Re: Now what do I do? Band or not? (long)

[Guest guest]

our neurosurgeon told us he wouldnt band either and my sons assymetry was similiar (15, 15, and 17 mm). sorry I cants ay about results with other bands but CT has results older than your son on their site, I would band

On Jan 22, 2008 3:20 PM, nwilkens2275 <nwilkens2275@...> wrote:

Sorry for the repeat post for those of you on both plagio message boards...We just saw a craniofacial surgeon today for my son Jake, 16.5 months. After asking questions and examining him, the surgeon said he would not band him, that there has been improvement (from his 4m CT scan) and it will continue to improve over time. But then he asked me what I wanted to do, and I said that I would band him because at least I could say I tried (totally in tears too, of course. So embarassing). So he went ahead and wrote the prescription and said he would defer to the orthotic department on whether they think it will be worth it or not. He was really nice, and I felt like he took his time and really talked to us about it (A vast improvement from my experience with a neurosurgeon a year ago).So we went to the " brace shop " in the same hospital and spoke to two orhtotists. They measured his assymetry to be 11/16 of an inch, which they described as moderate (not sure what that comes out to in millimeters). They both said they were willing to treat him but with the realistic approach that we may not see a huge improvement due to

his age, if any at all. They use the StarBand. We have another consultation at Cranial Tech in Charlotte on Thursday. My husband doesn't think we should band, but he said it was up to me, because he knows this has been bothering me so much, way more than him. And of course, the surgeon today just validated his opinion (now my husband can say TWO highly qualified pediatric surgeons have said he doesn't need banded). So now the weight of this decision is solely on me. What should I do? Should we even go ahead with the banding? I worry whether it will be worth it at this late stage, and I worry that either the band/process itself and/or the debt we incur over it, could put a wedge between my husband and I. He's not adamently opposed to it, but it's obvious he doesn't think we should do it. My mom thinks I should 100% go through with it. Should I make a decision based on cost (one's in-network and one isn't) and proximity (35 minutes or 3 hours each way), if I'm not going to see huge results anyway? Or shoudl I just forget the whole thing? Does anyone else have an opinion? I'm open to them all! Thanks! (mom to Jordan-4 today!, and Jake 16.5m) -- ASK ME ABOUT GIRL SCOUT COOKIES!

SC SAHM to , , and "Cleaning your house while your kids are still growing is like shoveling the sidewalk before it stops snowing" Phyllis Diller

www.joeysmanicmelon.blogspot.comwww.midscbwers.blogspot.com

[Guest guest]

Even with your son's age, I would band because at least you know you

did everything you could if the results are minimal. Cranial Tech

has a great reputation for banding older children so if you can, I'd

go with them. Here is a picture of a boy on their site that started

treatment at 19.5 months...wow, such improvement!

http://www.cranialtech.com/treatment/casef.html

Good luck.

PS: I know this is different but my husband was fine with us

banding because he knew how bothered I was with my son's headshape

(we banded at 7.5 months). Now, at 19 months tomorrow, my husband

is glad that we banded him back then so hopefully, if you band

you'll see results and your husband will be so glad you went through

with it.

>

> > Sorry for the repeat post for those of you on both plagio

message

> > boards...

> >

> > We just saw a craniofacial surgeon today for my son Jake, 16.5

> > months. After asking questions and examining him, the surgeon

said

> > he would not band him, that there has been improvement (from his

4m

> > CT scan) and it will continue to improve over time. But then he

> > asked me what I wanted to do, and I said that I would band him

> > because at least I could say I tried (totally in tears too, of

> > course. So embarassing). So he went ahead and wrote the

prescription

> > and said he would defer to the orthotic department on whether

they

> > think it will be worth it or not. He was really nice, and I felt

> > like he took his time and really talked to us about it (A vast

> > improvement from my experience with a neurosurgeon a year ago).

> >

> > So we went to the " brace shop " in the same hospital and spoke to

two

> > orhtotists. They measured his assymetry to be 11/16 of an inch,

> > which they described as moderate (not sure what that comes out

to in

> > millimeters). They both said they were willing to treat him but

with

> > the realistic approach that we may not see a huge improvement

due to

> > his age, if any at all. They use the StarBand. We have another

> > consultation at Cranial Tech in Charlotte on Thursday. My husband

> > doesn't think we should band, but he said it was up to me,

because

> > he knows this has been bothering me so much, way more than him.

