Re: New to group-sorry so long!!!

[Guest guest]

Hi Tamara,

So do you live in Phoenix? I'm sure along with the CT scan the

neuro will do a few muscle tests. Many babies with torticollis are

really late to crawl and walk. Are you in physical therapy yet?

The eye test is to help determine the cause of his head tilt if it

is not muscular torticollis. You might consider checking out

www.torticolliskids.org for more information.

Welcome to the group and good luck on Monday!

Natasha

Atlanta, GA

>

> Hello All...I have been reading the posts and learning a great

deal

> from this group. My son, , is 9 1/2 mo and we had been

asking

> the ped from his 2 mo check up about his flat spot and tilt to the

> right. Each time I got the response that it would round itself out

> and he would keep a check on it and wrote in 's file. Same

at

> 4 mo and 6 mo check ups said we will give it til he's 9 mo and if

at

> the very latest of 1 year. I was at my wits end, and my mother-in-

> law was beginning to stress as well, which stressed me out more.

> (LOL) Anyway, (this is bad to say but by a stroke of luck/fate)

> started tugging at his ear one day and got a wheezing like

> noisy cough so to the ped we went (6 1/2 mo) The on call ped

looked

> at him since ours was at a diffrnt office that day - & as soon as

she

> walked in the room, the first thing she said, " Are you doing

> anything about his head shape? " -not hello not just that- I about

> fell over, I told her to check the file. She immediatley sent us

to

> CT for an evaluation. I was scared and nervous, not knowing

anything

> about this...Anyway, to shorten this up, we had our eval and he

has

> 10mm assymetry and torticollis and plagio. (We questioned over

and

> over to the ped b-cuz his face was shifting to the side and the

top

> view showed his ears were seriously offset.) Come to find out our

ped

> is not a " banding " guy....my opinion is he's not paying for it so

who

> cares what he thinks about it-it is the well being of my child and

my

> decision to make...I could go on and on....Needless to say, we

were

> casted and received the DOCband on 10/29 and my lil angel is doing

> great. Better than me...we had a few episodes in public but noone

> ended up hurt so all is good..(LOL) It has been 4 weeks banded and

I

> am regretting not forcing the subject earlier, but the posts on

this

> site have really calmed me down alot. We just went in for his 9 mo

> c/u and he is not standing on his legs or trying to crawl so our

ped

> said its off to the neurologist for a CT Scan...I broke down in

his

> office, for the first time I cried my guts out, off and on all day

it

> seemed... I hadn't cried about all of this at that point. We see

the

> neurologist on Monday(12/6) @ Phx Childrens Hospital and then he

goes

> to the Ped Eye Specialist...something about protective reflex and

> depth perception???? Now I am worried, is this normal to check

on.

> Could there be other underlying problems??? I know he was 8 mo old

> when we banded him, but he sits up and does everything besides

> standing and crawling, what do I expect for Monday visit???? I

am a

> nervous wreck and am driving my hubby insane w/ what he refers to

> as " mommy panic " - I also have a 2 1/2 year old daughter ( no

> plagio w/her) I don't get it?????

> Sorry for the long version of this but it sures feels good to have

> this all out now....thanks for all the good info and the

> support...I've gone through the photos and all these babies are

> adorable, and I feel like I know everyone....Have a great day and

> thanks again for any info with the neurologist and anything else.

>

> P.S. - I went through the whole mess w/ waiting on CIGNA who

finally

> approved his band after 8 weeks of phone calls and fighting

and...I

> guess one thing went well so far...

>

> Tamara

> ('s mom 9 mo)

> (Plagio/tort - DOCband)

[Guest guest]

Hi Tamara, Welcome to the group. I'm so glad you found it. Good

luck on Monday. I think it will be reassurring for you to check this

out now and put your fears to rest. I would be nervous too but

chances are he is developing just fine. I'm so happy that he is

receiving the treatment he needs. Good for you.

Sue

Colin F., 14 mos.

STARband grad 9/04

>

> Hello All...I have been reading the posts and learning a great deal

> from this group. My son, , is 9 1/2 mo and we had been

asking

> the ped from his 2 mo check up about his flat spot and tilt to the

> right. Each time I got the response that it would round itself out

> and he would keep a check on it and wrote in 's file. Same

at

> 4 mo and 6 mo check ups said we will give it til he's 9 mo and if

at

> the very latest of 1 year. I was at my wits end, and my mother-in-

> law was beginning to stress as well, which stressed me out more.

