Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Good idea, Amy... Mommy to Wes - 5 months old, 2 weeks into DOCband treatment In a message dated 3/23/2006 4:12:46 P.M. Central Standard Time, shadowfax8@... writes: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Good idea, Amy... Mommy to Wes - 5 months old, 2 weeks into DOCband treatment In a message dated 3/23/2006 4:12:46 P.M. Central Standard Time, shadowfax8@... writes: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I think it is an excellent idea! I am frustrated with the fact that leaving the hospital, no one educated me on positioning or preventing this!! If I had known how fast it could happen, I would have been more careful! I think along with the back to sleep campaign, there should be education about positioning to prevent this problem!! I feel so bad for causing it when I could have been so much more careful. Perhaps this is a way to educate new moms as well!! --- In Plagiocephaly , Audrey <isdfc@...> wrote: > > I was reading Dear Abby and thinking about how many > others read her column. Several times people have > written in asking her to get the word out about an > important topic, and she does. What if several of us > wrote a brief letter describing Plagiocephaly (and > Torticollis) and maybe how doctors & insurance are > wrongly thinking of it as " just cosmetic " ? It might > grab her attention enough to run one of them. I'm > tired of reading about how many doctors don't have a > clue about either subject- nor do they seem to think > it's important to learn about them! Every major > newspaper would run it, which might catch THEIR > attention enough to do individual stories. > http://www.dearabby.com > > Audrey > 7 mo, DOC Band 1/23/2006 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I think it is an excellent idea! I am frustrated with the fact that leaving the hospital, no one educated me on positioning or preventing this!! If I had known how fast it could happen, I would have been more careful! I think along with the back to sleep campaign, there should be education about positioning to prevent this problem!! I feel so bad for causing it when I could have been so much more careful. Perhaps this is a way to educate new moms as well!! --- In Plagiocephaly , Audrey <isdfc@...> wrote: > > I was reading Dear Abby and thinking about how many > others read her column. Several times people have > written in asking her to get the word out about an > important topic, and she does. What if several of us > wrote a brief letter describing Plagiocephaly (and > Torticollis) and maybe how doctors & insurance are > wrongly thinking of it as " just cosmetic " ? It might > grab her attention enough to run one of them. I'm > tired of reading about how many doctors don't have a > clue about either subject- nor do they seem to think > it's important to learn about them! Every major > newspaper would run it, which might catch THEIR > attention enough to do individual stories. > http://www.dearabby.com > > Audrey > 7 mo, DOC Band 1/23/2006 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column. -Amy mother to Noah, 7 months, STARbanded 3/17/06 --- In Plagiocephaly , Audrey <isdfc@...> wrote: > > I was reading Dear Abby and thinking about how many > others read her column. Several times people have > written in asking her to get the word out about an > important topic, and she does. What if several of us > wrote a brief letter describing Plagiocephaly (and > Torticollis) and maybe how doctors & insurance are > wrongly thinking of it as " just cosmetic " ? It might > grab her attention enough to run one of them. I'm > tired of reading about how many doctors don't have a > clue about either subject- nor do they seem to think > it's important to learn about them! Every major > newspaper would run it, which might catch THEIR > attention enough to do individual stories. > http://www.dearabby.com > > Audrey > 7 mo, DOC Band 1/23/2006 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column. -Amy mother to Noah, 7 months, STARbanded 3/17/06 --- In Plagiocephaly , Audrey <isdfc@...> wrote: > > I was reading Dear Abby and thinking about how many > others read her column. Several times people have > written in asking her to get the word out about an > important topic, and she does. What if several of us > wrote a brief letter describing Plagiocephaly (and > Torticollis) and maybe how doctors & insurance are > wrongly thinking of it as " just cosmetic " ? It might > grab her attention enough to run one of them. I'm > tired of reading about how many doctors don't have a > clue about either subject- nor do they seem to think > it's important to learn about them! Every major > newspaper would run it, which might catch THEIR > attention enough to do individual stories. > http://www.dearabby.com > > Audrey > 7 mo, DOC Band 1/23/2006 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Amy, that's terrific. I would love it if it were somehow to mention that many insurances do not cover a single penny for the treatment as they are uneducated and uninformed on the condition and recognize it as "cosmetic". I would also love if it mentioned how hospitals should educate on repositioning and the condition upon discharge - they are so quick to pester you about breastfeeding and SIDS, however not one time was the risk of brachy/plagio mentioned to me... I love this idea, your rough draft is great. Thanks! Mommy to Wes - 5 months old, DOCbanded 2 weeks In a message dated 3/24/2006 10:41:30 A.M. Central Standard Time, isdfc@... writes: That's a good idea Amy. Here is my rough draft. Ikept in mind the letters can't be too long to make itin the column, while still trying to mention severalissues...Dear Abby,As first time parents, my husband and I felt we hadread all the books and taken the right classes toprepare. So we were shocked at our heathly son's fourmonth check up when the doctor suddenly becameconcerned about the flat area on the side of his head.We were referred to Cranial Technologies for a freeconsultation- finding out he has what is calledPlagiocephaly, and that it was due to being born witha shortened muscle in his neck (torticollis). Luckilyit was caught early because the correction rate ismuch higher for younger babies. Unfortunately itwasn't caught soon enough and he is having to wear anexpensive band, my insurance only paid 20%, forseveral months to help his head round out. We wish inall the places where we heard or read "'Back To Sleep'to prevent SIDS", they had also stressed how importantit was to be on his tummy while awake to prevent hishead from flattening. Please Abby, help us get theword out that this is a serious issue doctors need tobe doing more research on and informing patients of atbirth.Audrey C.Chandler, Arizona--- onlyashadow8 <shadowfax8@...