And

> > of course, the surgeon today just validated his opinion (now my

> > husband can say TWO highly qualified pediatric surgeons have

said he

> > doesn't need banded).

> >

> > So now the weight of this decision is solely on me. What should I

> > do? Should we even go ahead with the banding? I worry whether it

> > will be worth it at this late stage, and I worry that either the

> > band/process itself and/or the debt we incur over it, could put a

> > wedge between my husband and I. He's not adamently opposed to it,

> > but it's obvious he doesn't think we should do it. My mom thinks

I

> > should 100% go through with it. Should I make a decision based on

> > cost (one's in-network and one isn't) and proximity (35 minutes

or 3

> > hours each way), if I'm not going to see huge results anyway? Or

> > shoudl I just forget the whole thing? Does anyone else have an

> > opinion? I'm open to them all! Thanks!

> >

> >

> > (mom to Jordan-4 today!, and Jake 16.5m)

> >

> >

> >

>

>

>

> --

> ASK ME ABOUT GIRL SCOUT COOKIES!

>

> SC SAHM to , , and

>

> " Cleaning your house while your kids are still growing is like

shoveling the

> sidewalk before it stops snowing " Phyllis Diller

>

> www.joeysmanicmelon.blogspot.com

> www.midscbwers.blogspot.com

>

[Guest guest]

I just posted a long post under "Now I don't know what to do"

I am cross posting it here because it is late and I am sleepy - but Ifeel the same for you and wanted to respond.

:-D

I'm gonna give you MY opinion - so take it for what ever it is worth. I have been on this board for almost 2 years and have been moderating most of that. I had to FIGHT to get my daughter banded - she was mild/mod but had facial asym - she ended up in 2 bands to try and help the facial asym.

My thought for fighting for her was I wanted to get her the help she needed while I could - so that we wouldn't get to the other side of the treatment window only to be told it was too late to treat and we should have treated when we could have. ALL the dr's told me that she was fine, she would round out, no one is asymmetrical, yada, yada. WEll, here we are - my mild/mod baby who wore 2 bands and she STILL has plagio. I am SOOOO thankful that we did do what we could when we could so that I'm not kicking myself. IF you are given the chance to treat, I say go for it. These little ones are placed in our arms for us to take care of. If your heart deep down says to band then do it. I know for me my husband HATED that I was always talking about her head and wanting to poush for treatment when the dr said it would be fine - I took pictures of her head with her hair wet and showed him what I saw. When he saw it - he was on board too.

Also, please realize that the medical community isn't always band-friendly - and not up to speed with the treatment. They say no alot more then they say yes - even when they should be saying yes.

HTH!!!!

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Now what do I do? Band or not? (long)

Sorry for the repeat post for those of you on both plagio message

boards...

We just saw a craniofacial surgeon today for my son Jake, 16.5

months. After asking questions and examining him, the surgeon said

he would not band him, that there has been improvement (from his 4m

CT scan) and it will continue to improve over time. But then he

asked me what I wanted to do, and I said that I would band him

because at least I could say I tried (totally in tears too, of

course. So embarassing). So he went ahead and wrote the prescription

and said he would defer to the orthotic department on whether they

think it will be worth it or not. He was really nice, and I felt

like he took his time and really talked to us about it (A vast

improvement from my experience with a neurosurgeon a year ago).

So we went to the "brace shop" in the same hospital and spoke to two

orhtotists. They measured his assymetry to be 11/16 of an inch,

which they described as moderate (not sure what that comes out to in

millimeters). They both said they were willing to treat him but with

the realistic approach that we may not see a huge improvement due to

his age, if any at all. They use the StarBand. We have another

consultation at Cranial Tech in Charlotte on Thursday. My husband

doesn't think we should band, but he said it was up to me, because

he knows this has been bothering me so much, way more than him. And

of course, the surgeon today just validated his opinion (now my

husband can say TWO highly qualified pediatric surgeons have said he

doesn't need banded).

