Re: Anyone out there NOT banding?

April 17, 2002

-

I got pretty much the same story at our ped. The one who dx Dane

with plagio and tort said helmets were " unethical " before 12

months. Our reg ped at that same practice said she thought his head

would round out. My husband and I decided that we didn't want to

chance with " maybe " and " should, " so we decided to go with the

band. We like both of them very much, but disagree on this issue.

There is such a small window of opportunity that we decided to take

advantage of it.

My husband kept telling me there was a guy at our college with a

lopsided head and he didn't want Dane to look like that (said this

even before the dx). Sunday he finally pulled out the yearbook and

showed me who he was talking about. OMG! I can't believe I forgot

about this guy. He couldn't move his head to the right. He would

have to move his body instead. He had was extremely flat on the

left and the right side of his face was a bit sunken. Of course I'm

sure his case was severe. He was athletic, but extremely shy. He

never looked anyone in the eye.

We aggressively repositioned Dane for 2 months. We saw some very

good progress. Then when he was 4 months old, the progress

stagnated. We saw no improvement after that. Dane was banded at 5

months and within a week his head was " shapin' up. "

You're right we all have imperfect heads. Mine is pretty lumpy I

think. The flat spot bothered us, but to us the ear and facial

asymmetry was unacceptable. Since banding would definetly yield the

results we wanted, we decided it wasn't worth risking it. A lot of

people told us we were crazy and that he was fine. Now when they

see him and look at his old pictures they realize we made the best

decision for him. Of course this was just our decision and I'm sure

Dane's case is different than your daughters.

How old is your daughter? If she is young, you can get some great

benefits from repositioning, especially if her tort is improving.

In the photos section there is at least one baby who was

repositioned successfully.

Good luck!

> My daughter was breech and born with a crooked head. She was

> diagnosed with tort at 5 weeks, so repositioning was a challenge.

> Her tilt is now gone, and her ROM is about 90%. But her head is

> still lumpy - especially when viewed from the top. Flat on the

left

> back, bulging a little in the back on the right, with a small

ridge

> on top - to the left of her soft spot.

>

> After asking about her head shape at 3 doctor visits and 2 pt

visits,

> we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> pediatrician kept telling me that some assymetry is normal and she

> really didn't need to be treated.)

>

> And here was the Ped. Neuro's advice: If it was his daughter, he

> would not band her. He said that he used to band babies regulary,

> and then couldn't get the bands for a time. During that period,

he

> found that they were correcting at about the same rate. He went

on

> to say that the clinical studies are being done NOW so he had no

hard-

> and-fast evidence for us, although you rarely find anyone over the

> age of 2 with severe head and/or facial assymetry. We all have a

> little, right?

>

> As far as docs go, we liked him. He has an excellent reputation

(we

> have personal friends we respect that have been to him), he was

very

> personable and talked to us for a LONG time. He even told us that

if

> we really wanted to band her, he would provide the referral to

> someone in Dallas. My head says he is probably right, but my

heart

> is worried about the consequences if he is wrong... and we won't

know

> that until it's too late!

>

> I've read many, many, many, many, many of your posts and it seems

> that everyone is banding. Is there anyone out that who is not?

How

> is it going? Any advice?

>

> Thanks,

>

April 18, 2002

Hi ,

We have quite a few parents in our group who have not banded their

child and have received great correction of their childs head shape.

Hopefully they will chime in and share their experiences with you. I

just want to say that I think it is terrific that you found a neuro

that you like and trust, it makes all the difference! Good luck to

you and keep us up to date.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> My daughter was breech and born with a crooked head. She was

> diagnosed with tort at 5 weeks, so repositioning was a challenge.

> Her tilt is now gone, and her ROM is about 90%. But her head is

> still lumpy - especially when viewed from the top. Flat on the

left

> back, bulging a little in the back on the right, with a small ridge

> on top - to the left of her soft spot.

>

> After asking about her head shape at 3 doctor visits and 2 pt

visits,

> we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> pediatrician kept telling me that some assymetry is normal and she

> really didn't need to be treated.)

>

> And here was the Ped. Neuro's advice: If it was his daughter, he

> would not band her. He said that he used to band babies regulary,

> and then couldn't get the bands for a time. During that period, he

> found that they were correcting at about the same rate. He went on

> to say that the clinical studies are being done NOW so he had no

hard-

> and-fast evidence for us, although you rarely find anyone over the

> age of 2 with severe head and/or facial assymetry. We all have a

> little, right?

>

> As far as docs go, we liked him. He has an excellent reputation

(we

> have personal friends we respect that have been to him), he was

very

> personable and talked to us for a LONG time. He even told us that

if

> we really wanted to band her, he would provide the referral to

> someone in Dallas. My head says he is probably right, but my heart

> is worried about the consequences if he is wrong... and we won't

know

> that until it's too late!

>

> I've read many, many, many, many, many of your posts and it seems

> that everyone is banding. Is there anyone out that who is not?

How

> is it going? Any advice?

