Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 sorry I know all the doctors I spoke to about my son even at 3- 6 months, the time we spent getting to the point of a DOCband, said that it MAY correct itself but not completely ever. And with your son having tort. and being much older it more than likely would not correct itself. As far as it being cosmetic first of all many insurance companies pay for this and as you know I'm sure insurance companies do not cover cosmetic procedures. There also are many things that permanent untreated plagio. can affect which you listed a few but I've read about vision problems, jaw misalignment and self esteem issues with looking different. So I'd feel really confident in the choice you made to get the DOCband. Has he had improvement in the 2 months? 13 months is not very old not to be walking by the way. All babies are different and probably the tort. has set him back a bit. Do you have a good PT? Sherry Chase (6 months) Tort. DOCband 2/15 : > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 sorry I know all the doctors I spoke to about my son even at 3- 6 months, the time we spent getting to the point of a DOCband, said that it MAY correct itself but not completely ever. And with your son having tort. and being much older it more than likely would not correct itself. As far as it being cosmetic first of all many insurance companies pay for this and as you know I'm sure insurance companies do not cover cosmetic procedures. There also are many things that permanent untreated plagio. can affect which you listed a few but I've read about vision problems, jaw misalignment and self esteem issues with looking different. So I'd feel really confident in the choice you made to get the DOCband. Has he had improvement in the 2 months? 13 months is not very old not to be walking by the way. All babies are different and probably the tort. has set him back a bit. Do you have a good PT? Sherry Chase (6 months) Tort. DOCband 2/15 : > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 , Hi there! I just wanted to say that my father is a Neurologist and I grew up around Neurosurgeons. I can tell you from considerable experience that Neurosurgeons(especially pediatric)aren't known for their people-skills and have massive egos. Yours probably thinks he knows more than a PED, PT and definitely an Orthotist! Let me just say this, having grown up with physicians all around me, I still believe no Dr's opinion takes the place of instinct. When we were posed with whether to band or not, my father said that children's heads round out up til the age of 5yrs. However, depending on the severity, some will always have some flatnes or asymmetry-yes, even my father called it a " cosmetic " issue and nothing to worry about since nobody's face/head is perfect-which is true. He did say that HOW MUCH it will round is entirely different with each case...so it may or may not round out to our(and our children's)liking. That's what makes the decision so difficult, it's so subjective. But my instincts told me that this was something that needed to be addressed...and yours did too. Don't second guess yourself because of this one Dr. who I'm sure is a very brilliant surgeon...but not a mother. Plus, he can only tell you what he's seen in his practice. You made the right choice and investment with the information you had and the band will only help...I hope this helped you a little bit. I know how stressful and difficult it is. Bye, (Max 3weeks DOC) > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 , Hi there! I just wanted to say that my father is a Neurologist and I grew up around Neurosurgeons. I can tell you from considerable experience that Neurosurgeons(especially pediatric)aren't known for their people-skills and have massive egos. Yours probably thinks he knows more than a PED, PT and definitely an Orthotist! Let me just say this, having grown up with physicians all around me, I still believe no Dr's opinion takes the place of instinct. When we were posed with whether to band or not, my father said that children's heads round out up til the age of 5yrs. However, depending on the severity, some will always have some flatnes or asymmetry-yes, even my father called it a " cosmetic " issue and nothing to worry about since nobody's face/head is perfect-which is true. He did say that HOW MUCH it will round is entirely different with each case...so it may or may not round out to our(and our children's)liking. That's what makes the decision so difficult, it's so subjective. But my instincts told me that this was something that needed to be addressed...and yours did too. Don't second guess yourself because of this one Dr. who I'm sure is a very brilliant surgeon...but not a mother. Plus, he can only tell you what he's seen in his practice. You made the right choice and investment with the information you had and the band will only help...I hope this helped you a little bit. I know how stressful and difficult it