Re: The need to increase awareness

[Guest guest]

Thanx for the story Lori. That must have been really frustrating.

It's sad tho that we trust in our doctors so much to steer us in the right

direction, and when they are wrong....

You did your best, and hopefully that girl will go home and think about

what you said. Maybe her mom should give her head a shake too!

After all, she probably gives a lot of guidance to her daughter.

Kendra

Lori wrote:

HI All!

I just had to share my experience today. I have an 18

yr old cousin (actually my cousins dtr) that is having

a baby in November. Today was her baby shower. All

of her little girlfriends were there- several have

babies. One girl was there with her baby and her mom.

After the shower was over she put the baby in the

middle of the floor and he was playing with a toy. I

looked at him and immediately noticed his head shape.

His left cheek was narrow, right was full, ears were

badly misaligned, and he had an extreme flat spot on

the right rear of his head. He had a slight left

tilt and was rotated slightly to the right. I sat

down on the floor with them and asked how old he is.

13 months. Still having a bit of trouble crawling.

trying to pull up but not there yet. The mom went on

to tell me that he was a twin. I asked casually if

either of her twins had problems with their neck

tilting. She said, "ya one of um- I asked the doctor

about it- it is fine- there isn't anything wrong with

him!" I said I knew there wasn't anything wrong with

him. I told her about my battle with Lexi and tort

and she insisted that nothing was wrong with her son.

She did however go on to tell me that the one she left

at home was the one that had the tilt- not this one.

Weird. I picked up on the signs of plagio immediately

on seeing this kid. Why did her doctors not tell

her????????? If this one is the better of the two-

what does the other one look like???? I am scared to

think of it.

Just another example of how ignorant to this problem

the system is. I feel bad for young mothers who don't

have the support system around them to make them push

for what is in the best interest of their children.

Has anyone noticed that most (yes I know not all!!) of

us are over 25?? Someone really needs to get through

to the younger moms out there. Doctors should be

doing it but apparently they are not.

Thanks for listening - had to vent. I was ranting to

my sister at the shower but I had to tell you all

since I am sure you can understand my frustration.

God Bless our children and those who aren't getting

the treatment that they need.

Lori and Lexi (4-5-99)

__________________________________________________

[Guest guest]

This sounds like it happening more and more!!!!!!!!!! I just got on this email list because my child had torticollis and now is going to a neuro. tomorrow. My ped. dr. said that my son's head would shape-up and it didn't, but I hope we are not too late. Many people put trust in doctors and don't follow what they believe and they see. I am very aware now of my baby and others. Please help your cousin and her friends. The child's life could be changed because of YOU!!!!

I would like to talk with any parents that had children with torticollis and now have plag. Please give me some good information. I don't know what to expect tomorrow at the doctor's visit. Will they do a CT scan to rule out other problems? Please help!!

