Referred to STARBand & consumed by guilt

[Guest guest]

Greetings--I've followed along for the past month or so since we noticed a flat

spot behind the right ear on one of our twin girls, now 4 months old.

We took her to the ped back when we noticed and he said there was nothing to

worry about and not to worry. He suggested torticollis and we started

exercises, as much as possible. Fast forward to their 4 month visit the other

week and I pressured the ped into a referral to a plastic surgeon (there are no

specific banding centers here in Atlanta).

Well, today the ps said our little lady has a moderate case of plagio-- even

saying on a scale of 1 to 10 that it would be a 6 or 7. Honestly, we were not

prepared for that type of result-- naively, we thought the ps would reiterate

the ped in saying that we're over-reacting and such.

The ps was kind, but very vague. He said he would support our decision to get a

helmet or would also support the 'wait and see' approach.

He gave a script to have measurements taken for STARBand at Children's Hospital

here and we can't get in until December 23rd.

At this point, my husband and I are wanting to move forward on the helmet-- it

would be the dead of winter and with her age it would be over and done before

the spring gets here. That's the selfish parts of us-- wanting it over in the

wintertime to avoid too much to deal with in public. It's terrible, I know.

I'm riddled with guilt. How could I have not noticed FOR MONTHS that she

favored one side and there was a flat spot coming? It honestly seems like it

just appeared one day, but I know that's not truly the case.

How does everyone deal with the guilt, if you experience/experienced it? I know

it's not something that I intentionally did, but it doesn't discount the

incredible weight on my shoulders.

Thanks in advance.

Tracey

[Guest guest]

Don't feel guilty. Plagio is very common with twins and often starts in utero

because the babies are cramped for space. I would ask the starband clinic to put

you on a cancellation list and call lyou if someone cancels. I don't have much

time to respond now, but you're starting at a good time and should see results.

You're doing your best and shouldn't feel guilty.

-christine

sydney, 3.5 yrs, starband grad

>

> Greetings--I've followed along for the past month or so since we noticed a

flat spot behind the right ear on one of our twin girls, now 4 months old.

>

> We took her to the ped back when we noticed and he said there was nothing to

worry about and not to worry. He suggested torticollis and we started

exercises, as much as possible. Fast forward to their 4 month visit the other

week and I pressured the ped into a referral to a plastic surgeon (there are no

specific banding centers here in Atlanta).

>

> Well, today the ps said our little lady has a moderate case of plagio-- even

saying on a scale of 1 to 10 that it would be a 6 or 7. Honestly, we were not

prepared for that type of result-- naively, we thought the ps would reiterate

the ped in saying that we're over-reacting and such.

>

> The ps was kind, but very vague. He said he would support our decision to get

a helmet or would also support the 'wait and see' approach.

>

> He gave a script to have measurements taken for STARBand at Children's

Hospital here and we can't get in until December 23rd.

>

> At this point, my husband and I are wanting to move forward on the helmet-- it

would be the dead of winter and with her age it would be over and done before

the spring gets here. That's the selfish parts of us-- wanting it over in the

wintertime to avoid too much to deal with in public. It's terrible, I know.

>

> I'm riddled with guilt. How could I have not noticed FOR MONTHS that she

favored one side and there was a flat spot coming? It honestly seems like it

just appeared one day, but I know that's not truly the case.

>

> How does everyone deal with the guilt, if you experience/experienced it? I

know it's not something that I intentionally did, but it doesn't discount the

incredible weight on my shoulders.

>

> Thanks in advance.

> Tracey

>

[Guest guest]

I'd like to thank everyone for your very kind responses. The guilt has been

just more than I ever imagined and every time I look at her sweet face it just

breaks my heart that I didn't notice her preference to one side.

Before I think I'm losing my mind, did anyone, before banding, think that their

child's head shape looked round one day, then just kinda flattened the next,

back to round the next and then terribly flat the next, and so on and so on?

On Friday, my husband and I swear her head was almost totally round for the

entire day. We were absolutely elated, thinking maybe it just 'popped.' But,

the elation was short-lived, as it was back to kinda flattened on Sat/Sun and

then seemed to change shape throughout today (good one hour and then flattened a

few later).

Again, the girls will be 5 months on the 19th, so I know their heads are still

soft and growing, but this is VERY strange.

And, for the excellent suggestion to try to get on a cancellation list in

advance of our 23rd appt, the Hospital unfortunately doesn't have one...grrrr!