> (LOL) Anyway, (this is bad to say but by a stroke of luck/fate)

> started tugging at his ear one day and got a wheezing like

> noisy cough so to the ped we went (6 1/2 mo) The on call ped looked

> at him since ours was at a diffrnt office that day - & as soon as

she

> walked in the room, the first thing she said, " Are you doing

> anything about his head shape? " -not hello not just that- I about

> fell over, I told her to check the file. She immediatley sent us

to

> CT for an evaluation. I was scared and nervous, not knowing

anything

> about this...Anyway, to shorten this up, we had our eval and he has

> 10mm assymetry and torticollis and plagio. (We questioned over and

> over to the ped b-cuz his face was shifting to the side and the top

> view showed his ears were seriously offset.) Come to find out our

ped

> is not a " banding " guy....my opinion is he's not paying for it so

who

> cares what he thinks about it-it is the well being of my child and

my

> decision to make...I could go on and on....Needless to say, we were

> casted and received the DOCband on 10/29 and my lil angel is doing

> great. Better than me...we had a few episodes in public but noone

> ended up hurt so all is good..(LOL) It has been 4 weeks banded and

I

> am regretting not forcing the subject earlier, but the posts on

this

> site have really calmed me down alot. We just went in for his 9 mo

> c/u and he is not standing on his legs or trying to crawl so our

ped

> said its off to the neurologist for a CT Scan...I broke down in his

> office, for the first time I cried my guts out, off and on all day

it

> seemed... I hadn't cried about all of this at that point. We see

the

> neurologist on Monday(12/6) @ Phx Childrens Hospital and then he

goes

> to the Ped Eye Specialist...something about protective reflex and

> depth perception???? Now I am worried, is this normal to check on.

> Could there be other underlying problems??? I know he was 8 mo old

> when we banded him, but he sits up and does everything besides

> standing and crawling, what do I expect for Monday visit???? I am

a

> nervous wreck and am driving my hubby insane w/ what he refers to

> as " mommy panic " - I also have a 2 1/2 year old daughter ( no

> plagio w/her) I don't get it?????

> Sorry for the long version of this but it sures feels good to have

> this all out now....thanks for all the good info and the

> support...I've gone through the photos and all these babies are

> adorable, and I feel like I know everyone....Have a great day and

> thanks again for any info with the neurologist and anything else.

>

> P.S. - I went through the whole mess w/ waiting on CIGNA who

finally

> approved his band after 8 weeks of phone calls and fighting and...I

> guess one thing went well so far...

>

> Tamara

> ('s mom 9 mo)

> (Plagio/tort - DOCband)

[Guest guest]

My son has tort(now resolved) and plagio (Doc Band grad) and low

muscle tone. I know how overwhelming this all is. We had a similar

experience-the doctor told me not to worry about my son's head, it

will round out, blah, blah. We started with a new PT and the FIRST

thing she said was asking us if we were doing anything about his head

shape. That very same day I took him to the nighttime clinic becuase

he got sick and a doctor who we had never seen before said the exact

same thing. Turns our he was 13mm. Still makes me furious.

Don't be too worried (ha, did I say that?) about all the specialist

appts. I think it is good you doc is finally paying attention and

sending you for the appropriate tests and treatment. Most often

torticollis is muscular, but it is important to rule out other

causes. Sometimes tort can be caused by vision problems, or neuro

problems, or bony abnormalities of the neck or spine. Before

starting PT, is is always good to confirm that you are dealing with

muscular tort. Somewhere in those appts you have set up, make sure

that xrays are taken of his neck.

Along with tort often comes motor delays. At 8 months, I don't think

that he is really behind by not standing or crawling. I have learned

that there is a HUGE curve for what is considered normal. 18 months

for walking is still considered normal. Having said that, just

another reason to see these specialists to rule out other problems so

that you know what you are or are not dealing with and can then

pursue the appropriate course of treatment.

If it is muscular tort, than it is very important to start formal PT

ASAP. Some tort kids have low muscle tone which can affect motor

skills as well so you could ask about that-but all that usually means

is more PT (and a little more worry)and they eventually catch up.

My son did not crawl until 14 months and did not walk until 19

months. I have had plenty of sleepless nights worrying, but he is

making great progress.

You should check out 's torticollis board. It has been

tremendously helpful to us.

Dara

Mom to Jonha/21 mo/tort resolved/Doc Band grad/low tone

land

>

> Hello All...I have been reading the posts and learning a great deal

> from this group. My son, , is 9 1/2 mo and we had been

asking

> the ped from his 2 mo check up about his flat spot and tilt to the

> right. Each time I got the response that it would round itself out

> and he would keep a check on it and wrote in 's file. Same

at

> 4 mo and 6 mo check ups said we will give it til he's 9 mo and if

at

> the very latest of 1 year. I was at my wits end, and my mother-in-

> law was beginning to stress as well, which stressed me out more.

> (LOL) Anyway, (this is bad to say but by a stroke of luck/fate)