So now the weight of this decision is solely on me. What should I

do? Should we even go ahead with the banding? I worry whether it

will be worth it at this late stage, and I worry that either the

band/process itself and/or the debt we incur over it, could put a

wedge between my husband and I. He's not adamently opposed to it,

but it's obvious he doesn't think we should do it. My mom thinks I

should 100% go through with it. Should I make a decision based on

cost (one's in-network and one isn't) and proximity (35 minutes or 3

hours each way), if I'm not going to see huge results anyway? Or

shoudl I just forget the whole thing? Does anyone else have an

opinion? I'm open to them all! Thanks!

(mom to Jordan-4 today!, and Jake 16.5m)

More new features than ever. Check out the new AOL Mail!

[Guest guest]

Hi ,

For what it's worth, we banded at 18.5 months (Cranial Technologies)

and have been thrilled with the progress our son has made in 2

months (2 more to go!). We also a) had it 100% covered by insurance

and only drive 10 minutes to get to his appoinments. But at the

time he started, we did not know if it would be covered or not.

Having had 2 surgeries on my jaws because of alignment problems, I

did not want to take any risks with my son. I'm very happy we

decided to band.

Amy

>

>

> Now what do I do? Band or not? (long)

>

>

>

>

>

>

> Sorry for the repeat post for those of you on both plagio message

> boards...

>

> We just saw a craniofacial surgeon today for my son Jake, 16.5

> months. After asking questions and examining him, the surgeon said

> he would not band him, that there has been improvement (from his

4m

> CT scan) and it will continue to improve over time. But then he

> asked me what I wanted to do, and I said that I would band him

> because at least I could say I tried (totally in tears too, of

> course. So embarassing). So he went ahead and wrote the

prescription

> and said he would defer to the orthotic department on whether they

> think it will be worth it or not. He was really nice, and I felt

> like he took his time and really talked to us about it (A vast

> improvement from my experience with a neurosurgeon a year ago).

>

> So we went to the " brace shop " in the same hospital and spoke to

two

> orhtotists. They measured his assymetry to be 11/16 of an inch,

> which they described as moderate (not sure what that comes out to

in

> millimeters). They both said they were willing to treat him but

with

> the realistic approach that we may not see a huge improvement due

to

> his age, if any at all. They use the StarBand. We have another

> consultation at Cranial Tech in Charlotte on Thursday. My husband

> doesn't think we should band, but he said it was up to me, because

> he knows this has been bothering me so much, way more than him.

And

> of course, the surgeon today just validated his opinion (now my

> husband can say TWO highly qualified pediatric surgeons have said

he

> doesn't need banded).

>

> So now the weight of this decision is solely on me. What should I

> do? Should we even go ahead with the banding? I worry whether it

> will be worth it at this late stage, and I worry that either the

> band/process itself and/or the debt we incur over it, could put a

> wedge between my husband and I. He's not adamently opposed to it,

> but it's obvious he doesn't think we should do it. My mom thinks I

> should 100% go through with it. Should I make a decision based on

> cost (one's in-network and one isn't) and proximity (35 minutes or

3

> hours each way), if I'm not going to see huge results anyway? Or

> shoudl I just forget the whole thing? Does anyone else have an

> opinion? I'm open to them all! Thanks!

>

>

> (mom to Jordan-4 today!, and Jake 16.5m)

>

>

>

>

>

>

_____________________________________________________________________

___

> More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

>

[Guest guest]

Hi Amy-

Thank you! It makes me feel better to hear first hand from someone

who got treatment late as well. Which CT did you go to? What

assymetry measurement did your son start at? Our appointment

tomorrow at CT will hopefully give me a better idea of where he

falls and if he may compare to your son. Thanks again for responding!

>

> Hi ,

> For what it's worth, we banded at 18.5 months (Cranial

Technologies)

> and have been thrilled with the progress our son has made in 2

> months (2 more to go!). We also a) had it 100% covered by

insurance

> and only drive 10 minutes to get to his appoinments. But at the

> time he started, we did not know if it would be covered or not.

> Having had 2 surgeries on my jaws because of alignment problems, I

> did not want to take any risks with my son. I'm very happy we

> decided to band.

> Amy

> >

> >

> > Now what do I do? Band or not? (long)

> >

> >

> >

> >

> >

> >

> > Sorry for the repeat post for those of you on both plagio

message

> > boards...