>

> Thanks,

>

April 18, 2002

Hi, my name is I am from New Zealand.We do not have a band on

our son(they do not do them in New Zealand)So we have repositioned.My

son is now 8 months old and there has been dramatic changes to his

head shape,and while it is not perfect and never will be, who's head

shape is.I think you just have to go with your gut feelings.Good

luck,and if you need help with repositioning I can give you some

great advice on that. -- In

Plagiocephaly@y..., " rogersgeobears " <ccrogers@j...> wrote:

> My daughter was breech and born with a crooked head. She was

> diagnosed with tort at 5 weeks, so repositioning was a challenge.

> Her tilt is now gone, and her ROM is about 90%. But her head is

> still lumpy - especially when viewed from the top. Flat on the

left

> back, bulging a little in the back on the right, with a small ridge

> on top - to the left of her soft spot.

>

> After asking about her head shape at 3 doctor visits and 2 pt

visits,

> we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> pediatrician kept telling me that some assymetry is normal and she

> really didn't need to be treated.)

>

> And here was the Ped. Neuro's advice: If it was his daughter, he

> would not band her. He said that he used to band babies regulary,

> and then couldn't get the bands for a time. During that period, he

> found that they were correcting at about the same rate. He went on

> to say that the clinical studies are being done NOW so he had no

hard-

> and-fast evidence for us, although you rarely find anyone over the

> age of 2 with severe head and/or facial assymetry. We all have a

> little, right?

>

> As far as docs go, we liked him. He has an excellent reputation

(we

> have personal friends we respect that have been to him), he was

very

> personable and talked to us for a LONG time. He even told us that

if

> we really wanted to band her, he would provide the referral to

> someone in Dallas. My head says he is probably right, but my heart

> is worried about the consequences if he is wrong... and we won't

know

> that until it's too late!

>

> I've read many, many, many, many, many of your posts and it seems

> that everyone is banding. Is there anyone out that who is not?

How

> is it going? Any advice?

>

> Thanks,

>

April 19, 2002

Hi ,

That is so great that repositioning has worked for you! Could you share some

of your tip/ strategies as this can be so difficult (as I'm sure you know)

once they get active. I am sure many members would appreciate this info who

are going through the motions of figuring all of this out right now. Thanks

so much for your input- we need you here to talk about your success with

repositioning!

' Mom

April 27, 2002

-Hi! My son has been diagnosed with a mild case of plagio, according

to his pediatrician and neurosurgeon. They do not believe in banding

and feel that his head will round out by age 3 or 4. He is now

17mos. So far I can say his head is better but the plagio is still

there. I'm hopeful that the doctors are right and by age 4 it will

only be noticeable if looking closely. The neurosurgeon says that

the skull does not fully fuse and that the skull base will continue

to grow slowly. This neurosurgeon also says that banding does not

necessarily do a better job then just waiting.

I obsessed about this for weeks, but have now decided to just

wait it out. I don't focus on it as much and no one else has ever

noticed it. I'm keeping track with pictures and video for

comparison. Good luck with your decision. I know it sucks having to

even think about it! -- In

Plagiocephaly@y..., " rogersgeobears " <ccrogers@j...> wrote:

> My daughter was breech and born with a crooked head. She was

> diagnosed with tort at 5 weeks, so repositioning was a challenge.

> Her tilt is now gone, and her ROM is about 90%. But her head is

> still lumpy - especially when viewed from the top. Flat on the

left

> back, bulging a little in the back on the right, with a small ridge

> on top - to the left of her soft spot.

>

> After asking about her head shape at 3 doctor visits and 2 pt

visits,

> we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> pediatrician kept telling me that some assymetry is normal and she

> really didn't need to be treated.)

>

> And here was the Ped. Neuro's advice: If it was his daughter, he

> would not band her. He said that he used to band babies regulary,

> and then couldn't get the bands for a time. During that period, he

> found that they were correcting at about the same rate. He went on

> to say that the clinical studies are being done NOW so he had no

hard-

> and-fast evidence for us, although you rarely find anyone over the

> age of 2 with severe head and/or facial assymetry. We all have a

> little, right?

>

> As far as docs go, we liked him. He has an excellent reputation

(we

> have personal friends we respect that have been to him), he was

very

> personable and talked to us for a LONG time. He even told us that

if

> we really wanted to band her, he would provide the referral to

> someone in Dallas. My head says he is probably right, but my heart

> is worried about the consequences if he is wrong... and we won't

know

> that until it's too late!

>

> I've read many, many, many, many, many of your posts and it seems

> that everyone is banding. Is there anyone out that who is not?

How

> is it going? Any advice?

>

> Thanks,

>

April 27, 2002

Hello!

My Child finally saw a neuro surgeon at 19 months. Her head had

gotten better by then - but she was still considered a 11/15 or a

moderate to servere case. Based on the pics I brought to the neuro

surgeon of when she was 5-6 months old - he told me she had been a

severe case. Her fontenel was still open at 19 months and we were

told we could band, although she would be the oldest child they had

ever sent for banding (the second oldest was 14 months) We were also

told that Mother Nature would continue to round it out although it

may never be perfect.

