Re: newbie - our story & a few questions

[Guest guest]

Hi,

glad to hear you're starting on a band. Your neuro is an idiot to say " you don't

hear about plagio in kindergarten " . Should I introduce him to some kids that

I've seen. When was the last time he visited a kindergarten? Of course they

don't come in for banding because it is too late. Now that I'm the mom of a kid

with a funny shaped head (brachy in our case) I notice lots of kids with

imperfect heads.

As for the 2 yr cut off - heads do grow but much more slowly so difficult to see

progress with a band. I think even if it worked in theory, it wouldn't be right

to leave a kid in a band long enough to really get changes. If you look at a

growth chart for the head it really does flatten out considerably after age 2.

Also the skull starts to thicken a lot from what I understand which contributes

to the change in size - rather than it being only brain growth.

-christine

sydney, 4.5 yrs, starband grad

>

> I'm new to the group. It's nice to know we're not alone in our journey.

Tyler will be 12 mos Jul 11. Our pediatrician noticed his plagio at his 2 month

appt. We repositioned and saw some results. She referred us to a pediatric

neurosurgeon who told us not to worry about it - that his was mild. He also

told us that Tyler had torticollis, but we didn't believe him because his neck

tilt wasn't severe like we had seen in some internet pictures. But we did get

even more aggressive with positioning and saw more results.

>

> Finally, I realized he did have tort and took him to PT. He was in PT 2x a

week for almost two months, then 1x a week for a few more months. All told,

about 5.5 months of PT.

>

> In mid-Feb, we went to another pediatric neurosurgeon for another opinion,

since we didn't care much for the first guy. But we got pretty much the same

message... " He will grow out of it, but we can't guarantee it and we can't say

when. " They also said, " You don't hear about kindergartners with

plagiocephaly. " So, we left the appt deciding that we weren't going to pursue

the helmet (although we did ask him for a written scrip for one before we left

(just in case)). :-)

>

> Well now he is one year old and I can still see that it's there. I know its

mild. You can't really tell from the front. However, when I look at him in the

mirror, I can see that something about his face is slightly " off. " He has a

" protrusion " on the back of his head on the left side and above his left ear a

bit. His ears are also misaligned slightly.

>

> We have our evaluation with CT on Fri, Jul 9 at Paramus, NJ. We'll see

whether he's a candidate for the helmet and whether they think he will grow out

of it if we do nothing. I'm concerned though that he won't grow out of it and I

will feel guilty if I didn't do all I could for him when I had the chance.

>

> I've been seeing that some people post cephalic index numbers and other such

numbers. Will CT give us those numbers for Tyler at his appt?

>

> Also, I was thinking in general about brain & head growth. I know that the

companies tell you that at 2 yrs they can't help you anymore since brain growth

is pretty much complete by 2 yrs. But think about the size of the head of a 2

yr old and the size of the head of an adult. Clearly, an adult's head is

bigger. So obviously the skull is still growing after 2 yrs. Doesn't it stand

to reason that change can still happen after 2 yrs? Does anyone know anything

more scientific about this?

>

> Anyway, I've rambled on long enough. Thanks for " listening. "

>

>

>

[Guest guest]

Hi,

My 25 month old is still in his band. I still see a tiny bit of

improvement since a month ago. We've also done alternative treatments,

so I don't know how much is from the band. At the rate we see

improvement now, it would take a VERY, VERY long time to get

substantial improvement even for mild plagio. So, I can understand not

starting a band after around age 2. For example, my 5.5 year old has a

little plagio that I would LOVE to be able to treat, but I wouldn't put

a helmet on him, even if given the option for a night band. After 13

months of aggressive treatment for mild/mod plagio, my 2 year old

almost doesn't have plagio anymore. What is left is very mild

flattening on the upper back right, ridging at the sutures, and a

slightly bent right ear. For us a tiny bit of improvement is worth it

since it is a higher percentage of what is left and the helmet isn't

doing any harm.