Thanks in advance.

Tracey

>

> Greetings--I've followed along for the past month or so since we noticed a

flat spot behind the right ear on one of our twin girls, now 4 months old.

>

> We took her to the ped back when we noticed and he said there was nothing to

worry about and not to worry. He suggested torticollis and we started

exercises, as much as possible. Fast forward to their 4 month visit the other

week and I pressured the ped into a referral to a plastic surgeon (there are no

specific banding centers here in Atlanta).

>

> Well, today the ps said our little lady has a moderate case of plagio-- even

saying on a scale of 1 to 10 that it would be a 6 or 7. Honestly, we were not

prepared for that type of result-- naively, we thought the ps would reiterate

the ped in saying that we're over-reacting and such.

>

> The ps was kind, but very vague. He said he would support our decision to get

a helmet or would also support the 'wait and see' approach.

>

> He gave a script to have measurements taken for STARBand at Children's

Hospital here and we can't get in until December 23rd.

>

> At this point, my husband and I are wanting to move forward on the helmet-- it

would be the dead of winter and with her age it would be over and done before

the spring gets here. That's the selfish parts of us-- wanting it over in the

wintertime to avoid too much to deal with in public. It's terrible, I know.

>

> I'm riddled with guilt. How could I have not noticed FOR MONTHS that she

favored one side and there was a flat spot coming? It honestly seems like it

just appeared one day, but I know that's not truly the case.

>

> How does everyone deal with the guilt, if you experience/experienced it? I

know it's not something that I intentionally did, but it doesn't discount the

incredible weight on my shoulders.

>

> Thanks in advance.

> Tracey

>

[Guest guest]

Yes, there are good and bad days for me too! I've seen other people

write about this too and even for older plagio babies.

Maybe, their head shapes do really change. For us some other factors

are 's hair style, the angle I look at him, and my mood.

Best,

Kathy, mom to , 18 months

tandtc wrote:

I'd like to thank everyone for your very kind responses. The guilt

has been just more than I ever imagined and every time I look at her

sweet face it just breaks my heart that I didn't notice her preference

to one side.

Before I think I'm losing my mind, did anyone, before banding, think

that their child's head shape looked round one day, then just kinda

flattened the next, back to round the next and then terribly flat the

next, and so on and so on?

On Friday, my husband and I swear her head was almost totally round for

the entire day. We were absolutely elated, thinking maybe it just

'popped.' But, the elation was short-lived, as it was back to kinda

flattened on Sat/Sun and then seemed to change shape throughout today

(good one hour and then flattened a few later).

Again, the girls will be 5 months on the 19th, so I know their heads

are still soft and growing, but this is VERY strange.

And, for the excellent suggestion to try to get on a cancellation list

in advance of our 23rd appt, the Hospital unfortunately doesn't have

one...grrrr!

Thanks in advance.

Tracey

>

> Greetings--I've followed along for the past month or so since

we noticed a flat spot behind the right ear on one of our twin girls,

now 4 months old.

>

> We took her to the ped back when we noticed and he said there was

nothing to worry about and not to worry. He suggested torticollis and

we started exercises, as much as possible. Fast forward to their 4

month visit the other week and I pressured the ped into a referral to a

plastic surgeon (there are no specific banding centers here in Atlanta).

>

> Well, today the ps said our little lady has a moderate case of

plagio-- even saying on a scale of 1 to 10 that it would be a 6 or 7.

Honestly, we were not prepared for that type of result-- naively, we

thought the ps would reiterate the ped in saying that we're

over-reacting and such.

>

> The ps was kind, but very vague. He said he would support our

decision to get a helmet or would also support the 'wait and see'

approach.

>

> He gave a script to have measurements taken for STARBand at

Children's Hospital here and we can't get in until December 23rd.

>

> At this point, my husband and I are wanting to move forward on the

helmet-- it would be the dead of winter and with her age it would be

over and done before the spring gets here. That's the selfish parts of

us-- wanting it over in the wintertime to avoid too much to deal with

in public. It's terrible, I know.

>

> I'm riddled with guilt. How could I have not noticed FOR MONTHS

that she favored one side and there was a flat spot coming? It honestly

seems like it just appeared one day, but I know that's not truly the

case.

>

> How does everyone deal with the guilt, if you experience/experienced

it? I know it's not something that I intentionally did, but it doesn't

discount the incredible weight on my shoulders.

