Re: post-treatment regression

[Guest guest]

Hi, I have the same question as u do. I wonder my son just graduated today of

his helmet after wearing it for 8 weeks. Should i be worried about positioning

his head while he is sleeping? Should i start putting him to sleep in his

stomach? He is 7 months old.

Thanks

Miriam

>

> For those who have graduated from the band...has anyone seen regression

following treatment?

>

> Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with

the results and opted not to do a second band. (He started at 17 mm CV asymmetry

and graduated at 9mm.) Over the course of time since he graduated, I've been

thinking his head looks different...not quite as good as on 8/5/09. But I

decided maybe I was overanalyzing things since we didn't opt for a second band

and his CV number was still quite high at the end of treatment. Anyway, after

several weeks of second-guessing myself, we went back to CT to measure again and

his numbers were the same (hand measurements...actually CV was measured at 10mm

this day.) We decided to move ahead with a second band. When I consider where

we started, his head does look great -- but I realized that if I take where we

started out of the equation and look at his head now, there is still much room

for improvement. This morning, I just glanced at his post-treatment pictures

that I took the day he graduated and his head IS different now after 7 weeks out

of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still

sleeps exclusively on his back (at 8 1/2 months). We've tried everything to

encourage him to find another position, but he won't do it. That's about the

only time he's on the back of his head, other than brief car trips in the car

seat.

>

> Has anyone experienced this? I know the chance of regression is almost

zero...but we seem to have defied the odds. The hand measurements don't reflect

the change we've seen, which I don't fully understand. (I had my husband look at

the pictures, too, just to make sure I wasn't seeing things and we both agreed

it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks

ago, given what it looks like now.

>

> We are getting band #2 next week, so I guess I shouldn't worry about this.

But I am curious if anyone else has seen this happen? And if so, how old was

your child and were they a back-sleeper? Seems like most have the opposite

experience and the new growth post-treatment actually continues to improve

things.

>

> I'll try to post pictures shortly.

>

> Jill

> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)

> Texas

>

[Guest guest]

I have heard of regression. One of the moderators in this group had a child in a

3rd band for regression. She's not very active here these days, but I think you

can find her story by googling " hannah's noggin " . I have heard that something

like 3% of kids have regression, but to be honest I have no idea if this number

is accurate. My ortho told us it is hard to know which kids will regress and

why. I would recommend going back to your clinician for a follow up to see what

has changed and if another band is recommended.

-christine

sydney, 3.5 yrs, starband grad

>

> For those who have graduated from the band...has anyone seen regression

following treatment?

>

> Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with

the results and opted not to do a second band. (He started at 17 mm CV asymmetry

and graduated at 9mm.) Over the course of time since he graduated, I've been

thinking his head looks different...not quite as good as on 8/5/09. But I

decided maybe I was overanalyzing things since we didn't opt for a second band

and his CV number was still quite high at the end of treatment. Anyway, after

several weeks of second-guessing myself, we went back to CT to measure again and

his numbers were the same (hand measurements...actually CV was measured at 10mm

this day.) We decided to move ahead with a second band. When I consider where

we started, his head does look great -- but I realized that if I take where we

started out of the equation and look at his head now, there is still much room

for improvement. This morning, I just glanced at his post-treatment pictures

that I took the day he graduated and his head IS different now after 7 weeks out

of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still

sleeps exclusively on his back (at 8 1/2 months). We've tried everything to

encourage him to find another position, but he won't do it. That's about the

only time he's on the back of his head, other than brief car trips in the car

seat.

>

> Has anyone experienced this? I know the chance of regression is almost

zero...but we seem to have defied the odds. The hand measurements don't reflect

the change we've seen, which I don't fully understand. (I had my husband look at

the pictures, too, just to make sure I wasn't seeing things and we both agreed

it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks

ago, given what it looks like now.

>

> We are getting band #2 next week, so I guess I shouldn't worry about this.

But I am curious if anyone else has seen this happen? And if so, how old was

your child and were they a back-sleeper? Seems like most have the opposite

experience and the new growth post-treatment actually continues to improve

things.

>

> I'll try to post pictures shortly.

>

> Jill

> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)

> Texas

>

[Guest guest]

Jill,

I think it's great that you caught this so soon and are banding

a second time. Now you have a chance to get him down to almost no

asymmetry at all.

My son finished his Starband six months ago and my experience has

been that he looked better to my eyes right when he graduated than

he does now. However, I am almost sure there has been no measurable

regression, since there is no asymmetry and he never ever sleeps

on his back.

What I'm thinking is that when you first get the helmet off the head

looks great because you are comparing it to what it was pre-banding.

Then, after time, you start noticing the remaining imperfections.