is. Bye, (Max 3weeks DOC) > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 ,Just chalk it up to another egocentric closed minded neuro. Would he deny his child braces???! Check out this, this, this and this. These are all recent. I could take a camera around my neighborhood to prove the point that it doesn't always round out. Mom to Dane (4 yo) and Cece (13 mo) DOC Grads Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 ,Just chalk it up to another egocentric closed minded neuro. Would he deny his child braces???! Check out this, this, this and this. These are all recent. I could take a camera around my neighborhood to prove the point that it doesn't always round out. Mom to Dane (4 yo) and Cece (13 mo) DOC Grads Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 , The neuro is a jerk. Unfortunately just because they are nuerosurgeons everyone thinks they know it all, but that is not the case. This man is contradicting some of the most well known nuerosurgeons in the country that have written articles and spoke at conferences on plagiocephaly. As far as kids who didn't overcome plagiocephaly, here is the link to the older plagio group(untreated plagio) OlderPlag/ I guess if what he said was true there wouldn't be an older plagio group,huh? Tell hubby to go look at the pictures. Hope that helps. CAROLG > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 , The neuro is a jerk. Unfortunately just because they are nuerosurgeons everyone thinks they know it all, but that is not the case. This man is contradicting some of the most well known nuerosurgeons in the country that have written articles and spoke at conferences on plagiocephaly. As far as kids who didn't overcome plagiocephaly, here is the link to the older plagio group(untreated plagio) OlderPlag/ I guess if what he said was true there wouldn't be an older plagio group,huh? Tell hubby to go look at the pictures. Hope that helps. CAROLG > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hello , I am new to the group and just recently took my 5 (almost six month-old) for an evaluation with a neuro at Vanderbilt Children's Hospital last week. He is supposed to be "the guy" in his field. Needless to say, he was fairly condescending in so far as my concerns about the plagio went. He did say that he thought Syd's case was very mild and that he would NOT endorse or provide a description for the helmut in any case. He too feels that most cases resolve themselves. I really wish it were so. In addition to the flattening, I'm now seeing a great deal of assymetry, so I've finally found a pediatric craniofacial plastic surgeon who is willing to take a look at her without needing a CT scan first. I really want to hold out hope that her head will straighten itself out and not have to go through the difficult situation with the band or helmut, but sincerely doubt that it will, despite what the neuro said. He actually had even went so far as to discount my concern, saying that the back of the head is not what people look at when they interact with one another. Good grief! He did reiterate that he too felt that the helmut was purely for cosmetic purposes and NEVER lead me to believe that there was any medical necessity for it. I am just now realizing and familiarizing myself with some of the studies that seem to be suggesting otherwise... Best, Mother to Sydney (almost six months with flattening and assymetry)"Carol G." <GATTVA@...> wrote: ,The neuro is a jerk. Unfortunately just because they are nuerosurgeons everyone thinks they know it all, but that is not the case. This man is contradicting some of the most well known nuerosurgeons in the country that have written articles and spoke at conferences on plagiocephaly. As far as kids who didn't overcome plagiocephaly, here is the link to the older plagio group(untreated plagio) OlderPlag/ I guess if what he said was true there wouldn't be an older plagio group,huh? Tell hubby to go look at the pictures. Hope that helps. CAROLG>> Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet.> > > Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hello , I am new to the group and just recently took my 5 (almost six month-old) for an evaluation with a neuro at Vanderbilt Children's Hospital last week. He is supposed to be "the guy" in his field. Needless to say, he was fairly condescending in so far as my concerns about the plagio went. He did say that he thought Syd's case was very mild and that he would NOT endorse or provide a description for the helmut in any case. He too feels that most cases resolve themselves. I really wish it were so. In addition to the flattening, I'm now seeing a great deal of assymetry, so I've finally found a pediatric craniofacial plastic surgeon who is willing to take a look at her without needing a CT scan first. I really want to hold out hope that her head will straighten itself out and not have to go through the difficult situation with the band or helmut, but sincerely doubt that it will, despite what the neuro said. He actually had even went so far as to discount my concern, saying that the back of the head is not what people look at when they interact with one another. Good grief! He did reiterate that he too felt that the helmut was purely for cosmetic purposes and NEVER lead me to believe that there was any medical necessity for it. I am just now realizing and familiarizing myself with some of the studies that seem to be suggesting otherwise... Best, Mother to Sydney (almost six months with flattening and assymetry)"Carol G." <GATTVA@...