We though about it, and if she had been under 14-15 months, we would

have banded, but now she was 19 months and could undo zippers,

buttons clasps, and get undressed and I wondeded how hard it would be

to actually keep a helmet on. We decided to not band due to how old

she was.

I haven't posted in here for awhile as I have been really busy with

my 6 month old, but Kayleigh is now 22 months old and she still has a

pretty flat area. As her hair grows more and more it is less

noticeable, but when her head gets wet - it's still pretty there, but

I was looking at a pic of her at 17 months, and I would say that in

the 5 months that have passed there has been some improvement.

My decision not to band was primarily based on her age, and had we

seen a neauro surgeon earlier - I would have DEFINATELY had her

banded! I have seen it help SOOOO many children - especially under

the age of 12 months!

Her full plagio story and website is at

http://www.parksolutions.com/plagio

- in Canada, mom of A Beautiful Plagio daughter named Kayleigh

> > My daughter was breech and born with a crooked head. She was

> > diagnosed with tort at 5 weeks, so repositioning was a

challenge.

> > Her tilt is now gone, and her ROM is about 90%. But her head is

> > still lumpy - especially when viewed from the top. Flat on the

> left

> > back, bulging a little in the back on the right, with a small

ridge

> > on top - to the left of her soft spot.

> >

> > After asking about her head shape at 3 doctor visits and 2 pt

> visits,

> > we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> > pediatrician kept telling me that some assymetry is normal and

she

> > really didn't need to be treated.)

> >

> > And here was the Ped. Neuro's advice: If it was his daughter, he

> > would not band her. He said that he used to band babies

regulary,

> > and then couldn't get the bands for a time. During that period,

he

> > found that they were correcting at about the same rate. He went

on

> > to say that the clinical studies are being done NOW so he had no

> hard-

> > and-fast evidence for us, although you rarely find anyone over

the

> > age of 2 with severe head and/or facial assymetry. We all have a

> > little, right?

> >

> > As far as docs go, we liked him. He has an excellent reputation

> (we

> > have personal friends we respect that have been to him), he was

> very

> > personable and talked to us for a LONG time. He even told us

that

> if

> > we really wanted to band her, he would provide the referral to

> > someone in Dallas. My head says he is probably right, but my

heart

> > is worried about the consequences if he is wrong... and we won't

> know

> > that until it's too late!

> >

> > I've read many, many, many, many, many of your posts and it seems

> > that everyone is banding. Is there anyone out that who is not?

> How

> > is it going? Any advice?

> >

> > Thanks,

> >

April 27, 2002

I forgot to mention that she had and still has hardly no facial

assymetry - just her ears were 2 cm mis-aligned which will probably

never improve - so fitting for glasses will always be a problem.

Her " bulging " was all on the left back side of her head instead of in

her face (the flat spot is along the right back)

-

> > > My daughter was breech and born with a crooked head. She was

> > > diagnosed with tort at 5 weeks, so repositioning was a

> challenge.

> > > Her tilt is now gone, and her ROM is about 90%. But her head

is

> > > still lumpy - especially when viewed from the top. Flat on the

> > left

> > > back, bulging a little in the back on the right, with a small

> ridge

> > > on top - to the left of her soft spot.

> > >

> > > After asking about her head shape at 3 doctor visits and 2 pt

> > visits,

> > > we FINALLY got a referral to a Pediatric Neurosurgeon. (Our

> > > pediatrician kept telling me that some assymetry is normal and

> she

> > > really didn't need to be treated.)

> > >

> > > And here was the Ped. Neuro's advice: If it was his daughter,

he

> > > would not band her. He said that he used to band babies

> regulary,

> > > and then couldn't get the bands for a time. During that

period,

> he

> > > found that they were correcting at about the same rate. He

went

> on

> > > to say that the clinical studies are being done NOW so he had

no

> > hard-

> > > and-fast evidence for us, although you rarely find anyone over

> the

> > > age of 2 with severe head and/or facial assymetry. We all have

a

> > > little, right?

> > >

> > > As far as docs go, we liked him. He has an excellent

reputation

> > (we

> > > have personal friends we respect that have been to him), he was

> > very

> > > personable and talked to us for a LONG time. He even told us

> that

> > if

> > > we really wanted to band her, he would provide the referral to

> > > someone in Dallas. My head says he is probably right, but my

> heart

> > > is worried about the consequences if he is wrong... and we

won't

> > know

> > > that until it's too late!

> > >

> > > I've read many, many, many, many, many of your posts and it

seems

> > > that everyone is banding. Is there anyone out that who is

not?

> > How

> > > is it going? Any advice?

> > >

> > > Thanks,

> > >

April 27, 2002

,

Welcome back! I'm sure you really have your hands full! It was good to hear

from you - thanks for sharing your story with us.

Marci (Mom to )

Oklahoma

April 27, 2002