> wrote:> I'd certainly be willing to help out with this,> since I believe that > my husband and I contributed to my son's plagio> because we didn't > know any better. The information about plagio needs> to be better > linked to the SIDS information, and awareness needs> to be raised > that this is not a cosmetic problem and that> insurance should cover > its treatment. If we decide to do it, maybe we> should coordinate > the letters so that everyone is communicating> essentially the same > message--maybe that way it'll have a greater chance> of turning into > a column.> > -Amy> mother to Noah, 7 months, STARbanded 3/17/06> > > > >> > I was reading Dear Abby and thinking about how> many> > others read her column. Several times people have> > written in asking her to get the word out about an> > important topic, and she does. What if several of> us> > wrote a brief letter describing Plagiocephaly (and> > Torticollis) and maybe how doctors & insurance are> > wrongly thinking of it as "just cosmetic"? It> might> > grab her attention enough to run one of them. I'm> > tired of reading about how many doctors don't have> a> > clue about either subject- nor do they seem to> think> > it's important to learn about them! Every major> > newspaper would run it, which might catch THEIR> > attention enough to do individual stories.> > http://www.dearabby.com> > > > Audrey> > 7 mo, DOC Band 1/23/2006> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Amy, that's terrific. I would love it if it were somehow to mention that many insurances do not cover a single penny for the treatment as they are uneducated and uninformed on the condition and recognize it as "cosmetic". I would also love if it mentioned how hospitals should educate on repositioning and the condition upon discharge - they are so quick to pester you about breastfeeding and SIDS, however not one time was the risk of brachy/plagio mentioned to me... I love this idea, your rough draft is great. Thanks! Mommy to Wes - 5 months old, DOCbanded 2 weeks In a message dated 3/24/2006 10:41:30 A.M. Central Standard Time, isdfc@... writes: That's a good idea Amy. Here is my rough draft. Ikept in mind the letters can't be too long to make itin the column, while still trying to mention severalissues...Dear Abby,As first time parents, my husband and I felt we hadread all the books and taken the right classes toprepare. So we were shocked at our heathly son's fourmonth check up when the doctor suddenly becameconcerned about the flat area on the side of his head.We were referred to Cranial Technologies for a freeconsultation- finding out he has what is calledPlagiocephaly, and that it was due to being born witha shortened muscle in his neck (torticollis). Luckilyit was caught early because the correction rate ismuch higher for younger babies. Unfortunately itwasn't caught soon enough and he is having to wear anexpensive band, my insurance only paid 20%, forseveral months to help his head round out. We wish inall the places where we heard or read "'Back To Sleep'to prevent SIDS", they had also stressed how importantit was to be on his tummy while awake to prevent hishead from flattening. Please Abby, help us get theword out that this is a serious issue doctors need tobe doing more research on and informing patients of atbirth.Audrey C.Chandler, Arizona--- onlyashadow8 <shadowfax8@...> wrote:> I'd certainly be willing to help out with this,> since I believe that > my husband and I contributed to my son's plagio> because we didn't > know any better. The information about plagio needs> to be better > linked to the SIDS information, and awareness needs> to be raised > that this is not a cosmetic problem and that> insurance should cover > its treatment. If we decide to do it, maybe we> should coordinate > the letters so that everyone is communicating> essentially the same > message--maybe that way it'll have a greater chance> of turning into > a column.> > -Amy> mother to Noah, 7 months, STARbanded 3/17/06> > > > >> > I was reading Dear Abby and thinking about how> many> > others read her column. Several times people have> > written in asking her to get the word out about an> > important topic, and she does. What if several of> us> > wrote a brief letter describing Plagiocephaly (and> > Torticollis) and maybe how doctors & insurance are> > wrongly thinking of it as "just cosmetic"? It> might> > grab her attention enough to run one of them. I'm> > tired of reading about how many doctors don't have> a> > clue about either subject- nor do they seem to> think> > it's important to learn about them! Every major> > newspaper would run it, which might catch THEIR> > attention enough to do individual stories.> > http://www.dearabby.com> > > > Audrey> > 7 mo, DOC Band 1/23/2006> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 That's a good idea Amy. Here is my rough draft. I kept in mind the letters can't be too long to make it in the column, while still trying to mention several issues... Dear Abby, As first time parents, my husband and I felt we had read all the books and taken the right classes to prepare. So we were shocked at our heathly son's four month check up when the doctor suddenly became concerned about the flat area on the side of his head. We were referred to Cranial Technologies for a free consultation- finding out he has what is called Plagiocephaly, and that it was due to being born with a shortened muscle in his neck (torticollis). Luckily it was caught early because the correction rate is much higher for younger babies. Unfortunately it wasn't caught soon enough and he is having to wear an expensive band, my insurance only paid 20%, for several months to help his head round out. We wish in all the places where we heard or read " 'Back To Sleep' to prevent SIDS " , they had also stressed how important it was to be on his tummy while awake to prevent his head from flattening. Please Abby, help us get the word out that this is a serious issue doctors need to be doing more research on and informing patients of at birth. Audrey C. Chandler, Arizona --- onlyashadow8 <shadowfax8@...> wrote: > I'd certainly be willing to help out with this, > since I believe that > my husband and I contributed to my son's plagio > because we didn't > know any better. The information about plagio needs > to be better > linked to the SIDS information, and awareness needs > to be raised > that this is not a cosmetic problem and that > insurance should cover > its treatment. If we decide to do it, maybe we > should coordinate > the letters so that everyone is communicating > essentially the same > message--maybe that way it'll have a greater chance > of turning into > a column. > > -Amy > mother to Noah, 7 months, STARbanded 3/17/06 > > > > > > > I was reading Dear Abby and thinking about how > many > > others read her column. Several times people have > > written in asking her to get the word out about an > > important topic, and she does. What if several of > us > > wrote a brief letter describing Plagiocephaly (and > > Torticollis) and maybe how doctors & insurance are > > wrongly thinking of it as " just cosmetic " ? It > might > > grab her attention enough to run one of them. I'm > > tired of reading about how many doctors don't have > a > > clue about either subject- nor do they seem to > think > > it's