> started tugging at his ear one day and got a wheezing like

> noisy cough so to the ped we went (6 1/2 mo) The on call ped looked

> at him since ours was at a diffrnt office that day - & as soon as

she

> walked in the room, the first thing she said, " Are you doing

> anything about his head shape? " -not hello not just that- I about

> fell over, I told her to check the file. She immediatley sent us

to

> CT for an evaluation. I was scared and nervous, not knowing

anything

> about this...Anyway, to shorten this up, we had our eval and he has

> 10mm assymetry and torticollis and plagio. (We questioned over and

> over to the ped b-cuz his face was shifting to the side and the top

> view showed his ears were seriously offset.) Come to find out our

ped

> is not a " banding " guy....my opinion is he's not paying for it so

who

> cares what he thinks about it-it is the well being of my child and

my

> decision to make...I could go on and on....Needless to say, we were

> casted and received the DOCband on 10/29 and my lil angel is doing

> great. Better than me...we had a few episodes in public but noone

> ended up hurt so all is good..(LOL) It has been 4 weeks banded and

I

> am regretting not forcing the subject earlier, but the posts on

this

> site have really calmed me down alot. We just went in for his 9 mo

> c/u and he is not standing on his legs or trying to crawl so our

ped

> said its off to the neurologist for a CT Scan...I broke down in his

> office, for the first time I cried my guts out, off and on all day

it

> seemed... I hadn't cried about all of this at that point. We see

the

> neurologist on Monday(12/6) @ Phx Childrens Hospital and then he

goes

> to the Ped Eye Specialist...something about protective reflex and

> depth perception???? Now I am worried, is this normal to check on.

> Could there be other underlying problems??? I know he was 8 mo old

> when we banded him, but he sits up and does everything besides

> standing and crawling, what do I expect for Monday visit???? I am

a

> nervous wreck and am driving my hubby insane w/ what he refers to

> as " mommy panic " - I also have a 2 1/2 year old daughter ( no

> plagio w/her) I don't get it?????

> Sorry for the long version of this but it sures feels good to have

> this all out now....thanks for all the good info and the

> support...I've gone through the photos and all these babies are

> adorable, and I feel like I know everyone....Have a great day and

> thanks again for any info with the neurologist and anything else.

>

> P.S. - I went through the whole mess w/ waiting on CIGNA who

finally

> approved his band after 8 weeks of phone calls and fighting and...I

> guess one thing went well so far...

>

> Tamara

> ('s mom 9 mo)

> (Plagio/tort - DOCband)

[Guest guest]

Hi Tamara,

Welcome to the group! I'm a little late in responding, but please

do let us know how the appt goes today. My daughter has had her

eyes checked as well, but it was b/c she has a tilt w/no tort. I'll

be looking for your update!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com/hannahs_noggin/

>

> Hello All...I have been reading the posts and learning a great

deal

> from this group. My son, , is 9 1/2 mo and we had been

asking

> the ped from his 2 mo check up about his flat spot and tilt to the

> right. Each time I got the response that it would round itself out

> and he would keep a check on it and wrote in 's file. Same

at

> 4 mo and 6 mo check ups said we will give it til he's 9 mo and if

at

> the very latest of 1 year. I was at my wits end, and my mother-in-

> law was beginning to stress as well, which stressed me out more.

> (LOL) Anyway, (this is bad to say but by a stroke of luck/fate)

> started tugging at his ear one day and got a wheezing like

> noisy cough so to the ped we went (6 1/2 mo) The on call ped

looked

> at him since ours was at a diffrnt office that day - & as soon as

she

> walked in the room, the first thing she said, " Are you doing

> anything about his head shape? " -not hello not just that- I about

> fell over, I told her to check the file. She immediatley sent us

to

> CT for an evaluation. I was scared and nervous, not knowing

anything

> about this...Anyway, to shorten this up, we had our eval and he

has

> 10mm assymetry and torticollis and plagio. (We questioned over

and

> over to the ped b-cuz his face was shifting to the side and the

top

> view showed his ears were seriously offset.) Come to find out our

ped

> is not a " banding " guy....my opinion is he's not paying for it so

who

> cares what he thinks about it-it is the well being of my child and

my

> decision to make...I could go on and on....Needless to say, we

were

> casted and received the DOCband on 10/29 and my lil angel is doing

> great. Better than me...we had a few episodes in public but noone

> ended up hurt so all is good..(LOL) It has been 4 weeks banded and

I

> am regretting not forcing the subject earlier, but the posts on

this

> site have really calmed me down alot. We just went in for his 9 mo

> c/u and he is not standing on his legs or trying to crawl so our

ped

> said its off to the neurologist for a CT Scan...I broke down in

his

> office, for the first time I cried my guts out, off and on all day

it

> seemed... I hadn't cried about all of this at that point. We see

the

> neurologist on Monday(12/6) @ Phx Childrens Hospital and then he

goes

> to the Ped Eye Specialist...something about protective reflex and

> depth perception???? Now I am worried, is this normal to check

on.

> Could there be other underlying problems??? I know he was 8 mo old

> when we banded him, but he sits up and does everything besides

> standing and crawling, what do I expect for Monday visit???? I

am a

> nervous wreck and am driving my hubby insane w/ what he refers to

> as " mommy panic " - I also have a 2 1/2 year old daughter ( no

> plagio w/her) I don't get it?????

> Sorry for the long version of this but it sures feels good to have

> this all out now....thanks for all the good info and the

> support...I've gone through the photos and all these babies are

> adorable, and I feel like I know everyone....Have a great day and

> thanks again for any info with the neurologist and anything else.

>

> P.S. - I went through the whole mess w/ waiting on CIGNA who

finally

> approved his band after 8 weeks of phone calls and fighting

and...I

> guess one thing went well so far...

>

> Tamara

> ('s mom 9 mo)

> (Plagio/tort - DOCband)