----- Original Message -----

From: & Kendra

Plagiocephalyegroups

Sent: Sunday, October 15, 2000 8:43 PM

Subject: Re: The need to increase awareness

Thanx for the story Lori. That must have been really frustrating. It's sad tho that we trust in our doctors so much to steer us in the right direction, and when they are wrong.... You did your best, and hopefully that girl will go home and think about what you said. Maybe her mom should give her head a shake too! After all, she probably gives a lot of guidance to her daughter. Kendra Lori wrote: HI All! I just had to share my experience today. I have an 18 yr old cousin (actually my cousins dtr) that is having a baby in November. Today was her baby shower. All of her little girlfriends were there- several have babies. One girl was there with her baby and her mom. After the shower was over she put the baby in the middle of the floor and he was playing with a toy. I looked at him and immediately noticed his head shape. His left cheek was narrow, right was full, ears were badly misaligned, and he had an extreme flat spot on the right rear of his head. He had a slight left tilt and was rotated slightly to the right. I sat down on the floor with them and asked how old he is. 13 months. Still having a bit of trouble crawling. trying to pull up but not there yet. The mom went on to tell me that he was a twin. I asked casually if either of her twins had problems with their neck tilting. She said, "ya one of um- I asked the doctor about it- it is fine- there isn't anything wrong with him!" I said I knew there wasn't anything wrong with him. I told her about my battle with Lexi and tort and she insisted that nothing was wrong with her son. She did however go on to tell me that the one she left at home was the one that had the tilt- not this one. Weird. I picked up on the signs of plagio immediately on seeing this kid. Why did her doctors not tell her????????? If this one is the better of the two- what does the other one look like???? I am scared to think of it. Just another example of how ignorant to this problem the system is. I feel bad for young mothers who don't have the support system around them to make them push for what is in the best interest of their children. Has anyone noticed that most (yes I know not all!!) of us are over 25?? Someone really needs to get through to the younger moms out there. Doctors should be doing it but apparently they are not. Thanks for listening - had to vent. I was ranting to my sister at the shower but I had to tell you all since I am sure you can understand my frustration. God Bless our children and those who aren't getting the treatment that they need. Lori and Lexi (4-5-99) __________________________________________________

[Guest guest]

Steve & Betty:

Here is a link to our Q & A file. Torticollis almost always

coincides with plagio., so you are definitely not alone here!

Your doctor may want to do x-rays or a CT scan to rule out craniosynostosis,

but don't worry, cranio. is rare in comparison to plagio.!

Please feel free to jump in with any more questions you may have.

How old is you baby?

Glad you found us!

Kendra

Steve & Betty wrote:

This

sounds like it happening more and more!!!!!!!!!! I just got on this

email list because my child had torticollis and now is going to a neuro.

tomorrow. My ped. dr. said that my son's head would shape-up and

it didn't, but I hope we are not too late. Many people put trust

in doctors and don't follow what they believe and they see. I am

very aware now of my baby and others. Please help your cousin and

her friends. The child's life could be changed because of YOU!!!! I

would like to talk with any parents that had children with torticollis

and now have plag. Please give me some good information.

I don't know what to expect tomorrow at

the doctor's visit. Will they do a CT scan to rule out other problems?

Please help!!

----- Original Message -----

From:

& Kendra

Plagiocephalyegroups

Sent: Sunday, October 15, 2000 8:43

PM

Subject: Re: The need to

increase awareness

Thanx for the story Lori. That must have been really frustrating.

It's sad tho that we trust in our doctors so much to steer us in the right

direction, and when they are wrong....

You did your best, and hopefully that girl will go home and think about

what you said. Maybe her mom should give her head a shake too!

After all, she probably gives a lot of guidance to her daughter.

Kendra

Lori wrote:

HI All!

I just had to share my experience today. I have an 18

yr old cousin (actually my cousins dtr) that is having

a baby in November. Today was her baby shower. All

of her little girlfriends were there- several have

babies. One girl was there with her baby and her mom.

After the shower was over she put the baby in the

middle of the floor and he was playing with a toy. I

looked at him and immediately noticed his head shape.

His left cheek was narrow, right was full, ears were

badly misaligned, and he had an extreme flat spot on

the right rear of his head. He had a slight left

tilt and was rotated slightly to the right. I sat

down on the floor with them and asked how old he is.

13 months. Still having a bit of trouble crawling.

trying to pull up but not there yet. The mom went on

to tell me that he was a twin. I asked casually if

either of her twins had problems with their neck

tilting. She said, "ya one of um- I asked the doctor

about it- it is fine- there isn't anything wrong with

him!" I said I knew there wasn't anything wrong with

him. I told her about my battle with Lexi and tort

and she insisted that nothing was wrong with her son.

She did however go on to tell me that the one she left

at home was the one that had the tilt- not this one.

Weird. I picked up on the signs of plagio immediately

on seeing this kid. Why did her doctors not tell

her????????? If this one is the better of the two-

what does the other one look like???? I am scared to

think of it.