important to learn about them! Every major > > newspaper would run it, which might catch THEIR > > attention enough to do individual stories. > > http://www.dearabby.com > > > > Audrey > > 7 mo, DOC Band 1/23/2006 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 That's a good idea Amy. Here is my rough draft. I kept in mind the letters can't be too long to make it in the column, while still trying to mention several issues... Dear Abby, As first time parents, my husband and I felt we had read all the books and taken the right classes to prepare. So we were shocked at our heathly son's four month check up when the doctor suddenly became concerned about the flat area on the side of his head. We were referred to Cranial Technologies for a free consultation- finding out he has what is called Plagiocephaly, and that it was due to being born with a shortened muscle in his neck (torticollis). Luckily it was caught early because the correction rate is much higher for younger babies. Unfortunately it wasn't caught soon enough and he is having to wear an expensive band, my insurance only paid 20%, for several months to help his head round out. We wish in all the places where we heard or read " 'Back To Sleep' to prevent SIDS " , they had also stressed how important it was to be on his tummy while awake to prevent his head from flattening. Please Abby, help us get the word out that this is a serious issue doctors need to be doing more research on and informing patients of at birth. Audrey C. Chandler, Arizona --- onlyashadow8 <shadowfax8@...> wrote: > I'd certainly be willing to help out with this, > since I believe that > my husband and I contributed to my son's plagio > because we didn't > know any better. The information about plagio needs > to be better > linked to the SIDS information, and awareness needs > to be raised > that this is not a cosmetic problem and that > insurance should cover > its treatment. If we decide to do it, maybe we > should coordinate > the letters so that everyone is communicating > essentially the same > message--maybe that way it'll have a greater chance > of turning into > a column. > > -Amy > mother to Noah, 7 months, STARbanded 3/17/06 > > > > > > > I was reading Dear Abby and thinking about how > many > > others read her column. Several times people have > > written in asking her to get the word out about an > > important topic, and she does. What if several of > us > > wrote a brief letter describing Plagiocephaly (and > > Torticollis) and maybe how doctors & insurance are > > wrongly thinking of it as " just cosmetic " ? It > might > > grab her attention enough to run one of them. I'm > > tired of reading about how many doctors don't have > a > > clue about either subject- nor do they seem to > think > > it's important to learn about them! Every major > > newspaper would run it, which might catch THEIR > > attention enough to do individual stories. > > http://www.dearabby.com > > > > Audrey > > 7 mo, DOC Band 1/23/2006 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 That's a good idea Amy. Here is my rough draft. I kept in mind the letters can't be too long to make it in the column, while still trying to mention several issues... Dear Abby, As first time parents, my husband and I felt we had read all the books and taken the right classes to prepare. So we were shocked at our heathly son's four month check up when the doctor suddenly became concerned about the flat area on the side of his head. We were referred to Cranial Technologies for a free consultation- finding out he has what is called Plagiocephaly, and that it was due to being born with a shortened muscle in his neck (torticollis). Luckily it was caught early because the correction rate is much higher for younger babies. Unfortunately it wasn't caught soon enough and he is having to wear an expensive band, my insurance only paid 20%, for several months to help his head round out. We wish in all the places where we heard or read " 'Back To Sleep' to prevent SIDS " , they had also stressed how important it was to be on his tummy while awake to prevent his head from flattening. Please Abby, help us get the word out that this is a serious issue doctors need to be doing more research on and informing patients of at birth. Audrey C. Chandler, Arizona --- onlyashadow8 <shadowfax8@...> wrote: > I'd certainly be willing to help out with this, > since I believe that > my husband and I contributed to my son's plagio > because we didn't > know any better. The information about plagio needs > to be better > linked to the SIDS information, and awareness needs > to be raised > that this is not a cosmetic problem and that > insurance should cover > its treatment. If we decide to do it, maybe we > should coordinate > the letters so that everyone is communicating > essentially the same > message--maybe that way it'll have a greater chance > of turning into > a column. > > -Amy > mother to Noah, 7 months, STARbanded 3/17/06 > > > > > > > I was reading Dear Abby and thinking about how > many > > others read her column. Several times people have > > written in asking her to get the word out about an > > important topic, and she does. What if several of > us > > wrote a brief letter describing Plagiocephaly (and > > Torticollis) and maybe how doctors & insurance are > > wrongly thinking of it as " just cosmetic " ? It > might > > grab her attention enough to run one of them. I'm > > tired of reading about how many doctors don't have > a > > clue about either subject- nor do they seem to > think > > it's important to learn about them! Every major > > newspaper would run it, which might catch THEIR > > attention enough to do individual stories. > > http://www.dearabby.com > > > > Audrey > > 7 mo, DOC Band 1/23/2006 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 That's a good idea Amy. Here is my rough draft. I kept in mind the letters can't be too long to make it in the column, while still trying to mention several issues... Dear Abby, As first time parents, my husband and I felt we had read all the books and taken the right classes to prepare. So we were shocked at our heathly son's four month check up when the doctor suddenly became concerned about the flat area on the side of his head. We were referred to Cranial Technologies for a free consultation- finding out he has what is called Plagiocephaly, and that it was due to being born with a shortened muscle in his neck (torticollis). Luckily it was caught early because the correction rate is much higher for younger babies. Unfortunately it wasn't caught soon enough and he is having to wear an expensive band, my insurance only paid 20%, for several months to help his head round out. We wish in all the places where we heard or read " 'Back To Sleep' to prevent SIDS " , they had also stressed how important it was to be on his tummy while awake to prevent his head from flattening. Please Abby, help us get the word out that this is a serious issue doctors need to be doing more research on and informing patients of at birth. Audrey C. Chandler, Arizona --- onlyashadow8 <shadowfax8@...