Re: Has anyone not gotten the band and regret it?

[Guest guest]

the place to ask that is the olderplagio group, here mostly the untreated babies are babies who were treated with major repositioning but on there you will find ppl who didnt treat and regret it or are now trying to treat with cst or other alternative treatment b/c theiur child is too old for the band

On Wed, Aug 25, 2010 at 1:13 AM, coconutgrover <coconutgrover@...> wrote:

 

All of the pediatricians and physical therapists I've talked to say that plagio will get better on its own. There is no doubting that bands will help, but has anyone opted to NOT get the band and then regret it later on?

-- -mommy to Emma, Becca, , , , and Leah

[Guest guest]

I've been on this list and the older plagio list for over a year. I've

never heard of anyone regretting getting one! Many people regret not.

I have an older son with very mild plagio. He may not have even been

severe enough for a band, and we didn't know about them. He still has

plagio and it bothers me. Medically, the concern is his neck since he

was sleeping with his head resting on the flat spot for so many years,

and his neck is off. Usually, plagio does not resolve on its own,

especially after 6 months.

-Kathy, mom to 2 years and almost 6 years

coconutgrover wrote:

All of the pediatricians and physical therapists I've talked to

say that plagio will get better on its own. There is no doubting that

bands will help, but has anyone opted to NOT get the band and then

regret it later on?

[Guest guest]

I think this depends on how severe the plagio is. I've spoken with people whose child has had plagio mildly and it corrected itself. I've also spoken with some very upset parents who didn't band because their pediatrician's said "don't worry, it will work it out" and it never did becuase it was so severe. My son's plagio was almost severe and we banded at 5 months. I can not imagine the flatness fixing itself without a helmet.

Good luck!

Christy n

410.984.2962

From: coconutgrover <coconutgrover@...>Plagiocephaly Sent: Wed, August 25, 2010 1:13:22 AMSubject: Has anyone not gotten the band and regret it?

All of the pediatricians and physical therapists I've talked to say that plagio will get better on its own. There is no doubting that bands will help, but has anyone opted to NOT get the band and then regret it later on?

[Guest guest]

I have a ton of regret for not banding my now-20-month-old daughter.

So much so that we are pursuing banding her now, despite the

challenges. I posted the below email last week, which details my

regret, in case you might find it useful. Like the advice that I

received and - unfortunately - ignored, I would encourage you to band

if you have any concerns:

Hello! I'm not new to the group, but it's been quite a while since I

last posted . . .

I am " returning, " having ignored advice that some of you offered -

and which I now deeply regret not having followed, hoping to get some

more advice and encouragement. Please bear with the long post.

My daugther Zia (20 months today) had/has what I believe would be

described as relatively mild plagio and mild-moderate brachy. I don't

know her " numbers " currently, though if I am remembering correctly

from our last STARband scan (11/2009), she had 1-3mm assymetry and

the other number was an 89. I am guessing just from my eyeball sense

that the numbers are still about the same, with perhaps some slight

improvement.

Her borderline case has made the whole experience (for me) very

difficult. NO ONE ELSE - husband, grandmothers, friends, peds and

staff, STARband orthotist at CIRS in Oakland, even my therapist -

seems to see what I see. I felt making the decision last December to

proceed with getting a band was going against too much opposition.

And I had reservations/hopes myself, since there had been noticeable

improvement without a band. And we live about 3 hours away from the

closest place to get a helmet (we're in Chico and would travel to

CIRS in Oakland). And I recall from this listserv reading about other

parents who shared about how they saw continued improvement after

graduating from the band - which I thought might apply to us, even

though we never did a band. And my daughter has some sensory issues,

so I wasn't sure that she would tolerate a helmet as well as others.

Fast forward to the present: I don't ever look at my daughter's head

without assessing its shape. And most of the time, I look and am

pleased/satisfied. However, when she is sweaty and has bad bed head

or when her head is totally wet (pool and bath), I always get a

sinking feeling in my stomach because it looks to my eye like her

head is a bit " smushed " and is " just not all there. "

About two weeks ago, I had a dreadful thought that is finally getting

me back in action: I imagined that on her wedding day (whenever that

may be ;-)), I would be looking at her head shape and feeling regret,

rather than experiencing all the other emotions that one should feel

in that situation. And it made me ill. So I finally communicated with

my husband that I wanted to move forward with a helmet if at all

possible. He still doesn't support the decision, but he is willing to

go along with it for the sake of my anguish and our marriage.

