Re: totally confused and frustrated

[Guest guest]

Carolyn- I am pretty new to all of this as my son has had his helmet for 2 weeks and is now 4 months old, but I think we have some things in common. Braden was born with plagio and mild tort - but no one ever mentioned it until he was 2 months old - I never realized there was a problem (shame on me). At two months we began diligently repositioning him and doing neck exercises. For Braden the back right side was very flat, the crown of his head was very high (looked slanted from the front) and the sides of his head stuck out. After working on this for 2 1/2 months, we made an appointment with a STARband provider and got him scanned. Well, from all the attempts at repositioning, what we managed to do was make him a brachy baby with a mild case of plagio. While we failed at our attempt to repo, I know I did everything I could for him. I personally think it just isn't possible to repo some babies. All this being said, if

it were me I think I would go ahead and move forward with the band since CT did recommend. Your not the first to say that they didn't measure but did a visual. As a matter of fact, our Ortho told us when we sat down that he felt Braden was a moderate to severe brachy before he ever scanned him and he was right. So they do have trained eyes. If it bothers you, I would just go for it. As for the PT, keep in mind that not everyone sees the band/helmet as being a good or necessary thing. You will also see with this group that a lot of parents were told by their ped that their babies would outgrow it and they didn't. Personally, it has been wonderful for us. Braden has only been in it for 2 weeks and we already see progress. I wish you the very best of luck in your decision; I know it is a very tough and very personal one. When we had to make the decision and finally decided to move forward, it was b/c we did not want to wake

up a year from now and say what if we had gotten the helmet. Heidi Mom to Braden - Starband 02/17/06 carolyn fox <cdfox@...> wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and

that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies. PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling

excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...For more plagio info

[Guest guest]

Carolyn- I am pretty new to all of this as my son has had his helmet for 2 weeks and is now 4 months old, but I think we have some things in common. Braden was born with plagio and mild tort - but no one ever mentioned it until he was 2 months old - I never realized there was a problem (shame on me). At two months we began diligently repositioning him and doing neck exercises. For Braden the back right side was very flat, the crown of his head was very high (looked slanted from the front) and the sides of his head stuck out. After working on this for 2 1/2 months, we made an appointment with a STARband provider and got him scanned. Well, from all the attempts at repositioning, what we managed to do was make him a brachy baby with a mild case of plagio. While we failed at our attempt to repo, I know I did everything I could for him. I personally think it just isn't possible to repo some babies. All this being said, if

it were me I think I would go ahead and move forward with the band since CT did recommend. Your not the first to say that they didn't measure but did a visual. As a matter of fact, our Ortho told us when we sat down that he felt Braden was a moderate to severe brachy before he ever scanned him and he was right. So they do have trained eyes. If it bothers you, I would just go for it. As for the PT, keep in mind that not everyone sees the band/helmet as being a good or necessary thing. You will also see with this group that a lot of parents were told by their ped that their babies would outgrow it and they didn't. Personally, it has been wonderful for us. Braden has only been in it for 2 weeks and we already see progress. I wish you the very best of luck in your decision; I know it is a very tough and very personal one. When we had to make the decision and finally decided to move forward, it was b/c we did not want to wake

up a year from now and say what if we had gotten the helmet. Heidi Mom to Braden - Starband 02/17/06 carolyn fox <cdfox@...> wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and

that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies. PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling

excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...For more plagio info

[Guest guest]

carolyn - hang in there..I totally know how you feel and what you are going through. And CT did not do measurements for us either, neither did the specialist, but the PT did provide us with a CVA measurement (there are others too). Our son's CVA was 7.2mm at 3.5 months and improved to 3.3mm at 7 months (current age). We originally met with the PT per the advice of our Peditrician, (at 3 months) as he was concerned that he might have had tort. I've been advised from the 'experts' and members in the group that measurements are not the only thing to go by and that they might not necessarily be exact, but they do help to give some perspective as to how mild, moderate or severe the case is. 3.3 is considered mild. I'll dig up the measurement ranges a member gave me and send them -- helpful to know. The one measurement we have, has put things into perspective for us and we decided to wait a bit

longer as he naturally has improved. It bothers me that CT will only do measurements if insurance requires it, however I have heard from other people on the board that their CT office did do measurments for them! Additionally, CT was quick to diagnose our baby with tort when we consulted with them. I was shocked and concerend b/c at his 4 month check up with the PT she verified he didn't. So after the consult I went back to the PT -- just recently and the baby is now 7 months old and she did a through exam and determined he didn't have tort -- so that quick mis-diagnosis also concerned me. Additionally, CT has this template on their site which they say they use to assess the severity of plagio,but they never offered to use it for us. Find it on their website: http://www.cranialtech.com/medicalinfo/identifyplagio.html and click on the link (bottom of page) "Severity