> wrote: ,The neuro is a jerk. Unfortunately just because they are nuerosurgeons everyone thinks they know it all, but that is not the case. This man is contradicting some of the most well known nuerosurgeons in the country that have written articles and spoke at conferences on plagiocephaly. As far as kids who didn't overcome plagiocephaly, here is the link to the older plagio group(untreated plagio) OlderPlag/ I guess if what he said was true there wouldn't be an older plagio group,huh? Tell hubby to go look at the pictures. Hope that helps. CAROLG>> Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet.> > > Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 , I can only speak from my limited experiance with the doctors but I think it is relevant. (Forgive me if it is not)... Our ped wanted to refer us to a neuro (our son is only 3 mos old, was 2 mos at the time). The neuro had told the pedi's entire office not to send children until they are 6 mos old as most plagio works its way out by then and anything earlier is a " waste of his time " . We went to see a pediatric plastic surgen specializing in cranio facial. He stated that he would see a child at 2 weeks old and would begin treatment in a cup not a band at that early age. What does this mean? I take it to mean that neuro's don't care about cosmetics and may not be the right doc to see if you have purely cosmetic concerns. I understand that later in life neuro may result as a complication but I'm not going there in this post.... You have to do what you feel is best for your child, we fought our pedi and my son is now banded at 3 mos as opposed to " just waiting it out " Best of luck, Rick 's daddy We saw the Ped neurosurgeon yesterdayr who was a real jerk. He said the helmet was completely cosmetic and my son would out grow this. So he contradicts three other opinions from the PT, OT and the Dr who wrote the RX for the band. So what I am wondering, is there merit in what the Neuro said?? According to the Dr no matter what the measurements , he has never seen a child NOT overcome plagiocephaly. Can anyone who has also seen a neurosurgeon please respond to what you were told about the medical necessity of the helmet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 , I can only speak from my limited experiance with the doctors but I think it is relevant. (Forgive me if it is not)... Our ped wanted to refer us to a neuro (our son is only 3 mos old, was 2 mos at the time). The neuro had told the pedi's entire office not to send children until they are 6 mos old as most plagio works its way out by then and anything earlier is a " waste of his time " . We went to see a pediatric plastic surgen specializing in cranio facial. He stated that he would see a child at 2 weeks old and would begin treatment in a cup not a band at that early age. What does this mean? I take it to mean that neuro's don't care about cosmetics and may not be the right doc to see if you have purely cosmetic concerns. I understand that later in life neuro may result as a complication but I'm not going there in this post.... You have to do what you feel is best for your child, we fought our pedi and my son is now banded at 3 mos as opposed to " just waiting it out " Best of luck, Rick 's daddy We saw the Ped neurosurgeon yesterdayr who was a real jerk. He said the helmet was completely cosmetic and my son would out grow this. So he contradicts three other opinions from the PT, OT and the Dr who wrote the RX for the band. So what I am wondering, is there merit in what the Neuro said?? According to the Dr no matter what the measurements , he has never seen a child NOT overcome plagiocephaly. Can anyone who has also seen a neurosurgeon please respond to what you were told about the medical necessity of the helmet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 --- In Plagiocephaly , " jentytib " <jentytib@...> wrote: > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 --- In Plagiocephaly , " jentytib " <jentytib@...