The complications: Since she is over 18 months, I need a doctor's

note indicating the necessity. Since my ped believes that the issue

is " resolved, " I see this as a potential road block, which I have not

yet attempted to address. I have a plan, though, and am hopeful that

I will have some resolution by early next week. Additionally, I still

have reservations about her tolerating a helmet - and presumably now

more than it would have been had we done this earlier.

So . . . any experience with banding older babies, sensory issues,

dealing with regret, dealing with everyone else who thinks that what

you are doing isn't necessary, etc. would all be greatly appreciated.

One last thing: In addition to the plagio issues, my daughter also

has some developmental delays. They appear mild (i.e. even those

people who know her well are surprised when I tell them), but there

is sufficient concern, confirmed by assessments, such that we are

working with an " intervention specialist " 4 days a week for 1-2 hours

each day (through a State- and Federally-funded program). No one I've

spoken to seems to believe that there is a connection between plagio

and developmental delays; however, I am finding that surprising. In

our case, where torticollis wasn't present, I believe that her not

turning her head while sleeping and her unwillingness to do " tummy

time, " may have been early indicators of her developmental delays. I

certainly don't expect there to be a correlation for all cases, but

perhaps some of you have some similar experiences or hunches.

My daughter doesn't have a diagnosis yet (and the assessment isn't

generally done until at least 2 years), but the intervention she is

receiving is the same as she would be receiving if she were diagnosed

with ASD (autism spectrum disorder). She may never get that

diagnosis, in part because of the early interventions that we are

providing, but I thought it was worth mentioning so you will have a

sense of the types of developmental delays that I am referring to.

Thank you in advance to any of you who are able to respond!

Amy

daughter Zia, 20 months

Chico, CA

p.s. I've posted (in the V-Z folder) a bunch of pictures of my

daughter taken over the last couple of months.

On Aug 24, 2010, at 10:13 PM, coconutgrover wrote:

> All of the pediatricians and physical therapists I've talked to say

> that plagio will get better on its own. There is no doubting that

> bands will help, but has anyone opted to NOT get the band and then

> regret it later on?

>

>

>

> ------------------------------------

>

> For more plagio info

[Guest guest]

Honestly, I think you need to just try to put the whole thing behind you. I

would be thrilled if my son's numbers were 89. His is 97, and I had opposition

to banding him from my whole family.

>

> > All of the pediatricians and physical therapists I've talked to say

> > that plagio will get better on its own. There is no doubting that

> > bands will help, but has anyone opted to NOT get the band and then

> > regret it later on?

> >

> >

> >

> > ------------------------------------

> >

> > For more plagio info

[Guest guest]

First let me say I'm sorry you have had such a tough time so far with all of

this. It sounds like it has been really stressful for you. Second, I think you

are making the right choice - if you're not happy now, it is best to try and get

some improvement rather than just assuming it is too late. I know some doctors

think brachy is less of an issue than plagio, but with my brachy daughter I know

it shouldn't be ignored.

As for delays, I'm no expert. My daughter didn't have any (we are thankful). But

tummy time is a tricky one. Just skipping tummy time can contribute to plagio

and delays in and of itself. Tummy time builds upper body and neck strength and

keeps children off their head (or at least resting on a different part). I'm not

really sure if tummy time is the cause or the effect of something else, but it

can be a factor. Also not turning her head while sleeping could indicate mild

tort that wasn't diagnosed, or could be that she just got comfy on her flat

spot. Another thing to encourage head turning is physically repositioning the

baby and/or crib nightly so interesting things like mom, dad, the light etc

aren't always on one side. At 20 mo this isn't really helpful to you, but I just

wanted to mention these could have been factors in what you've described with

your daughter.

Now that you have decided to move forward with banding, I wish you lots of luck

and growth and hope it will prove to be worthwhile. Please keep us posted on

your progress.

-christine

sydney, 4.5 yrs, starband grad

>

> > All of the pediatricians and physical therapists I've talked to say

> > that plagio will get better on its own. There is no doubting that

> > bands will help, but has anyone opted to NOT get the band and then

> > regret it later on?

> >

> >

> >

> > ------------------------------------

> >

> > For more plagio info