What I'm saying is that it's likely that a parent's assessment gets

more critical after the band's been off for a while. I know mine has,

and crazy as it seems I am even considering another band. I say

crazy, because we have no asymmetry and the CI is 86%, which isn't

too bad.

Anyway, good for you for getting on this so quick, and good luck!

>

> For those who have graduated from the band...has anyone seen regression

following treatment?

>

> Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with

the results and opted not to do a second band. (He started at 17 mm CV asymmetry

and graduated at 9mm.) Over the course of time since he graduated, I've been

thinking his head looks different...not quite as good as on 8/5/09. But I

decided maybe I was overanalyzing things since we didn't opt for a second band

and his CV number was still quite high at the end of treatment. Anyway, after

several weeks of second-guessing myself, we went back to CT to measure again and

his numbers were the same (hand measurements...actually CV was measured at 10mm

this day.) We decided to move ahead with a second band. When I consider where

we started, his head does look great -- but I realized that if I take where we

started out of the equation and look at his head now, there is still much room

for improvement. This morning, I just glanced at his post-treatment pictures

that I took the day he graduated and his head IS different now after 7 weeks out

of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still

sleeps exclusively on his back (at 8 1/2 months). We've tried everything to

encourage him to find another position, but he won't do it. That's about the

only time he's on the back of his head, other than brief car trips in the car

seat.

>

> Has anyone experienced this? I know the chance of regression is almost

zero...but we seem to have defied the odds. The hand measurements don't reflect

the change we've seen, which I don't fully understand. (I had my husband look at

the pictures, too, just to make sure I wasn't seeing things and we both agreed

it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks

ago, given what it looks like now.

>

> We are getting band #2 next week, so I guess I shouldn't worry about this.

But I am curious if anyone else has seen this happen? And if so, how old was

your child and were they a back-sleeper? Seems like most have the opposite

experience and the new growth post-treatment actually continues to improve

things.

>

> I'll try to post pictures shortly.

>

> Jill

> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)

> Texas

>

[Guest guest]

I am really curious to see what people have to say in response to what you

wrote. My daughter has brachy and has been in her band 1 week. I have already

can see great results and feel confident in the treatment process, but am

already worried about regression once she graduates from the band, especially

since she is younger like your son. She almost 5 months and they said 6-10

weeks. Some babies don't even get their band till that age or later. I feel

her head will still be soft when she graduates and feel it could go flat again.

She is a back sleeper too, and I don't see that changing, but maybe we can be

successful with encouraging her to lay in different positions. Very interested

in what people follow up with.

Lola's mom, 5 months (DOC Band since 9/21)

Dallas CT

>

> For those who have graduated from the band...has anyone seen regression

following treatment?

>

> Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with

the results and opted not to do a second band. (He started at 17 mm CV asymmetry

and graduated at 9mm.) Over the course of time since he graduated, I've been

thinking his head looks different...not quite as good as on 8/5/09. But I

decided maybe I was overanalyzing things since we didn't opt for a second band

and his CV number was still quite high at the end of treatment. Anyway, after

several weeks of second-guessing myself, we went back to CT to measure again and

his numbers were the same (hand measurements...actually CV was measured at 10mm

this day.) We decided to move ahead with a second band. When I consider where

we started, his head does look great -- but I realized that if I take where we

started out of the equation and look at his head now, there is still much room

for improvement. This morning, I just glanced at his post-treatment pictures

that I took the day he graduated and his head IS different now after 7 weeks out

of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still

sleeps exclusively on his back (at 8 1/2 months). We've tried everything to

encourage him to find another position, but he won't do it. That's about the

only time he's on the back of his head, other than brief car trips in the car

seat.

>

> Has anyone experienced this? I know the chance of regression is almost

zero...but we seem to have defied the odds. The hand measurements don't reflect

the change we've seen, which I don't fully understand. (I had my husband look at

the pictures, too, just to make sure I wasn't seeing things and we both agreed

it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks

ago, given what it looks like now.

>

> We are getting band #2 next week, so I guess I shouldn't worry about this.

But I am curious if anyone else has seen this happen? And if so, how old was

your child and were they a back-sleeper? Seems like most have the opposite

experience and the new growth post-treatment actually continues to improve

things.

>

> I'll try to post pictures shortly.

>

> Jill

> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)

> Texas

>

[Guest guest]

If you see regression in the pictures, even if the measurements' don't show it, then I would assume that it's there. CT only does hand measuremenst and they have room for more error. I'm glad you're going for the 2nd helmet. This should help. By the time your little one graduates from this one, regression will be less likely because of the age. Good luck.

