Re: & Trent, mild plagio - difficult decision

[Guest guest]

Hi !!

I read your post and could have written almost the same thing a

couple months ago. Our son was diagnosed with mild brachy/plagio by

the wonderful people at Cranial Tech. Of course, all the peds. we

took our son to told us not to worry. We decided to pursue banding

on our own and are glad that we did. At almost 7mo. we went to CT

for the first time and got our son's measurements. We were torn on

what to do, so we went home and did some AGGRESSIVE repositioning.

6 weeks later we headed back to CT where we had a casting

scheduled. However, much to our delight, our son's head had

improved just from the repo'ing. No, it's not perfect and if you

look, you can still see a flat spot. We were once again put in the

position of what to do. The pt told us it would not hurt to wait

another 6 weeks and continue to repo. To be honest, I have not

really thought about the shape of my son's head ever since. We had

decided that if we saw improvement through repo'ing then we would

not pursue the band. Our son does not have significant asymmetries,

however, so that may influence your decision more than ours. All I

know is when I look in the mirror, I see some asymmetries in my

facial features and NO ONE has ever pointed them out to me. It

obviously depends on the level of severity regarding your son and

what you will ultimately decide to do. If you post pictures, people

will be able to give you honest feedback. I did that and it

certainly helped. Good luck and whatever you decide to do will be

the right thing!!

(mom to Carson B.)

> Hi, I'm , and our story starts out pretty typically. Our

son

> Trent was born a month early (Dec. 9) and had been breech for a

long

> time. The torticollis " bump " showed up in the first month which

> fortunately led to a diagnosis at his 1 mon. appt. We did a lot

of

> exercises and passive stretches and seemed to knock out the tort

> early on (never referred for pt).

>

> However, Trent experienced mild plagio. Our Dr. thought it'd be a

> good idea to touch bases with Cranial Tech. (we're extremely

> fortunate, their office is less than 5 miles from our house!) At

the

> 1st appt. at about 3.5 months, the therapist wanted us to step up

> exercises and repo. and see us again in two weeks. She saw mild

> plagio and mild facial assymmetry.

>

> We ended up at two more follow-up visits, and she never could say

> that she wholeheartedly recommended a band. It was staying mild.

She

> kind of left it all up to us ... " Do you see it? Do you want to do

> anything about it? A band will help but it's your decision. " This

is

> complicated by the fact that our insurance will emphatically not

pay

> for it ... their stand (and they're sticking by it) is that more

> research is needed on long-term effects. Great ... our babies

need

> help now!

>

> Well, after a lot of soul-searching, my husband and I decided that

we

> were ok with just continuing with the repo. Especially since

Trent

> was getting older and was spending a lot more time sitting and

moving

> himself around.

>

> But then weekend before this one, we were in a department store

with

> bright lights, and caught a look at Trent in a mirror. My hubby

was

> wearing him in a Baby Bjorn and so he was straighter to the mirror

> than usual. The assymmetry struck us anew. You CAN NOT see it when

> he's even slightly turned, but you could see it in that mirror.

>

> It's still not bad ... and I think it's primarily cosmetic in

nature.

> The plagio is mild enough (and he has a lot of hair) that you

don't

> see it looking at his head ... the therapist always had to pull

out

> the sock thing and/or get his head wet. But self-esteem is really

> important too ... I keep worrying that Trent will look in the

mirror

> straight on the rest of his life and even if no one else sees it,

he

> will. I also worry about the flatness in the back and that it's

> where he'll go bald someday if he follows my family's pattern.

>

> I sometimes just with the therapist had been more emphatic one way

or

> the other. " What do you think? " is hard to work with though she

was

> as nice as she could be (Trent loved her).

>

> My husband has a lot of assymmetry (who knows why?), and I've

always

> thought he was cute of course. He never even noticed it until a

Dr.

> mentioned it in the course of a routine physical as an adult,

though

> it's pretty obvious from my perspective.

>

> Anyway, for other people with mild diagnoses, how did you make

your

> decision?

>

> Also, Trent is able to and compelled to roll on his tummy to sleep

> now. I'm tentatively letting him despite some nervousness about

> it ... did tummy sleeping at a later date help anyone?

