > you > > > > > take his twin a long? are they fraternal or > > > identical? mine are > > > > identical > > > > > though you'd never really know it. it's really > > > strange but when andy's > > > > hair > > > > > was short when he was younger and when it's wet, > > > you can't really tell, > > > > but > > > > > now his hair's longer it makes his head look > > > even worse. what's with > > > > that?? > > > > > it seems his hair won't comb " right " and is part > > > is on the opposite side > > > > of > > > > > his twin. maybe mirror image twins, but probably > > > because of his flat spot. > > > > > so most of his hair sort of cowlicks over the > > > bulgier side making look > > > > even > > > > > more eliptical than it is. we just never really > > > noticed his flat spot > > > > > though the whole right side is pretty flat when > > > you feel around. I think > > > > my > > > > > guy was also born with it. he was wedged down > > > in my pelvis for a very > > > > long > > > > > time and caused me great pain. I knew it had to > > > be doing something to him > > > > > because I hurt so badly. I'm just glad he's not > > > braindamaged! diane > > > > > > > > > > Jill wrote: > > > > > > > > > > > Diane, > > > > > > Sorry to butt in, but I had to! I strongly > > > disagree > > > > > > with the statement from one of the doctors you > > > saw > > > > > > that said Andy is too old. My son Josh is 21 > > > months > > > > > > old and got his DOC Band when he was 19 months > > > old. > > > > > > He is one of twins and was born with tort and > > > plagio. > > > > > > We have seen quite an improvement with his > > > head shape > > > > > > already, not so much with the facial > > > asymetery, but I > > > > > > think that too will improve. He will have to > > > wear it > > > > > > longer but hey that's ok! Perhaps he was > > > talking about > > > > > > a pasive helmet, one that Andy would have to > > > grow > > > > > > into. I believe he would not be a good > > > candidate for > > > > > > that kind. But a helmet or band that applies > > > pressure > > > > > > would be a benefit. If you go to > > > plagiocephaly.org > > > > > > there is an article there on treating the > > > older child. > > > > > > There are 3 successful case studies. Maybe > > > you can > > > > > > print it and take it with you to show the next > > > one. > > > > > > Just a thought, there is hope, I have living > > > proof > > > > > > of that! Hang in there...... > > > > > > > > > > > > Good luck, > > > > > > Jill(Mom to Josh & Jarred Accord, NY) > > > > > > > > > > > > --- " Diane, Nick, & Andy " > > > <nickandy@...> > > > > > > wrote: > > > > > > > Hi, yes of course! The doctors I've tried > > > are Dr. > > > > > > > > > > > > > > (orthopaedist) whose own daughter had > > > plagiocephaly > > > > > > > without torticollis, > > > > > > > and they didn't treat her. he says she's 3 > > > now and > > > > > > > " fine " . It caused > > > > > > > great stress for his wife, however, as he > > > puts it. > > > > > > > He is optimistic andy > > > > > > > will outgrow his assymetries. Dr. Ghodsi > > > > > > > (neurologist) thinks Andy's > > > > > > > assymetries, head and face, were all done in > > > utero > > > > > > > and will never > > > > > > > change, except maybe his head over many many > > > years > > > > > > > OR his hair will grow > > > > > > > to cover up the flat side. Dr. > > > > > > > (neurosurgeon) thinks it's > > > > > > > positional plagiocephaly and Andy should > > > have been > > > > > > > repositioned since > > > > > > > birth and since he wasn't, then it's too > > > late to > > > > > > > help him. And angrily > > > > > > > added that the DOC bands are franchised like > > > > > > > mcdonald's so he couldn't > > > > > > > hlep me if he wanted to, and that Andy is > > > too old > > > > > > > for a helmet (he's 18 > > > > > > > months) even if he did helmets. Seems he > > > really only > > > > > > > sees and deals with > > > > > > > cs kids and could only offer us a ct scan to > > > make > > > > > > > sure Andy doesn't > > > > > > > have that going on, though he said from his > > > ear > > > > > > > positioning and facial > > > > > > > assymetry it doesn't appear to be cs, so we > > > forwent > > > > > > > the ct scan. any > > > > > > > opinons on that? thanks always,, diane, > > > nick and > > > > > > > andy. > > > > > > > > > > > > === message truncated === > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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