> wrote: > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hello. We also went to a Ped Neurosurgeon when my Daughter was younger to get a Rx for the PT for tort and also talk about her plagio. He passed me off and said " it's just minor " . didn't recommend a band at all. Come to find out once we saw a craniofacial surgeon and an Orthotist, wasn't mild at all. She was 14mm (cranial vault) and we DFEINITELY wanted to get her the band. I think that some Neurosurgeons look at it as a cosmetic thing because they figure unless it is severe it can't affect the baby, as far as the brain is concerned. The brain can literally grow in a box without being affected. I found the our Craniofacial surgeon was SO MUCh more caring and wanted to listen to my concerns. Jen (18 mo), tort resolved, Hanger Band Grad (4 years) > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hello. We also went to a Ped Neurosurgeon when my Daughter was younger to get a Rx for the PT for tort and also talk about her plagio. He passed me off and said " it's just minor " . didn't recommend a band at all. Come to find out once we saw a craniofacial surgeon and an Orthotist, wasn't mild at all. She was 14mm (cranial vault) and we DFEINITELY wanted to get her the band. I think that some Neurosurgeons look at it as a cosmetic thing because they figure unless it is severe it can't affect the baby, as far as the brain is concerned. The brain can literally grow in a box without being affected. I found the our Craniofacial surgeon was SO MUCh more caring and wanted to listen to my concerns. Jen (18 mo), tort resolved, Hanger Band Grad (4 years) > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 sorry about the previous post. oops. I know a 10 year old kid who has unresolved plagio. It is totally noticeable. He gets called " crooked head " by the kids at school. It hasn't grown out for him. Haylee > > > > Hi. I am new here but have a question for you all. My son, 13 > > months, has torticollis and plagiocephaly. We have been in PT for > 8 > > months now and his range of motion is better though he is not > > walking. We got an eval from Cranial Tec which said he has 19mm > of > > facial asymmetry. We were told his head would not get better and > as > > he grew the deformity would become more evident as his head grew. > So > > at 11 months we put him in the DOC Band. We saw the Ped > neurosurgeon > > yesterdayr who was a real jerk. He said the helmet was completely > > cosmetic and my son would out grow this. So he contradicts three > > other opinions from the PT, OT and the Dr who wrote the RX for the > > band. So what I am wondering, is there merit in what the Neuro > > said?? My husband is a bit upset now and feels like we never > needed > > this $3000 helmet. According to the Dr no matter what the > > measurements , he has never seen a child NOT overcome > plagiocephaly. > > Can anyone who has also seen a neurosurgeon please respond to what > you > > were told about the medical necessity of the helmet. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 sorry about the previous post. oops. I know a 10 year old kid who has unresolved plagio. It is totally noticeable. He gets called " crooked head " by the kids at school. It hasn't grown out for him. Haylee > > > > Hi. I am new here but have a question for you all. My son, 13 > > months, has torticollis and plagiocephaly. We have been in PT for > 8 > > months now and his range of motion is better though he is not > > walking. We got an eval from Cranial Tec which said he has 19mm > of > > facial asymmetry. We were told his head would not get better and > as > > he grew the deformity would become more evident as his head grew. > So > > at 11 months we put him in the DOC Band. We saw the Ped > neurosurgeon > > yesterdayr who was a real jerk. He said the helmet was completely > > cosmetic and my son would out grow this. So he contradicts three > > other opinions from the PT, OT and the Dr who wrote the RX for the > > band. So what I am wondering, is there merit in what the Neuro > > said?? My husband is a bit upset now and feels like we never > needed > > this $3000 helmet. According to the Dr no matter what the > > measurements , he has never seen a child NOT overcome > plagiocephaly. > > Can anyone who has also seen a neurosurgeon please respond to what > you > > were told about the medical necessity of the helmet. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 We thought our ped neurosurgeon was ridiculous. He looked at our son for one second and said we should try repo for 3 more months and then come back to talk about a DOC band. We were a little floored that he thought repo would help because our son has a severe brachy/moderate plagio head. I just directly asked him if he really thought repo would help and his response in a nutshell was this: No, repo won't help. He needs a band, but lots of parents freak out when I tell them that so I just always tell parents to wait a little longer. Good grief! We just reminded ourselves that this doctor's normal patient is asleep. Also, ped neurosurgeons are seeing very seriously ill children all day with profound disabilities. In comparison, I believe our doctor felt that a little flat head WAS only cosmetic. I will say that our ped neurosurgeon agreed with our feeling that our son's tort was never going to be resolved without getting rid of the flat spot. As far as medical necessity v. cosmetic (and I am not talking in an insurance sense here), it certainly seems like most parents would treat crooked teeth or birth marks and no one would give them a hard time for those " cosmetic " fixes. Even assuming that there is no medical necessity to treating a flat head or asymmetrical face, I do not really see how it is any different. Just my two cents worth. .. Stacey in Charlotte --- In Plagiocephaly , " jentytib " <jentytib@...