-Kathy, mom to 25 months, and 5.5 years

christineashok wrote:

Hi,

glad to hear you're starting on a band. Your neuro is an idiot to say

"you don't hear about plagio in kindergarten". Should I introduce him

to some kids that I've seen. When was the last time he visited a

kindergarten? Of course they don't come in for banding because it is

too late. Now that I'm the mom of a kid with a funny shaped head

(brachy in our case) I notice lots of kids with imperfect heads.

As for the 2 yr cut off - heads do grow but much more slowly so

difficult to see progress with a band. I think even if it worked in

theory, it wouldn't be right to leave a kid in a band long enough to

really get changes. If you look at a growth chart for the head it

really does flatten out considerably after age 2. Also the skull starts

to thicken a lot from what I understand which contributes to the change

in size - rather than it being only brain growth.

-christine

sydney, 4.5 yrs, starband grad

>

> I'm new to the group. It's nice to know we're not alone in our

journey. Tyler will be 12 mos Jul 11. Our pediatrician noticed his

plagio at his 2 month appt. We repositioned and saw some results. She

referred us to a pediatric neurosurgeon who told us not to worry about

it - that his was mild. He also told us that Tyler had torticollis, but

we didn't believe him because his neck tilt wasn't severe like we had

seen in some internet pictures. But we did get even more aggressive

with positioning and saw more results.

>

> Finally, I realized he did have tort and took him to PT. He was in

PT 2x a week for almost two months, then 1x a week for a few more

months. All told, about 5.5 months of PT.

>

> In mid-Feb, we went to another pediatric neurosurgeon for another

opinion, since we didn't care much for the first guy. But we got pretty

much the same message... "He will grow out of it, but we can't

guarantee it and we can't say when." They also said, "You don't hear

about kindergartners with plagiocephaly." So, we left the appt deciding

that we weren't going to pursue the helmet (although we did ask him for

a written scrip for one before we left (just in case)). :-)

>

> Well now he is one year old and I can still see that it's there. I

know its mild. You can't really tell from the front. However, when I

look at him in the mirror, I can see that something about his face is

slightly "off." He has a "protrusion" on the back of his head on the

left side and above his left ear a bit. His ears are also misaligned

slightly.

>

> We have our evaluation with CT on Fri, Jul 9 at Paramus, NJ. We'll

see whether he's a candidate for the helmet and whether they think he

will grow out of it if we do nothing. I'm concerned though that he

won't grow out of it and I will feel guilty if I didn't do all I could

for him when I had the chance.

>

> I've been seeing that some people post cephalic index numbers and

other such numbers. Will CT give us those numbers for Tyler at his appt?

>

> Also, I was thinking in general about brain & head growth. I

know that the companies tell you that at 2 yrs they can't help you

anymore since brain growth is pretty much complete by 2 yrs. But think

about the size of the head of a 2 yr old and the size of the head of an

adult. Clearly, an adult's head is bigger. So obviously the skull is

still growing after 2 yrs. Doesn't it stand to reason that change can

still happen after 2 yrs? Does anyone know anything more scientific

about this?

>

> Anyway, I've rambled on long enough. Thanks for "listening."

>

>

>

[Guest guest]

I agree 100 percent with . We did not start pursuing a band until about the same age. Unfortunately, it took over 2 months to get there, but we were more in the dark than you when we started the process. There is still room for improvement, but I would get going as quickly as you can.

After age 2, the only real options are alternative treatments and the changes are much slower. In fact, the changes are slower after 1 year and then again they slow down after about 18 months. You want to do what you can now. If CT recommends a band, then I would go for it. It isn't too late yet. Oh - andyYou may have to ask them for your measurement numbers if you want them since they go more on a wholistic approach. They do the numbers for insurance purposes only.