> wrote: > I'd certainly be willing to help out with this, > since I believe that > my husband and I contributed to my son's plagio > because we didn't > know any better. The information about plagio needs > to be better > linked to the SIDS information, and awareness needs > to be raised > that this is not a cosmetic problem and that > insurance should cover > its treatment. If we decide to do it, maybe we > should coordinate > the letters so that everyone is communicating > essentially the same > message--maybe that way it'll have a greater chance > of turning into > a column. > > -Amy > mother to Noah, 7 months, STARbanded 3/17/06 > > > > > > > I was reading Dear Abby and thinking about how > many > > others read her column. Several times people have > > written in asking her to get the word out about an > > important topic, and she does. What if several of > us > > wrote a brief letter describing Plagiocephaly (and > > Torticollis) and maybe how doctors & insurance are > > wrongly thinking of it as " just cosmetic " ? It > might > > grab her attention enough to run one of them. I'm > > tired of reading about how many doctors don't have > a > > clue about either subject- nor do they seem to > think > > it's important to learn about them! Every major > > newspaper would run it, which might catch THEIR > > attention enough to do individual stories. > > http://www.dearabby.com > > > > Audrey > > 7 mo, DOC Band 1/23/2006 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi Amy, Terrific! I loved the details about insurance and lack of hospital/discharge education you included in there...you guys are terrific! Thanks! Mommy to Wes - 5 months old, DOC band since 3/10 In a message dated 3/25/2006 8:41:43 P.M. Central Standard Time, shadowfax8@... writes: Hi Audrey,I wrote a rough draft too. I think I like yours better, but I tried to make mine a little different so it wouldn't look like we were sending a form letter, and I also tried to squeeze a few more details in. Let me know what you think!Dear Abby,Becoming a parent is the most wonderful experience, and also one that so many people have had that you'd think there'd be plenty of accurate information out there on how to care for a baby. Imagine my husband's and my surprise when we found out at our son's 4-month checkup that he had a condition called plagiocephaly, which we'd never even heard of before! Plagiocephaly is a flattening of the back of the head. It can be present from birth due to a shortening of the baby's neck muscles on one side that cause them to sleep with their head in the same position (called torticollis), but it can also result from sleeping your baby on their back in the same position all the time. Although our son's plagiocephaly is partially caused by torticollis, we believe that we might have made his little head worse because we didn't know that we should be watching for flattening, or varying the positions that we held our son in or let him sleep in. We also didn't know that this flattening could get so severe that it won't just "round out" as our baby gets older. So now our son is wearing a band to correct the shape of his head. It looks kind of like a football helmet with a hole in the top, except it costs $3000. And the worst part is, our insurance isn't likely to pay for it because lots of insurers consider this condition cosmetic. It's NOT. If left untreated, apart from having a strange looking head, your child can have vision problems, migraines, TMJ, or neurological problems later in life. The problem is that right now plagiocephaly is so new—it wasn't a big problem before the Back to Sleep Campaign, but now that everyone is sleeping their babies on their backs the number of cases of it are going through the roof! We need the doctors to tell parents about this before we take our babies home from the hospital, just like you are told about how to prevent crib death. Please Abby, help us get the word out about this condition so that other parents won't flatten their babies' heads without knowing it! Amy P.Durham, NC> > >> > > I was reading Dear Abby and thinking about how> > many> > > others read her column. Several times people have> > > written in asking her to get the word out about an> > > important topic, and she does. What if several of> > us> > > wrote a brief letter describing Plagiocephaly (and> > > Torticollis) and maybe how doctors & insurance are> > > wrongly thinking of it as "just cosmetic"? It> > might> > > grab her attention enough to run one of them. I'm> > > tired of reading about how many doctors don't have> > a> > > clue about either subject- nor do they seem to> > think> > > it's important to learn about them! Every major> > > newspaper would run it, which might catch THEIR> > > attention enough to do individual stories.> > > http://www.dearabby.com> > > > > > Audrey> > > 7 mo, DOC Band 1/23/2006> > > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi Amy, Terrific! I loved the details about insurance and lack of hospital/discharge education you included in there...you guys are terrific! Thanks! Mommy to Wes - 5 months old, DOC band since 3/10 In a message dated 3/25/2006 8:41:43 P.M. Central Standard Time, shadowfax8@... writes: Hi Audrey,I wrote a rough draft too. I think I like yours better, but I tried to make mine a little different so it wouldn't look like we were sending a form letter, and I also tried to squeeze a few more details in. Let me know what you think!Dear Abby,Becoming a parent is the most wonderful experience, and also one that so many people have had that you'd think there'd be plenty of accurate information out there on how to care for a baby. Imagine my husband's and my surprise when we found out at our son's 4-month checkup that he had a condition called plagiocephaly, which we'd never even heard of before! Plagiocephaly is a flattening of the back of the head. It can be present from birth due to a shortening of the baby's neck muscles on one side that cause them to sleep with their head in the same position (called torticollis), but it can also result from sleeping your baby on their back in the same position all the time. Although our son's plagiocephaly is partially caused by torticollis, we believe that we might have made his little head worse because we didn't know that we should be watching for flattening, or varying the positions that we held our son in or let him sleep in. We also didn't know that this flattening could get so severe that it won't just "round out" as our baby gets older. So now our son is wearing a band to correct the shape of his head. It looks kind of like a football helmet with a hole in the top, except it costs $3000. And the worst part is, our insurance isn't likely to pay for it because lots of insurers consider this condition cosmetic. It's NOT. If left untreated, apart from having a strange looking head, your child can have vision problems, migraines, TMJ, or neurological problems later in life. The problem is that right now plagiocephaly is so new—it wasn't a big problem before the