Just another example of how ignorant to this problem

the system is. I feel bad for young mothers who don't

have the support system around them to make them push

for what is in the best interest of their children.

Has anyone noticed that most (yes I know not all!!) of

us are over 25?? Someone really needs to get through

to the younger moms out there. Doctors should be

doing it but apparently they are not.

Thanks for listening - had to vent. I was ranting to

my sister at the shower but I had to tell you all

since I am sure you can understand my frustration.

God Bless our children and those who aren't getting

the treatment that they need.

Lori and Lexi (4-5-99)

__________________________________________________

[Guest guest]

Sorry!!! Guess I should add the link!

Q & A

file....

& Kendra wrote:

Steve & Betty:

Here is a link to our Q & A file. Torticollis almost always

coincides with plagio., so you are definitely not alone here!

Your doctor may want to do x-rays or a CT scan to rule out craniosynostosis,

but don't worry, cranio. is rare in comparison to plagio.!

Please feel free to jump in with any more questions you may have.

How old is you baby?

Glad you found us!

Kendra

Steve & Betty wrote:

This

sounds like it happening more and more!!!!!!!!!! I just got on this

email list because my child had torticollis and now is going to a neuro.

tomorrow. My ped. dr. said that my son's head would shape-up and

it didn't, but I hope we are not too late. Many people put trust

in doctors and don't follow what they believe and they see. I am

very aware now of my baby and others. Please help your cousin and

her friends. The child's life could be changed because of YOU!!!!

I would like to talk with any parents

that had children with torticollis and now have plag. Please give

me some good information.I don't know what to expect tomorrow at the doctor's

visit. Will they do a CT scan to rule out other problems? Please

help!!

----- Original Message -----

From:

& Kendra

Plagiocephalyegroups

Sent: Sunday, October 15, 2000 8:43

PM

Subject: Re: The need to

increase awareness

Thanx for the story Lori. That must have been really frustrating.

It's sad tho that we trust in our doctors so much to steer us in the right

direction, and when they are wrong....

You did your best, and hopefully that girl will go home and think about

what you said. Maybe her mom should give her head a shake too!

After all, she probably gives a lot of guidance to her daughter.

Kendra

Lori wrote:

HI All!

I just had to share my experience today. I have an 18

yr old cousin (actually my cousins dtr) that is having

a baby in November. Today was her baby shower. All

of her little girlfriends were there- several have

babies. One girl was there with her baby and her mom.

After the shower was over she put the baby in the

middle of the floor and he was playing with a toy. I

looked at him and immediately noticed his head shape.

His left cheek was narrow, right was full, ears were

badly misaligned, and he had an extreme flat spot on

the right rear of his head. He had a slight left

tilt and was rotated slightly to the right. I sat

down on the floor with them and asked how old he is.

13 months. Still having a bit of trouble crawling.

trying to pull up but not there yet. The mom went on

to tell me that he was a twin. I asked casually if

either of her twins had problems with their neck

tilting. She said, "ya one of um- I asked the doctor

about it- it is fine- there isn't anything wrong with

him!" I said I knew there wasn't anything wrong with

him. I told her about my battle with Lexi and tort

and she insisted that nothing was wrong with her son.

She did however go on to tell me that the one she left

at home was the one that had the tilt- not this one.

Weird. I picked up on the signs of plagio immediately

on seeing this kid. Why did her doctors not tell

her????????? If this one is the better of the two-

what does the other one look like???? I am scared to

think of it.

Just another example of how ignorant to this problem

the system is. I feel bad for young mothers who don't

have the support system around them to make them push

for what is in the best interest of their children.

Has anyone noticed that most (yes I know not all!!) of

us are over 25?? Someone really needs to get through

to the younger moms out there. Doctors should be

doing it but apparently they are not.

Thanks for listening - had to vent. I was ranting to

my sister at the shower but I had to tell you all

since I am sure you can understand my frustration.

God Bless our children and those who aren't getting

the treatment that they need.

Lori and Lexi (4-5-99)

__________________________________________________