, mom to , 2 3/4 years

STARband grad May 2009

Chiro and CST

land

From: christineashok <christineashok@...>Plagiocephaly Sent: Sun, July 4, 2010 6:20:07 AMSubject: Re: newbie - our story & a few questions

Hi,glad to hear you're starting on a band. Your neuro is an idiot to say "you don't hear about plagio in kindergarten". Should I introduce him to some kids that I've seen. When was the last time he visited a kindergarten? Of course they don't come in for banding because it is too late. Now that I'm the mom of a kid with a funny shaped head (brachy in our case) I notice lots of kids with imperfect heads. As for the 2 yr cut off - heads do grow but much more slowly so difficult to see progress with a band. I think even if it worked in theory, it wouldn't be right to leave a kid in a band long enough to really get changes. If you look at a growth chart for the head it really does flatten out considerably after age 2. Also the skull starts to thicken a lot from what I understand which contributes to the change in size - rather than it being only brain growth. -christinesydney, 4.5 yrs, starband grad>> I'm new to the group. It's nice to know we're not alone in our journey. Tyler will be 12 mos Jul 11. Our pediatrician noticed his plagio at his 2 month appt. We repositioned and saw some results. She referred us to a pediatric neurosurgeon who told us not to worry about it - that his was mild. He also told us that Tyler had torticollis, but we didn't believe him because his neck tilt wasn't severe like we had seen in some internet pictures. But we did get even more aggressive with positioning and saw more results.> > Finally, I realized he did have tort and took him to PT. He was in PT 2x a week for almost two months, then 1x a week for a few more months. All told, about 5.5 months of PT.> > In mid-Feb, we went to

another pediatric neurosurgeon for another opinion, since we didn't care much for the first guy. But we got pretty much the same message... "He will grow out of it, but we can't guarantee it and we can't say when." They also said, "You don't hear about kindergartners with plagiocephaly." So, we left the appt deciding that we weren't going to pursue the helmet (although we did ask him for a written scrip for one before we left (just in case)). :-)> > Well now he is one year old and I can still see that it's there. I know its mild. You can't really tell from the front. However, when I look at him in the mirror, I can see that something about his face is slightly "off." He has a "protrusion" on the back of his head on the left side and above his left ear a bit. His ears are also misaligned slightly.> > We have our evaluation with CT on Fri, Jul 9 at Paramus, NJ. We'll see whether he's a candidate for the helmet and whether they

think he will grow out of it if we do nothing. I'm concerned though that he won't grow out of it and I will feel guilty if I didn't do all I could for him when I had the chance.> > I've been seeing that some people post cephalic index numbers and other such numbers. Will CT give us those numbers for Tyler at his appt?> > Also, I was thinking in general about brain & head growth. I know that the companies tell you that at 2 yrs they can't help you anymore since brain growth is pretty much complete by 2 yrs. But think about the size of the head of a 2 yr old and the size of the head of an adult. Clearly, an adult's head is bigger. So obviously the skull is still growing after 2 yrs. Doesn't it stand to reason that change can still happen after 2 yrs? Does anyone know anything more scientific about this?> > Anyway, I've rambled on long enough. Thanks for "listening."> >

>

[Guest guest]

My doc missed my son's tort as well. I really think they should screen for it

during the regular checkups, but I get the impression that they don't know

nearly as much about plagio and tort as they should.

What really got me was that the first neurosurgeon we saw said our son had

plagio but still didn't tell us he had tort, even after I complained that he

only wanted to use his left side most of the time. He actually told me he wasn't

convinced that what I was saying was even true! The regular doctor I can

understand since she didn't know much about plagio and tort, but the

neurosurgeon should have known better!

Anyway, I also figured out that my son had tort on my own, but it wasn't until

he was 8 months old. It's good that you are getting Tyler treated asap. BTW, my

son is going to be 1 on the 29th, so they are almost the same age! Best of luck

with treatment!

>

> I'm new to the group. It's nice to know we're not alone in our journey.

Tyler will be 12 mos Jul 11. Our pediatrician noticed his plagio at his 2 month

appt. We repositioned and saw some results. She referred us to a pediatric

neurosurgeon who told us not to worry about it - that his was mild. He also

told us that Tyler had torticollis, but we didn't believe him because his neck

tilt wasn't severe like we had seen in some internet pictures. But we did get

even more aggressive with positioning and saw more results.