Back to Sleep Campaign, but now that everyone is sleeping their babies on their backs the number of cases of it are going through the roof! We need the doctors to tell parents about this before we take our babies home from the hospital, just like you are told about how to prevent crib death. Please Abby, help us get the word out about this condition so that other parents won't flatten their babies' heads without knowing it! Amy P.Durham, NC> > >> > > I was reading Dear Abby and thinking about how> > many> > > others read her column. Several times people have> > > written in asking her to get the word out about an> > > important topic, and she does. What if several of> > us> > > wrote a brief letter describing Plagiocephaly (and> > > Torticollis) and maybe how doctors & insurance are> > > wrongly thinking of it as "just cosmetic"? It> > might> > > grab her attention enough to run one of them. I'm> > > tired of reading about how many doctors don't have> > a> > > clue about either subject- nor do they seem to> > think> > > it's important to learn about them! Every major> > > newspaper would run it, which might catch THEIR> > > attention enough to do individual stories.> > > http://www.dearabby.com> > > > > > Audrey> > > 7 mo, DOC Band 1/23/2006> > > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Hi Amy, Your letter sounds good too! There is so much information to give out about plagio that won't fit in an advice column, but maybe the few paragraphs about it will cause some parents to look further into the subject. I for one didn't know our babies heads didn't just naturally form correctly! And I never imagined they could develop facial asymmetry AFTER birth. Like a lot of others I feel the guilt that comes with the flattened head... even if he ended up needing a helmet anyway, if I had all the facts in the beginning at least I would've felt better knowing I tried to avoid it happening. Audrey 7 mo, DOC Band 1/23/2006 --- onlyashadow8 <shadowfax8@...> wrote: > Hi Audrey, > > I wrote a rough draft too. I think I like yours > better, but I tried > to make mine a little different so it wouldn't look > like we were > sending a form letter, and I also tried to squeeze a > few more details > in. Let me know what you think! > > Dear Abby, > > Becoming a parent is the most wonderful experience, > and also one that > so many people have had that you'd think there'd be > plenty of > accurate information out there on how to care for a > baby. Imagine my > husband's and my surprise when we found out at our > son's 4-month > checkup that he had a condition called > plagiocephaly, which we'd > never even heard of before! Plagiocephaly is a > flattening of the > back of the head. It can be present from birth due > to a shortening > of the baby's neck muscles on one side that cause > them to sleep with > their head in the same position (called > torticollis), but it can also > result from sleeping your baby on their back in the > same position all > the time. Although our son's plagiocephaly is > partially caused by > torticollis, we believe that we might have made his > little head worse > because we didn't know that we should be watching > for flattening, or > varying the positions that we held our son in or let > him sleep in. > We also didn't know that this flattening could get > so severe that it > won't just " round out " as our baby gets older. > > So now our son is wearing a band to correct the > shape of his head. > It looks kind of like a football helmet with a hole > in the top, > except it costs $3000. And the worst part is, our > insurance isn't > likely to pay for it because lots of insurers > consider this condition > cosmetic. It's NOT. If left untreated, apart from > having a strange > looking head, your child can have vision problems, > migraines, TMJ, or > neurological problems later in life. The problem is > that right now > plagiocephaly is so new—it wasn't a big problem > before the Back to > Sleep Campaign, but now that everyone is sleeping > their babies on > their backs the number of cases of it are going > through the roof! We > need the doctors to tell parents about this before > we take our babies > home from the hospital, just like you are told about > how to prevent > crib death. Please Abby, help us get the word out > about this > condition so that other parents won't flatten their > babies' heads > without knowing it! > > Amy P. > Durham, NC > > > > > > > > > > > > > I was reading Dear Abby and thinking about how > > > many > > > > others read her column. Several times people > have > > > > written in asking her to get the word out > about an > > > > important topic, and she does. What if > several of > > > us > > > > wrote a brief letter describing Plagiocephaly > (and > > > > Torticollis) and maybe how doctors & insurance > are > > > > wrongly thinking of it as " just cosmetic " ? It > > > might > > > > grab her attention enough to run one of them. > I'm > > > > tired of reading about how many doctors don't > have > > > a > > > > clue about either subject- nor do they seem to > > > think > > > > it's important to learn about them! Every > major > > > > newspaper would run it, which might catch > THEIR > > > > attention enough to do individual stories. > > > > http://www.dearabby.com > > > > > > > > Audrey > > > > 7 mo, DOC Band 1/23/2006 > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Hi Amy, Your letter sounds good too! There is so much information to give out about plagio that won't fit in an advice column, but maybe the few paragraphs about it will cause some parents to look further into the subject. I for one didn't know our babies heads didn't just naturally form correctly! And I never imagined they could develop facial asymmetry AFTER birth. Like a lot of others I feel the guilt that comes with the flattened head... even if he ended up needing a helmet anyway, if I had all the facts in the beginning at least I would've felt better knowing I tried to avoid it happening. Audrey 7 mo, DOC Band 1/23/2006 --- onlyashadow8 <shadowfax8@...