> >

> > We just saw a craniofacial surgeon today for my son Jake, 16.5

> > months. After asking questions and examining him, the surgeon

said

> > he would not band him, that there has been improvement (from his

> 4m

> > CT scan) and it will continue to improve over time. But then he

> > asked me what I wanted to do, and I said that I would band him

> > because at least I could say I tried (totally in tears too, of

> > course. So embarassing). So he went ahead and wrote the

> prescription

> > and said he would defer to the orthotic department on whether

they

> > think it will be worth it or not. He was really nice, and I felt

> > like he took his time and really talked to us about it (A vast

> > improvement from my experience with a neurosurgeon a year ago).

> >

> > So we went to the " brace shop " in the same hospital and spoke to

> two

> > orhtotists. They measured his assymetry to be 11/16 of an inch,

> > which they described as moderate (not sure what that comes out

to

> in

> > millimeters). They both said they were willing to treat him but

> with

> > the realistic approach that we may not see a huge improvement

due

> to

> > his age, if any at all. They use the StarBand. We have another

> > consultation at Cranial Tech in Charlotte on Thursday. My

husband

> > doesn't think we should band, but he said it was up to me,

because

> > he knows this has been bothering me so much, way more than him.

> And

> > of course, the surgeon today just validated his opinion (now my

> > husband can say TWO highly qualified pediatric surgeons have

said

> he

> > doesn't need banded).

> >

> > So now the weight of this decision is solely on me. What should

I

> > do? Should we even go ahead with the banding? I worry whether it

> > will be worth it at this late stage, and I worry that either the

> > band/process itself and/or the debt we incur over it, could put

a

> > wedge between my husband and I. He's not adamently opposed to

it,

> > but it's obvious he doesn't think we should do it. My mom thinks

I

> > should 100% go through with it. Should I make a decision based

on

> > cost (one's in-network and one isn't) and proximity (35 minutes

or

> 3

> > hours each way), if I'm not going to see huge results anyway? Or

> > shoudl I just forget the whole thing? Does anyone else have an

> > opinion? I'm open to them all! Thanks!

> >

> >

> > (mom to Jordan-4 today!, and Jake 16.5m)

> >

> >

> >

> >

> >

> >

>

_____________________________________________________________________

> ___

> > More new features than ever. Check out the new AOL Mail ! -

> http://webmail.aol.com

> >

>

[Guest guest]

,

I dont know if this helps or not but my son HATED his head being toouch, and hats and everything too. I was worried of how he was going to act and that I would be living in a nightmare for the entire time he had it on. Well he has so far proved me wrong. He got his helmet on the 22 on he has been doing great. He is a little more cuddly but I dont mind that one bit.

HTH

Bradley 8 3/4 months -STARband 1-22-08

Re: Now what do I do? Band or not? (long)

Hi ,

I feel for you... I dont know what to do either! Our son is 7.5 months old, and EVERYONE except Cranial Tech is saying he is mild/moderate and doesnt need the band. The Physicians Assistant at Childrens, the Chiro, The Osteo, his pediatrician (although he still wrote the prescription based on CT's request even without me talking to him!), my hubby, my mother... you name it. If I band him, its totally my decision and I keep thinking, what if he HATES it (he doesnt even like his head touched or hats on, and has been a VERY fussy baby), what if it DOESNT work, what are all these people going to say to me when I tell them I want to do it for sure..

But I started thinking... what am I going to feel like a month from now, or two or a year from now, am I still going to want to band or when its too late wish I had? Am I worried about what people are going to think of "my decision" or am I worried about my son and the future of his head/face (he has asymmetry)? Whats the worst thing? I band him and it doesnt help and I put him through 4 months of wearing a silly helmet and being annoyed. Whats the best thing? His head gets at least a little better... or ALOT! I know your child is older at this point, but I have seen pictures of older babies who have been helped by the band/helmet. .. and some with great improvement! I am starting to agree with the other person who posted to us. Go with your heart. You know yourself... I know myself and I will prob beat myself up forever if I dont and he doesnt get better on his own. But I am still on the fence, so we shall see. But I wanted to let you know that you are not alone!

Oh, and I LOVED Cranial Tech. They did not push, were very nice, took all the time in the world with , and really seemed to know what they were talking about. I think I would trust them. They have banded ALOT of little ones, and everything I read about them is positive.

Good Luck!!

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