> wrote: > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 We thought our ped neurosurgeon was ridiculous. He looked at our son for one second and said we should try repo for 3 more months and then come back to talk about a DOC band. We were a little floored that he thought repo would help because our son has a severe brachy/moderate plagio head. I just directly asked him if he really thought repo would help and his response in a nutshell was this: No, repo won't help. He needs a band, but lots of parents freak out when I tell them that so I just always tell parents to wait a little longer. Good grief! We just reminded ourselves that this doctor's normal patient is asleep. Also, ped neurosurgeons are seeing very seriously ill children all day with profound disabilities. In comparison, I believe our doctor felt that a little flat head WAS only cosmetic. I will say that our ped neurosurgeon agreed with our feeling that our son's tort was never going to be resolved without getting rid of the flat spot. As far as medical necessity v. cosmetic (and I am not talking in an insurance sense here), it certainly seems like most parents would treat crooked teeth or birth marks and no one would give them a hard time for those " cosmetic " fixes. Even assuming that there is no medical necessity to treating a flat head or asymmetrical face, I do not really see how it is any different. Just my two cents worth. .. Stacey in Charlotte --- In Plagiocephaly , " jentytib " <jentytib@...> wrote: > > Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial asymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 Hi:My name is , and my son was treated in 2000 with a DOC band. We had to have a CT scan when he was only a week old because he looked liked he had sagittal craniosynostosis (long and narrow head shape). He was a large (8 lb 14 oz), breech baby delivered by c-section. The xrays and CT scan showed no sutures fused. So my pediatrician says some people just have big heads.... but if we want another opinion she would recommend a plastic surgeon or neurosurgeon for further diagnosis. After a week or two, I called her for a referral, and decided on the neurosurgeon.We chose the neurosurgeon, as at the time, I really just wanted to be sure there was nothing wrong with him. He looked at the x-ray plates and the CT scan, had some good things to say about his brain activity, but he barely had time with my son, and told me if it was his child he wouldn't do surgery (that, for a moment calmed me), and then -- as he is handing my s on to me he turns and says to the nurse (NOT me) -- I want to see him in 3 months. It didn't really register too much then - but as I was walking out to my car, feeling quite alone, all I could think of was ""Why"" if nothing was wrong? I went home, looked up ""Abnormal Head shape"" -- and one of the first places I went to had a drawing of a child who had sagittal scaphocephaly and looked just like a picture I had of my son. Using that search is how I found Cranial Technologies, and I found that they had a band for this particular head shape. So I took monthly pictures to take to my neurosurgeon to show progress, or lack thereof, when we went back. One thing I thought was very funny (now) is that at that second appointment, which I took my husband but did most of the talking -- I mentioned that he had a scaphocephalic shape -- the neurosurgeon was on a chair with wheels -- he pushed himself back for dramatic flare, and said ""he Doesn't have sa gittal synostosis!"" I said in a pointed way ""He looks just like a baby who has it, and so has a scaphocephalic SHAPE"" and he said "" he has a dolichocephalic shape"" with the emphasis on the new word. He HATED that I used a term of ""his"" I then freaked out since he wrote the script with that word, and I thought insurance wouldn't cover it (CT told me that some doctors use it). On an Internet exhibition a couple of weeks later I found that dolichocephalic means the SAME thing (Long and Narrow -- they are synonyms in some dictionaries), but that conditions that have dolichocephalic head shape too, were, unfortunately, quite scary for a new mom to read about -- I had to just trust that his head shape was the only thing wrong. He did write a letter of medical necessity, did include that my son couldn't lay in a supine position naturally, and did do one follow up when we were in the band. He just had the most terrible bedside manner -- my mom, who is an OB nurse, stated that all of the pediatric neurosurgeons she's come in contact with over the years have similar characteristics. If surgery isn't warranted, then they don't particularly care -- but if it is, they take wonderful care of their patients.aka ""Kali"" mom to Quinn, 11/19/99, DOC grad for scaphocephalic head shape 10/00http://www.cappskids.org/CAPPSPlagioKidQuinn.htm>> Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial as ymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet.> > >For more plagio info, go to www.plagiocephaly.org/support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 Hi:My name is , and my son was treated in 2000 with a DOC band. We had to have a CT scan when he was only a week old because he looked liked he had sagittal craniosynostosis (long and narrow head shape). He was a large (8 lb 14 oz), breech baby delivered by c-section. The xrays and CT scan showed no sutures fused. So my pediatrician says some people just have big heads.... but if we want another opinion she would recommend a plastic surgeon or neurosurgeon for further diagnosis. After a week or two, I called her for a referral, and decided on the neurosurgeon.We chose the neurosurgeon, as at the time, I really just wanted to be sure there was nothing wrong with him. He looked at the x-ray plates and the CT scan, had some good things to say about his brain activity, but he barely had time with my son, and told me if it was his child he wouldn't do surgery (that, for a moment calmed me), and then -- as he is handing my s on to me he turns and says to the nurse (NOT me) -- I want to see him in 3 months. It didn't really register too much then - but as I was walking out to my car, feeling quite alone, all I could think of was ""Why"" if nothing was wrong? I went home, looked up ""Abnormal Head shape"" -- and one of the first places I went to had a drawing of a child who had sagittal scaphocephaly and looked just like a picture I had of my son. Using that search is how I found Cranial Technologies, and I found that they had a band for this particular head shape. So I took monthly pictures to take to my neurosurgeon to show progress, or lack thereof, when we went back. One thing I thought was very funny (now) is that at that second appointment, which I took my husband but did most of the talking -- I mentioned that he had a scaphocephalic shape -- the neurosurgeon was on a chair with wheels -- he pushed himself back for dramatic flare, and said ""he Doesn't have sa gittal synostosis!"" I said in a pointed way ""He looks just like a baby who has it, and so has a scaphocephalic SHAPE"" and he said "" he has a dolichocephalic shape"" with the emphasis on the new word. He HATED that I used a term of ""his"" I then freaked out since he wrote the script with that word, and I thought insurance wouldn't cover it (CT told me that some doctors use it). On an Internet exhibition a couple of weeks later I found that dolichocephalic means the SAME thing (Long and Narrow -- they are synonyms in some dictionaries), but that conditions that have dolichocephalic head shape too, were, unfortunately, quite scary for a new mom to read about -- I had to just trust that his head shape was the only thing wrong. He did write a letter of medical necessity, did include that my son couldn't lay in a supine position naturally, and did do one follow up when we were in the band. He just had the most terrible bedside manner -- my mom, who is an OB nurse, stated that all of the pediatric neurosurgeons she's come in contact with over the years have similar characteristics. If surgery isn't warranted, then they don't particularly care -- but if it is, they take wonderful care of their patients.aka ""Kali"" mom to Quinn, 11/19/99, DOC grad for scaphocephalic head shape 10/00http://www.cappskids.org/CAPPSPlagioKidQuinn.htm>> Hi. I am new here but have a question for you all. My son, 13 > months, has torticollis and plagiocephaly. We have been in PT for 8 > months now and his range of motion is better though he is not > walking. We got an eval from Cranial Tec which said he has 19mm of > facial as ymmetry. We were told his head would not get better and as > he grew the deformity would become more evident as his head grew. So > at 11 months we put him in the DOC Band. We saw the Ped neurosurgeon > yesterdayr who was a real jerk. He said the helmet was completely > cosmetic and my son would out grow this. So he contradicts three > other opinions from the PT, OT and the Dr who wrote the RX for the > band. So what I am wondering, is there merit in what the Neuro > said?? My husband is a bit upset now and feels like we never needed > this $3000 helmet. According to the Dr no matter what the > measurements , he has never seen a child NOT overcome plagiocephaly. > Can anyone who has also seen a neurosurgeon please respond to what you > were told about the medical necessity of the helmet.> > >For more plagio info, go to www.plagiocephaly.org/support Quote Link to comment Share on other sites More sharing options...
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