Assessment for Plagio". Guess it depends on who you get. We went to the CT located in Connecticut. I think the only 'person' who has the ability to fix the assymmetries and flatness is mother nature. It's a tough place to be -- to make a decision that is more personal than medical in nature. suzannecarolyn fox <cdfox@...> wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times

a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s

condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies. PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

carolyn - hang in there..I totally know how you feel and what you are going through. And CT did not do measurements for us either, neither did the specialist, but the PT did provide us with a CVA measurement (there are others too). Our son's CVA was 7.2mm at 3.5 months and improved to 3.3mm at 7 months (current age). We originally met with the PT per the advice of our Peditrician, (at 3 months) as he was concerned that he might have had tort. I've been advised from the 'experts' and members in the group that measurements are not the only thing to go by and that they might not necessarily be exact, but they do help to give some perspective as to how mild, moderate or severe the case is. 3.3 is considered mild. I'll dig up the measurement ranges a member gave me and send them -- helpful to know. The one measurement we have, has put things into perspective for us and we decided to wait a bit

longer as he naturally has improved. It bothers me that CT will only do measurements if insurance requires it, however I have heard from other people on the board that their CT office did do measurments for them! Additionally, CT was quick to diagnose our baby with tort when we consulted with them. I was shocked and concerend b/c at his 4 month check up with the PT she verified he didn't. So after the consult I went back to the PT -- just recently and the baby is now 7 months old and she did a through exam and determined he didn't have tort -- so that quick mis-diagnosis also concerned me. Additionally, CT has this template on their site which they say they use to assess the severity of plagio,but they never offered to use it for us. Find it on their website: http://www.cranialtech.com/medicalinfo/identifyplagio.html and click on the link (bottom of page) "Severity

Assessment for Plagio". Guess it depends on who you get. We went to the CT located in Connecticut. I think the only 'person' who has the ability to fix the assymmetries and flatness is mother nature. It's a tough place to be -- to make a decision that is more personal than medical in nature. suzannecarolyn fox <cdfox@...> wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times

a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s

condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies. PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Carolyn - On the PT front. My PT showed me some great alternative ways to do the neck stretching which are much friendlier to the baby. I can't really describe them in a e-mail and it's best you have a professional show you. My PT is located in Southern Connecticut. If you are willing to take a trip to consult with my PT, let me know. She is WONDERFUL! I can send you her e-mail and contact info. Just send me your personal e-mail address. SuzanneHeidi Bailes <bailesfam05@...> wrote: Carolyn- I am pretty new to all of this as my son has had his helmet for 2 weeks and is now 4 months old, but I think we have some things in common. Braden was born with plagio and mild tort - but no one ever mentioned it

until he was 2 months old - I never realized there was a problem (shame on me). At two months we began diligently repositioning him and doing neck exercises. For Braden the back right side was very flat, the crown of his head was very high (looked slanted from the front) and the sides of his head stuck out. After working on this for 2 1/2 months, we made an appointment with a STARband provider and got him scanned. Well, from all the attempts at repositioning, what we managed to do was make him a brachy baby with a mild case of plagio. While we failed at our attempt to repo, I know I did everything I could for him. I personally think it just isn't possible to repo some babies. All this being said, if it were me I think I would go ahead and move forward with the band since CT did recommend. Your not the first to say that they didn't measure but did a visual. As a matter of fact, our Ortho told us when we sat down that he felt Braden was a moderate to

severe brachy before he ever scanned him and he was right. So they do have trained eyes. If it bothers you, I would just go for it. As for the PT, keep in mind that not everyone sees the band/helmet as being a good or necessary thing. You will also see with this group that a lot of parents were told by their ped that their babies would outgrow it and they didn't. Personally, it has been wonderful for us. Braden has only been in it for 2 weeks and we already see progress. I wish you the very best of luck in your decision; I know it is a very tough and very personal one. When we had to make the decision and finally decided to move forward, it was b/c we did not want to wake up a year from now and say what if we had gotten the helmet. Heidi Mom to Braden - Starband 02/17/06 carolyn fox <cdfox@...>

wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results

from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the

base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies.

PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...For more plagio info

[Guest guest]

Carolyn - On the PT front. My PT showed me some great alternative ways to do the neck stretching which are much friendlier to the baby. I can't really describe them in a e-mail and it's best you have a professional show you. My PT is located in Southern Connecticut. If you are willing to take a trip to consult with my PT, let me know. She is WONDERFUL! I can send you her e-mail and contact info. Just send me your personal e-mail address. SuzanneHeidi Bailes <bailesfam05@...> wrote: Carolyn- I am pretty new to all of this as my son has had his helmet for 2 weeks and is now 4 months old, but I think we have some things in common. Braden was born with plagio and mild tort - but no one ever mentioned it

until he was 2 months old - I never realized there was a problem (shame on me). At two months we began diligently repositioning him and doing neck exercises. For Braden the back right side was very flat, the crown of his head was very high (looked slanted from the front) and the sides of his head stuck out. After working on this for 2 1/2 months, we made an appointment with a STARband provider and got him scanned. Well, from all the attempts at repositioning, what we managed to do was make him a brachy baby with a mild case of plagio. While we failed at our attempt to repo, I know I did everything I could for him. I personally think it just isn't possible to repo some babies. All this being said, if it were me I think I would go ahead and move forward with the band since CT did recommend. Your not the first to say that they didn't measure but did a visual. As a matter of fact, our Ortho told us when we sat down that he felt Braden was a moderate to

severe brachy before he ever scanned him and he was right. So they do have trained eyes. If it bothers you, I would just go for it. As for the PT, keep in mind that not everyone sees the band/helmet as being a good or necessary thing. You will also see with this group that a lot of parents were told by their ped that their babies would outgrow it and they didn't. Personally, it has been wonderful for us. Braden has only been in it for 2 weeks and we already see progress. I wish you the very best of luck in your decision; I know it is a very tough and very personal one. When we had to make the decision and finally decided to move forward, it was b/c we did not want to wake up a year from now and say what if we had gotten the helmet. Heidi Mom to Braden - Starband 02/17/06 carolyn fox <cdfox@...>

wrote: I am now totally confused and frustrated with my son Malcolm’s plagio and tort. As a reminder, Malcolm was born breech with plagio and tort; he’s now four months old and has been in PT for 5 weeks. Yesterday, we went to cranial technologies in Paramus, NJ for our free evaluation. Wanda Cameron evaluated Malcolm and recommended the helmet immediately to restore his flattening and facial symmetry (eyes, ears, cheeks). She asked if we tried repositioning and if so for how long. I told her that our pediatrician said Malcolm had plagio and tort five days after he was born. I said that we’ve been diligently repositioning him and turning his head since the first month. We’ve been seeing a physical therapist for five weeks and have been doing various exercises diligently four times a day too, as well as tummy time each time Malcolm’s awake. Wanda Cameron at cranial technologies said that we should have noticed results

from repositioning by now. She said that sometimes repositioning works, but other times it doesn’t. More importantly, she said that restoring Malcolm’s flattening and facial symmetry (eyes, ears, cheeks) were out of my control to fix. She asked if we saw any improvement or deterioration since he was born and in PT. I said that we have seen improvement with his neck, but not with his head shape or symmetry. Today, I saw our PT and she made me feel like Malcolm’s head shape and symmetry were in my control to fix. She said I should apply pressure with my fingertips underneath the

base of his skull. She also made me feel like I haven’t been diligent enough with the exercises or resisting doing them. Of course, this made me feel terrible. Between the pediatrician, cranial technologies, and the PT, I totally perplexed whether this is in my ability to control or not and what the state of my son’s condition is. Cranial technologies didn’t do any measurements, even though I asked, because she said it was a “visual thing” and that my son’s flattening and facial symmetry was noticeable from sight. Our pediatrician said that he’s got flattening and facial asymmetry, but hasn’t mentioned or measured the severity of it, though he recommended me to the PT and to cranial technologies.

PT says that it’s mild and believes it can be remedy through pt. Who and what am I supposed to believe? To really make matters worse, Malcolm is now teething! He’s irritable, drooling excessively and resisting some of the exercises. When it rains, it pours. Thanks, Carolyn in NYC Mum to Malcolm cdfox@...For more plagio info

[Guest guest]

Suzanne,

I don't think they typically hand out the severity assessment at

evaluations. I have never gotten one.

Dane was discharged twice from PT before he was banded. We were told he

really didn't have concerns. When we went for his evaluation he got put

back into PT. He actually did still have it. He went back to PT for

months. The first PT didn't really have a tort background.

[Guest guest]

Suzanne,

I don't think they typically hand out the severity assessment at

evaluations. I have never gotten one.

Dane was discharged twice from PT before he was banded. We were told he

really didn't have concerns. When we went for his evaluation he got put

back into PT. He actually did still have it. He went back to PT for

months. The first PT didn't really have a tort background.