>

> Thanks for your help. I was a lurker at the torticollis group for

a

> long time, I just recently joined this one but I can see that

people

> are just as nice and supportive.

>

>

[Guest guest]

Hi ,

I too have almost the same situation. We started repositioning our

daughter at 4mos, and I was feeling confident that her case did not

require a band. So we waited to visit CT until 1 1/2 of repo and we

were told her cranial vault was severe...we were amazed. Her head

seem to be really improving. We decided to give it one more month and

check back, and according to CT her measurements had worsened. The

back of her head does not seem nearly as severe as what I have seen,

but everytime I put her in the mirror, I get that same feeling. I see

her cheek is bigger and her ear has really shifted, I am getting so

upset when I look at the whole picture at times. They say the 2

dimensional plane is the best way to check progress or lack of. The

lady at CT did mention she was surpised by her high asymettry

measurements as her head is not extremely mishappened. They told me

go with your gut. I posted messages all over the place and thought

long and hard. And we decided to get her banded. She just received

the docband on Tues, and she adjusted amazingly well. Now I just

wished I did it earlier, and hope that we will see some good

correction since she started at 8mos. My only advice to you , since I

am new to this journey as well, is to go with your gut. I will point

out that if you are leaning towards the band, you may want to just

get that in the works. Once I made up my mind I was so eager to get

her started, and then I had to wait for my doctor to write a letter

and then have ins co preapprove(which they denied btw) and then wait

to get an appt with CT. I ended up waiting another month because of

delays with dr and ins. I got great advice from this group as well as

the tort group and the cranial tech dicussion board. If you are

unsure of have specific ques, keep asking.....everyone is so willing

to share their experience. Hopefully we all will have made the right

the decision in the long run.

good luck,

Nj

> Hi, I'm , and our story starts out pretty typically. Our

son

> Trent was born a month early (Dec. 9) and had been breech for a

long

> time. The torticollis " bump " showed up in the first month which

> fortunately led to a diagnosis at his 1 mon. appt. We did a lot of

> exercises and passive stretches and seemed to knock out the tort

> early on (never referred for pt).

>

> However, Trent experienced mild plagio. Our Dr. thought it'd be a

> good idea to touch bases with Cranial Tech. (we're extremely

> fortunate, their office is less than 5 miles from our house!) At

the

> 1st appt. at about 3.5 months, the therapist wanted us to step up

> exercises and repo. and see us again in two weeks. She saw mild

> plagio and mild facial assymmetry.

>

> We ended up at two more follow-up visits, and she never could say

> that she wholeheartedly recommended a band. It was staying mild.

She

> kind of left it all up to us ... " Do you see it? Do you want to do

> anything about it? A band will help but it's your decision. " This

is

> complicated by the fact that our insurance will emphatically not

pay

> for it ... their stand (and they're sticking by it) is that more

> research is needed on long-term effects. Great ... our babies need

> help now!

>

> Well, after a lot of soul-searching, my husband and I decided that

we

> were ok with just continuing with the repo. Especially since Trent

> was getting older and was spending a lot more time sitting and

moving

> himself around.

>

> But then weekend before this one, we were in a department store

with

> bright lights, and caught a look at Trent in a mirror. My hubby was

> wearing him in a Baby Bjorn and so he was straighter to the mirror

> than usual. The assymmetry struck us anew. You CAN NOT see it when

> he's even slightly turned, but you could see it in that mirror.

>

> It's still not bad ... and I think it's primarily cosmetic in

nature.

> The plagio is mild enough (and he has a lot of hair) that you don't

> see it looking at his head ... the therapist always had to pull out

> the sock thing and/or get his head wet. But self-esteem is really

> important too ... I keep worrying that Trent will look in the

mirror

> straight on the rest of his life and even if no one else sees it,

he

> will. I also worry about the flatness in the back and that it's

> where he'll go bald someday if he follows my family's pattern.

>

> I sometimes just with the therapist had been more emphatic one way

or

> the other. " What do you think? " is hard to work with though she was

> as nice as she could be (Trent loved her).

>

> My husband has a lot of assymmetry (who knows why?), and I've

always

> thought he was cute of course. He never even noticed it until a Dr.

> mentioned it in the course of a routine physical as an adult,

though

> it's pretty obvious from my perspective.