>

> Finally, I realized he did have tort and took him to PT. He was in PT 2x a

week for almost two months, then 1x a week for a few more months. All told,

about 5.5 months of PT.

>

> In mid-Feb, we went to another pediatric neurosurgeon for another opinion,

since we didn't care much for the first guy. But we got pretty much the same

message... " He will grow out of it, but we can't guarantee it and we can't say

when. " They also said, " You don't hear about kindergartners with

plagiocephaly. " So, we left the appt deciding that we weren't going to pursue

the helmet (although we did ask him for a written scrip for one before we left

(just in case)). :-)

>

> Well now he is one year old and I can still see that it's there. I know its

mild. You can't really tell from the front. However, when I look at him in the

mirror, I can see that something about his face is slightly " off. " He has a

" protrusion " on the back of his head on the left side and above his left ear a

bit. His ears are also misaligned slightly.

>

> We have our evaluation with CT on Fri, Jul 9 at Paramus, NJ. We'll see

whether he's a candidate for the helmet and whether they think he will grow out

of it if we do nothing. I'm concerned though that he won't grow out of it and I

will feel guilty if I didn't do all I could for him when I had the chance.

>

> I've been seeing that some people post cephalic index numbers and other such

numbers. Will CT give us those numbers for Tyler at his appt?

>

> Also, I was thinking in general about brain & head growth. I know that the

companies tell you that at 2 yrs they can't help you anymore since brain growth

is pretty much complete by 2 yrs. But think about the size of the head of a 2

yr old and the size of the head of an adult. Clearly, an adult's head is

bigger. So obviously the skull is still growing after 2 yrs. Doesn't it stand

to reason that change can still happen after 2 yrs? Does anyone know anything

more scientific about this?

>

> Anyway, I've rambled on long enough. Thanks for " listening. "

>

>

>

[Guest guest]

Thank you all for your replies. I am definitely looking forward to hearing what

CT says when we go for our eval on Friday. If they say he is a candidate, we

will likely pursue it. After looking around on this group and the olderplag

group, I've come to realize that it is unlikely his head will round out on its

own. I will be sure to ask CT for his measurement numbers and exactly what they

mean too. I am so curious as to how far off the norm he is. I'm somewhat

concerned that his case is so mild that some kids are graduating from bands with

heads shaped like his is currently, so maybe they won't be able to do anything.

But I guess I should quit worrying about it and just wait until Friday. ;-P

Thanks again for your support!

[Guest guest]

Hi,

Most likely if it bothers you, CT will be able to band. If CT cannot

band because the head is too mild, you can also try a Starband

provider. There have been cases where CT refused to band, yet the baby

was helped by a Starband. Something similar happened to us. I

thought that would need to take his Starband off after 6 months

when he was 18 months, but I wasn't going to be happy with his head

shape then. So, we traveled to CT for an evaluation for a second

band. At that point had 5 to 6mm asymmetry, and his head still

looked bad to me. CT refused us a band, since they were concerned it

could rotate too much and even possibly make 's head worse.

Thankfully, our Starband provider allowed us to keep his old helmet on,

and improved substantially since then. The bottom half of 's

head looks normal to me now, and the remaining asymmetry on the top is

very mild. In addition to a band, you can also try alternative

treatments. Just don't give up.

Best,

Kathy, mom to 25 months

rharvell wrote:

Thank you all for your replies. I am definitely looking forward to

hearing what CT says when we go for our eval on Friday. If they say he

is a candidate, we will likely pursue it. After looking around on this

group and the olderplag group, I've come to realize that it is unlikely

his head will round out on its own. I will be sure to ask CT for his

measurement numbers and exactly what they mean too. I am so curious as

to how far off the norm he is. I'm somewhat concerned that his case is

so mild that some kids are graduating from bands with heads shaped like

his is currently, so maybe they won't be able to do anything. But I

guess I should quit worrying about it and just wait until Friday. ;-P

Thanks again for your support!