> wrote: > Hi Audrey, > > I wrote a rough draft too. I think I like yours > better, but I tried > to make mine a little different so it wouldn't look > like we were > sending a form letter, and I also tried to squeeze a > few more details > in. Let me know what you think! > > Dear Abby, > > Becoming a parent is the most wonderful experience, > and also one that > so many people have had that you'd think there'd be > plenty of > accurate information out there on how to care for a > baby. Imagine my > husband's and my surprise when we found out at our > son's 4-month > checkup that he had a condition called > plagiocephaly, which we'd > never even heard of before! Plagiocephaly is a > flattening of the > back of the head. It can be present from birth due > to a shortening > of the baby's neck muscles on one side that cause > them to sleep with > their head in the same position (called > torticollis), but it can also > result from sleeping your baby on their back in the > same position all > the time. Although our son's plagiocephaly is > partially caused by > torticollis, we believe that we might have made his > little head worse > because we didn't know that we should be watching > for flattening, or > varying the positions that we held our son in or let > him sleep in. > We also didn't know that this flattening could get > so severe that it > won't just " round out " as our baby gets older. > > So now our son is wearing a band to correct the > shape of his head. > It looks kind of like a football helmet with a hole > in the top, > except it costs $3000. And the worst part is, our > insurance isn't > likely to pay for it because lots of insurers > consider this condition > cosmetic. It's NOT. If left untreated, apart from > having a strange > looking head, your child can have vision problems, > migraines, TMJ, or > neurological problems later in life. The problem is > that right now > plagiocephaly is so new—it wasn't a big problem > before the Back to > Sleep Campaign, but now that everyone is sleeping > their babies on > their backs the number of cases of it are going > through the roof! We > need the doctors to tell parents about this before > we take our babies > home from the hospital, just like you are told about > how to prevent > crib death. Please Abby, help us get the word out > about this > condition so that other parents won't flatten their > babies' heads > without knowing it! > > Amy P. > Durham, NC > > > > > > > > > > > > > I was reading Dear Abby and thinking about how > > > many > > > > others read her column. Several times people > have > > > > written in asking her to get the word out > about an > > > > important topic, and she does. What if > several of > > > us > > > > wrote a brief letter describing Plagiocephaly > (and > > > > Torticollis) and maybe how doctors & insurance > are > > > > wrongly thinking of it as " just cosmetic " ? It > > > might > > > > grab her attention enough to run one of them. > I'm > > > > tired of reading about how many doctors don't > have > > > a > > > > clue about either subject- nor do they seem to > > > think > > > > it's important to learn about them! Every > major > > > > newspaper would run it, which might catch > THEIR > > > > attention enough to do individual stories. > > > > http://www.dearabby.com > > > > > > > > Audrey > > > > 7 mo, DOC Band 1/23/2006 > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hi Audrey, If you don't think mine's too long, then I'll go with it. Should we try to get two or three more people to write letters and all send around the same time? -Amy > > > > > > > > > > I was reading Dear Abby and thinking about how > > > > many > > > > > others read her column. Several times people > > have > > > > > written in asking her to get the word out > > about an > > > > > important topic, and she does. What if > > several of > > > > us > > > > > wrote a brief letter describing Plagiocephaly > > (and > > > > > Torticollis) and maybe how doctors & insurance > > are > > > > > wrongly thinking of it as " just cosmetic " ? It > > > > might > > > > > grab her attention enough to run one of them. > > I'm > > > > > tired of reading about how many doctors don't > > have > > > > a > > > > > clue about either subject- nor do they seem to > > > > think > > > > > it's important to learn about them! Every > > major > > > > > newspaper would run it, which might catch > > THEIR > > > > > attention enough to do individual stories. > > > > > http://www.dearabby.com > > > > > > > > > > Audrey > > > > > 7 mo, DOC Band 1/23/2006 > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hi Audrey, If you don't think mine's too long, then I'll go with it. Should we try to get two or three more people to write letters and all send around the same time? -Amy > > > > > > > > > > I was reading Dear Abby and thinking about how > > > > many > > > > > others read her column. Several times people > > have > > > > > written in asking her to get the word out > > about an > > > > > important topic, and she does. What if > > several of > > > > us > > > > > wrote a brief letter describing Plagiocephaly > > (and > > > > > Torticollis) and maybe how doctors & insurance > > are > > > > > wrongly thinking of it as " just cosmetic " ? It > > > > might > > > > > grab her attention enough to run one of them. > > I'm > > > > > tired of reading about how many doctors don't > > have > > > > a > > > > > clue about either subject- nor do they seem to > > > > think > > > > > it's important to learn about them! Every > > major > > > > > newspaper would run it, which might catch > > THEIR > > > > > attention enough to do individual stories. > > > > > http://www.dearabby.com > > > > > > > > > > Audrey > > > > > 7 mo, DOC Band 1/23/2006 > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 It would help if a few more wrote letters. Anyone who wants to write one doesn't have to share it with us, just submit it to http://www.dearabby.com around the same time. Even if some only write something as simple as " Plagiocephaly is a growing problem that needs to be brought to the attention of parents " , it is better than nothing. Audrey --- onlyashadow8 <shadowfax8@...> wrote: > Hi Audrey, > > If you don't think mine's too long, then I'll go > with it. Should we > try to get two or three more people to write letters > and all send > around the same time? > > -Amy > > > > > > > > > > > > > > > > I was reading Dear Abby and thinking about > how > > > > > many > > > > > > others read her column. Several times > people > > > have > > > > > > written in asking her to get the word out > > > about an > > > > > > important topic, and she does. What if > > > several of > > > > > us > > > > > > wrote a brief letter describing > Plagiocephaly > > > (and > > > > > > Torticollis) and maybe how doctors & > insurance > > > are > > > > > > wrongly thinking of it as " just cosmetic " ? > It > > > > > might > > > > > > grab her attention enough to run one of > them. > > > I'm > > > > > > tired of reading about how many doctors > don't > > > have > > > > > a > > > > > > clue about either subject- nor do they > seem to > > > > > think > > > > > > it's important to learn about them! Every > > > major > > > > > > newspaper would run it, which might catch > > > THEIR > > > > > > attention enough to do individual stories. > > > > > > http://www.dearabby.com > > > > > > > > > > > > Audrey > > > > > > 7 mo, DOC Band 1/23/2006 > > > > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 It would help if a few more wrote letters. Anyone who wants to write one doesn't have to share it with us, just submit it to http://www.dearabby.com around the same time. Even if some only write something as simple as " Plagiocephaly is a growing problem that needs to be brought to the attention of parents " , it is better than nothing. Audrey --- onlyashadow8 <shadowfax8@...