>

> Anyway, for other people with mild diagnoses, how did you make your

> decision?

>

> Also, Trent is able to and compelled to roll on his tummy to sleep

> now. I'm tentatively letting him despite some nervousness about

> it ... did tummy sleeping at a later date help anyone?

>

> Thanks for your help. I was a lurker at the torticollis group for

a

> long time, I just recently joined this one but I can see that

people

> are just as nice and supportive.

>

>

[Guest guest]

Hi ,

Welcome to the group. Thats great you were able to get Trent

diagnosed and the tort corrected so quickly. As far as mild plagio

goes, it is a difficult decision. When was your last CT appt? Was

it long enough ago that it might make a difference to go again for

another comparison. My adivice to you is that you need to by 100%

happy with how his head/face are right now, as nobody can tell you

for sure if it will correct anymore on its own. I think if you

noticed this over a week ago, and took the time to find our group

and post your story, it's probably bothering you . To me, banding

(esp. if you live so close!) is an easy way to know you did all you

could to help the situation and know you won't have any regrets.

You also have to take into account travel and finances though, as

well as being able to get a prescription. You really have to go

with your gut with this decision. Good luck to you guys and please

let us know what you decide.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi, I'm , and our story starts out pretty typically. Our

son

> Trent was born a month early (Dec. 9) and had been breech for a

long

> time. The torticollis " bump " showed up in the first month which

> fortunately led to a diagnosis at his 1 mon. appt. We did a lot

of

> exercises and passive stretches and seemed to knock out the tort

> early on (never referred for pt).

>

> However, Trent experienced mild plagio. Our Dr. thought it'd be a

> good idea to touch bases with Cranial Tech. (we're extremely

> fortunate, their office is less than 5 miles from our house!) At

the

> 1st appt. at about 3.5 months, the therapist wanted us to step up

> exercises and repo. and see us again in two weeks. She saw mild

> plagio and mild facial assymmetry.

>

> We ended up at two more follow-up visits, and she never could say

> that she wholeheartedly recommended a band. It was staying mild.

She

> kind of left it all up to us ... " Do you see it? Do you want to do

> anything about it? A band will help but it's your decision. " This

is

> complicated by the fact that our insurance will emphatically not

pay

> for it ... their stand (and they're sticking by it) is that more

> research is needed on long-term effects. Great ... our babies

need

> help now!

>

> Well, after a lot of soul-searching, my husband and I decided that

we

> were ok with just continuing with the repo. Especially since

Trent

> was getting older and was spending a lot more time sitting and

moving

> himself around.

>

> But then weekend before this one, we were in a department store

with

> bright lights, and caught a look at Trent in a mirror. My hubby

was

> wearing him in a Baby Bjorn and so he was straighter to the mirror

> than usual. The assymmetry struck us anew. You CAN NOT see it when

> he's even slightly turned, but you could see it in that mirror.

>

> It's still not bad ... and I think it's primarily cosmetic in

nature.

> The plagio is mild enough (and he has a lot of hair) that you

don't

> see it looking at his head ... the therapist always had to pull

out

> the sock thing and/or get his head wet. But self-esteem is really

> important too ... I keep worrying that Trent will look in the

mirror

> straight on the rest of his life and even if no one else sees it,

he

> will. I also worry about the flatness in the back and that it's

> where he'll go bald someday if he follows my family's pattern.

>

> I sometimes just with the therapist had been more emphatic one way

or

> the other. " What do you think? " is hard to work with though she

was

> as nice as she could be (Trent loved her).

>

> My husband has a lot of assymmetry (who knows why?), and I've

always

> thought he was cute of course. He never even noticed it until a

Dr.

> mentioned it in the course of a routine physical as an adult,

though

> it's pretty obvious from my perspective.

>

> Anyway, for other people with mild diagnoses, how did you make

your

> decision?

>

> Also, Trent is able to and compelled to roll on his tummy to sleep

> now. I'm tentatively letting him despite some nervousness about

> it ... did tummy sleeping at a later date help anyone?

>

> Thanks for your help. I was a lurker at the torticollis group for

a

> long time, I just recently joined this one but I can see that

people

> are just as nice and supportive.

>

>