Re: post-treatment regression

I have heard of regression. One of the moderators in this group had a child in a 3rd band for regression. She's not very active here these days, but I think you can find her story by googling "hannah's noggin". I have heard that something like 3% of kids have regression, but to be honest I have no idea if this number is accurate. My ortho told us it is hard to know which kids will regress and why. I would recommend going back to your clinician for a follow up to see what has changed and if another band is recommended.-christinesydney, 3.5 yrs, starband grad>> For those who have graduated from the band...has anyone seen regression following treatment? > > Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with the results and opted not to do a second band. (He started at 17 mm CV asymmetry and graduated at 9mm.) Over the course of time since he graduated, I've been thinking his head looks different...not quite as good as on 8/5/09. But I decided maybe I was overanalyzing things since we didn't opt for a second band and his CV number was still quite high at the end of treatment. Anyway, after several weeks of second-guessing myself, we went back to CT to measure again and his numbers were the same (hand measurements...actually CV was measured at 10mm this day.) We decided to move ahead with a second band. When I consider where we started, his head does look great -- but I realized that if I take where we started out of the equation and look at his head now, there is still much room for improvement. This morning, I just glanced at his post-treatment pictures that I took the day he graduated and his head IS different now after 7 weeks out of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still sleeps exclusively on his back (at 8 1/2 months). We've tried everything to encourage him to find another position, but he won't do it. That's about the only time he's on the back of his head, other than brief car trips in the car seat. > > Has anyone experienced this? I know the chance of regression is almost zero...but we seem to have defied the odds. The hand measurements don't reflect the change we've seen, which I don't fully understand. (I had my husband look at the pictures, too, just to make sure I wasn't seeing things and we both agreed it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks ago, given what it looks like now. > > We are getting band #2 next week, so I guess I shouldn't worry about this. But I am curious if anyone else has seen this happen? And if so, how old was your child and were they a back-sleeper? Seems like most have the opposite experience and the new growth post-treatment actually continues to improve things. > > I'll try to post pictures shortly. > > Jill> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)> Texas>

[Guest guest]

Hi Jill, In August, I experienced almost the same situation as you. Luke

graduated after being in a STARband for 2 months (5-7 months old, 4-6/09). My

husband was the one who thought that his head did not look the same as it did

when he graduated. I saw room for improvement, but it wasn't severe enough to

me anymore.

We took him in to CT for a DOCband evaluation and I'm not definitely sure if he

regressed because CT takes hand measurements and STARband used the Star Scanner.

But his measurements at CT for his brachy were 3% higher, so I'm guessing he

regressed even though he doesn't sleep on his back anymore and I even put in a

memory foam mattress pad and used the noggin nest.

Regardless of whether it was regression or not or just differing outcomes

because of different measurement techniques, my husband and I decided to go

through with getting a DOCband for Luke at 9.5 months.

I was still doing weekly photographs and I didn't see regression, however, my

husband just wasn't satisfied with the top view of Luke's head.

Hope this helps.

Luke, 10.3 months, moderate brachy

DOCband since 9/2/09

NYC

>

> For those who have graduated from the band...has anyone seen regression

following treatment?

>

> Our son graduated on 8/5/09 after 7 weeks of treatment. We were pleased with

the results and opted not to do a second band. (He started at 17 mm CV asymmetry

and graduated at 9mm.) Over the course of time since he graduated, I've been

thinking his head looks different...not quite as good as on 8/5/09. But I

decided maybe I was overanalyzing things since we didn't opt for a second band

and his CV number was still quite high at the end of treatment. Anyway, after

several weeks of second-guessing myself, we went back to CT to measure again and

his numbers were the same (hand measurements...actually CV was measured at 10mm

this day.) We decided to move ahead with a second band. When I consider where

we started, his head does look great -- but I realized that if I take where we

started out of the equation and look at his head now, there is still much room

for improvement. This morning, I just glanced at his post-treatment pictures

that I took the day he graduated and his head IS different now after 7 weeks out

of the helmet. Not nearly as round in the back as it was 7 weeks ago. He still

sleeps exclusively on his back (at 8 1/2 months). We've tried everything to

encourage him to find another position, but he won't do it. That's about the

only time he's on the back of his head, other than brief car trips in the car

seat.

>

> Has anyone experienced this? I know the chance of regression is almost

zero...but we seem to have defied the odds. The hand measurements don't reflect

the change we've seen, which I don't fully understand. (I had my husband look at

the pictures, too, just to make sure I wasn't seeing things and we both agreed

it doesn't look like it did.) I almost couldn't believe how round it was 7 weeks

ago, given what it looks like now.

>

> We are getting band #2 next week, so I guess I shouldn't worry about this.

But I am curious if anyone else has seen this happen? And if so, how old was

your child and were they a back-sleeper? Seems like most have the opposite

experience and the new growth post-treatment actually continues to improve

things.

>

> I'll try to post pictures shortly.

>

> Jill

> Cade's mom, 8 1/2 months (DOC Band 6/18 - 8/5/09)

> Texas

>