> wrote: > Hi Audrey, > > If you don't think mine's too long, then I'll go > with it. Should we > try to get two or three more people to write letters > and all send > around the same time? > > -Amy > > > > > > > > > > > > > > > > I was reading Dear Abby and thinking about > how > > > > > many > > > > > > others read her column. Several times > people > > > have > > > > > > written in asking her to get the word out > > > about an > > > > > > important topic, and she does. What if > > > several of > > > > > us > > > > > > wrote a brief letter describing > Plagiocephaly > > > (and > > > > > > Torticollis) and maybe how doctors & > insurance > > > are > > > > > > wrongly thinking of it as " just cosmetic " ? > It > > > > > might > > > > > > grab her attention enough to run one of > them. > > > I'm > > > > > > tired of reading about how many doctors > don't > > > have > > > > > a > > > > > > clue about either subject- nor do they > seem to > > > > > think > > > > > > it's important to learn about them! Every > > > major > > > > > > newspaper would run it, which might catch > > > THEIR > > > > > > attention enough to do individual stories. > > > > > > http://www.dearabby.com > > > > > > > > > > > > Audrey > > > > > > 7 mo, DOC Band 1/23/2006 > > > > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hi Alice, I received the same types of criticism/confusion from my family/friends. What I found most helpful was to send them all the link to Cranial Technologies website (as well as a few other sites) where they could read all about treatment, medical info., etc. I found their site to be very informative. My friends and family, who had never even heard of the condition, now completely understand. You probably already know it since you're getting the DOC, but just in case, the link is as follows: www.cranialtech.com Also, another great site full of information is: CAPPS Plagio Information And, lastly: www.plagiocephaly.org I found all of these sites contain excellent information to pass along to your friends and family. It is hard enough for us to go through this as parents, but to receive criticism and arguments from our family makes it so much harder - it helps so much to have everyone understanding the condition and the reasoning for treatment. Hope this helps! Please let me know if you have any questions as I have been down the same road... Very best to you and your child, Mommy to Wes - 5 months old - DOCband since 3/10 - Dallas, TX In a message dated 3/28/2006 10:58:47 A.M. Central Standard Time, thealbgirl2004dc@... writes: I apologize if this question is obvious or repetitive, but does anyone know of any articles online that I can send to my inlaws that explain the medical reasons for treating plagio? I'm embarrassed to admit that I don't really know what the medical reasons are for treating plagio--we just wanted our baby's head to not look flat and dented! I'll provide a little background here: this is more of a vent, but my husband and I are receiving a lot of criticism from my inlaws (his parents) for putting our 10 month old in a DOC band. When I explained that there were medical reasons and that it wasn't just cosmetic, they literally scoffed (well laughed, really) at me. Unfortunately I wasn't armed with a lot of specific facts about what can happen medically if it's untreated. Our daughter's plagio was classified as moderate and our ped didn't really think it was that necessary to treat, but he gave us a referral anyway, we decided to do it and the insurance co covered it. Unfortunately that still has not quelled the criticism from the inlaws. Any advice?? Thanks in advance! Alice onlyashadow8 <shadowfax8@...> wrote: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hi Alice, I received the same types of criticism/confusion from my family/friends. What I found most helpful was to send them all the link to Cranial Technologies website (as well as a few other sites) where they could read all about treatment, medical info., etc. I found their site to be very informative. My friends and family, who had never even heard of the condition, now completely understand. You probably already know it since you're getting the DOC, but just in case, the link is as follows: www.cranialtech.com Also, another great site full of information is: CAPPS Plagio Information And, lastly: www.plagiocephaly.org I found all of these sites contain excellent information to pass along to your friends and family. It is hard enough for us to go through this as parents, but to receive criticism and arguments from our family makes it so much harder - it helps so much to have everyone understanding the condition and the reasoning for treatment. Hope this helps! Please let me know if you have any questions as I have been down the same road... Very best to you and your child, Mommy to Wes - 5 months old - DOCband since 3/10 - Dallas, TX In a message dated 3/28/2006 10:58:47 A.M. Central Standard Time, thealbgirl2004dc@... writes: I apologize if this question is obvious or repetitive, but does anyone know of any articles online that I can send to my inlaws that explain the medical reasons for treating plagio? I'm embarrassed to admit that I don't really know what the medical reasons are for treating plagio--we just wanted our baby's head to not look flat and dented! I'll provide a little background here: this is more of a vent, but my husband and I are receiving a lot of criticism from my inlaws (his parents) for putting our 10 month old in a DOC band. When I explained that there were medical reasons and that it wasn't just cosmetic, they literally scoffed (well laughed, really) at me. Unfortunately I wasn't armed with a lot of specific facts about what can happen medically if it's untreated. Our daughter's plagio was classified as moderate and our ped didn't really think it was that necessary to treat, but he gave us a referral anyway, we decided to do it and the insurance co covered it. Unfortunately that still has not quelled the criticism from the inlaws. Any advice?? Thanks in advance! Alice onlyashadow8 <shadowfax8@...> wrote: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I apologize if this question is obvious or repetitive, but does anyone know of any articles online that I can send to my inlaws that explain the medical reasons for treating plagio? I'm embarrassed to admit that I don't really know what the medical reasons are for treating plagio--we just wanted our baby's head to not look flat and dented! I'll provide a little background here: this is more of a vent, but my husband and I are receiving a lot of criticism from my inlaws (his parents) for putting our 10 month old in a DOC band. When I explained that there were medical reasons and that it wasn't just cosmetic, they literally scoffed (well laughed, really) at me. Unfortunately I wasn't armed with a lot of specific facts about what can happen medically if it's untreated. Our daughter's plagio was classified as moderate and our ped didn't really think it was that necessary to treat, but he gave us a referral anyway, we decided to do it and the insurance co covered it. Unfortunately that still has not quelled the criticism from the inlaws. Any advice?? Thanks in advance! Alice onlyashadow8 <shadowfax8@...> wrote: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I apologize if this question is obvious or repetitive, but does anyone know of any articles online that I can send to my inlaws that explain the medical reasons for treating plagio? I'm embarrassed to admit that I don't really know what the medical reasons are for treating plagio--we just wanted our baby's head to not look flat and dented! I'll provide a little background here: this is more of a vent, but my husband and I are receiving a lot of criticism from my inlaws (his parents) for putting our 10 month old in a DOC band. When I explained that there were medical reasons and that it wasn't just cosmetic, they literally scoffed (well laughed, really) at me. Unfortunately I wasn't armed with a lot of specific facts about what can happen medically if it's untreated. Our daughter's plagio was classified as moderate and our ped didn't really think it was that necessary to treat, but he gave us a referral anyway, we decided to do it and the insurance co covered it. Unfortunately that still has not quelled the criticism from the inlaws. Any advice?? Thanks in advance! Alice onlyashadow8 <shadowfax8@...> wrote: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column.-Amymother to Noah, 7 months, STARbanded 3/17/06>> I was reading Dear Abby and thinking about how many> others read her column. Several times people have> written in asking her to get the word out about an> important topic, and she does. What if several of us> wrote a brief letter describing Plagiocephaly (and> Torticollis) and maybe how doctors & insurance are> wrongly thinking of it as "just cosmetic"? It might> grab her attention enough to run one of them. I'm> tired of reading about how many doctors don't have a> clue about either subject- nor do they seem to think> it's important to learn about them! Every major> newspaper would run it, which might catch THEIR> attention enough to do individual stories.> http://www.dearabby.com> > Audrey> 7 mo, DOC Band 1/23/2006> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Alice, I can commiserate with you. I got and continue to get loads of criticisms from my in-laws. My in-laws scoffed (i.e. laughed) at me for putting my four-month-old son in a DOC Band. Even after I explained the medical reasons and gave my in-laws web sites and research info, they refused to accept my son’s condition. My in-laws even disagreed with a top pediatric neurosurgeon in the country who told me that my son needed the DOC band and wouldn’t get any correction (flattening and facial asymmetry) without it. Of course, I was and still am livid with my in-laws about getting the DOC band. However, I don’t think my in-laws will ever understand why my son needs it. And I’ve decided that I need to conserve my energy for the weekly adjustments, pt, etc. Here are some suggestions on how you can cope with it and not become a victim or let it affect your marriage. Tell your in-laws how upset they made you and how much you’re trying to do everything possible for your daughter. Thank them for their concern, advice and suggestions – saying, “(in-laws), I appreciate your suggestions, but this is my daughter, not yours.” Ask if this was their daughter whether they would have done everything possible to correct the problem. Use your husband’s grandparents as ammunition if needed and remind them how you were hoping that they either emulated or didn’t imitate them. Write a letter or e-mail message saying how much they’ve hurt your feelings when you were looking for their support. Make your daughter’s condition a taboo subject and talk about anything else but it. I’ve quickly discovered that it’s really a matter of setting limits and boundaries with your parents and in-laws once you have a child. Some parents have a hard time letting go and seeing their children as adults who do not need or appreciate their unsolicited advice and suggestions. I think it’s something many new parents struggle with, though more exacerbated with a baby who has medical needs. Remember, too, some people refuse to accept a medical condition like plagio or disability if it’s not visible to them. It seems that if they can’t see it, then it doesn’t exist. But we know that not every medical condition or disability is always visible. Good luck. Let me know how it goes. You never know, you may have more success than me!!! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Alice Bishop Sent: Tuesday, March 28, 2006 11:46 AM Plagiocephaly Subject: Re: Re: Idea to get word out? I apologize if this question is obvious or repetitive, but does anyone know of any articles online that I can send to my inlaws that explain the medical reasons for treating plagio? I'm embarrassed to admit that I don't really know what the medical reasons are for treating plagio--we just wanted our baby's head to not look flat and dented! I'll provide a little background here: this is more of a vent, but my husband and I are receiving a lot of criticism from my inlaws (his parents) for putting our 10 month old in a DOC band. When I explained that there were medical reasons and that it wasn't just cosmetic, they literally scoffed (well laughed, really) at me. Unfortunately I wasn't armed with a lot of specific facts about what can happen medically if it's untreated. Our daughter's plagio was classified as moderate and our ped didn't really think it was that necessary to treat, but he gave us a referral anyway, we decided to do it and the insurance co covered it. Unfortunately that still has not quelled the criticism from the inlaws. Any advice?? Thanks in advance! Alice onlyashadow8 <shadowfax8@...> wrote: I'd certainly be willing to help out with this, since I believe that my husband and I contributed to my son's plagio because we didn't know any better. The information about plagio needs to be better linked to the SIDS information, and awareness needs to be raised that this is not a cosmetic problem and that insurance should cover its treatment. If we decide to do it, maybe we should coordinate the letters so that everyone is communicating essentially the same message--maybe that way it'll have a greater chance of turning into a column. -Amy mother to Noah, 7 months, STARbanded 3/17/06 --- In Plagiocephaly , Audrey <isdfc@...> wrote: > > I was reading Dear Abby and thinking about how many > others read her column. Several times people have > written in asking her to get the word out about an > important topic, and she does. What if several of us > wrote a brief letter describing Plagiocephaly (and > Torticollis) and maybe how doctors & insurance are > wrongly thinking of it as " just cosmetic " ? It might > grab her attention enough to run one of them. I'm > tired of reading about how many doctors don't have a > clue about either subject- nor do they seem to think > it's important to learn about them! Every major > newspaper would run it, which might catch THEIR > attention enough to do individual stories. > http://www.dearabby.com > > Audrey > 7 mo, DOC Band 1/23/2006 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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