>

> Thanks in advance.

> Tracey

>

[Guest guest]

Hi Tracey,

We all seem to suffer from excessive guilt, but really you shouldn't. For the

most part we have done our best, and really didn't know about plagio/brachy. I

asked our ped about my daughter's flattening at 2 mo only to be told " don't

worry " , and it got significantly worse after that. However banding can improve

it a lot. I think seeing your baby's head rounder is just wishful thinking. I

remember when my daughter was scheduled to see a specialist I was convinced it

had improved slightly, but it really hadn't. I just really wanted to spare her

the band. In the end the band wasn't very difficult, and she improved a lot.

Even though the head is relatively soft, it doesn't really " pop " . you need

growth to fill in the flat areas and although babies grow fast, it isn't visible

on a daily basis. However if your baby is young you may see changes weekly once

she is in a band.

Are you getting physical therapy for the torticollis (preference for one side)?

Usually the therapist gives you stretches to do at home several times a day.

With this and repositioning when you can you may still see changes before your

appointment.

-christine

sydney, 3.5 yrs, starband grad

> >

> > Greetings--I've followed along for the past month or so since we noticed a

flat spot behind the right ear on one of our twin girls, now 4 months old.

> >

> > We took her to the ped back when we noticed and he said there was nothing to

worry about and not to worry. He suggested torticollis and we started

exercises, as much as possible. Fast forward to their 4 month visit the other

week and I pressured the ped into a referral to a plastic surgeon (there are no

specific banding centers here in Atlanta).

> >

> > Well, today the ps said our little lady has a moderate case of plagio-- even

saying on a scale of 1 to 10 that it would be a 6 or 7. Honestly, we were not

prepared for that type of result-- naively, we thought the ps would reiterate

the ped in saying that we're over-reacting and such.

> >

> > The ps was kind, but very vague. He said he would support our decision to

get a helmet or would also support the 'wait and see' approach.

> >

> > He gave a script to have measurements taken for STARBand at Children's

Hospital here and we can't get in until December 23rd.

> >

> > At this point, my husband and I are wanting to move forward on the helmet--

it would be the dead of winter and with her age it would be over and done before

the spring gets here. That's the selfish parts of us-- wanting it over in the

wintertime to avoid too much to deal with in public. It's terrible, I know.

> >

> > I'm riddled with guilt. How could I have not noticed FOR MONTHS that she

favored one side and there was a flat spot coming? It honestly seems like it

just appeared one day, but I know that's not truly the case.

> >

> > How does everyone deal with the guilt, if you experience/experienced it? I

know it's not something that I intentionally did, but it doesn't discount the

incredible weight on my shoulders.

> >

> > Thanks in advance.

> > Tracey

> >

>

[Guest guest]

I feel exactly the same. Some days, I'd be happy to just let 's head be as it is for the rest of her life. At other times, I start panicking because we are running out of time to get improvements.

Some of it might be my mood. It's also how we fix her hair. But, some of it might be real differences. The theory behind CST is that the bones in the head can shift and change. Our CST therapist says that she can feel movement in 's head while she works on her. That movement should continue for a little while after our appointment. I believe that the movement is ever so slight, but it might be enough for us to see differences at various points. I just found out that there has been more movement on the side where her bump decreased. I hadn't mentioned this until the appointment on Monday and that's when I found out that this is what is going on. It was written in her progress report that gets submitted to the insurance and I was given a copy of it. The progress report also wrote that she had "mild" flattening. This confirms my feeling that her head really is only mild, even though the old system of numbers would say differently.

I feel the worst about her head when I compare it to her brother's head or when her hair is wet. she looks the best in two pig tails. She also definately looks better in bangs because it creates an illusion of a longer head. What I hate is that we have to be creative in order for her head to look good. I would really like her to be able to just do whatever she wants to her hair.

We do not go back for another CST appointment for two months this time. The other options was to just not go back. Our therapist feels that her head is moving fairly well, her head looks pretty good, and the chances for more change are not high. That's why she was pushing to stop. But, she could tell that I was hesitant so she agreed to another appointment in two months to see how things are going. I think that part of the concern is that there are no other gross motor concerns at this point. They are having a hard time justifying to the insurance the purpose of the appointments. When we started, there were range of motion, W-sitting, and core muscle weaknesses that were written about and worked on (in addition to the CST) during the appointments. The insurance approved weekly appointments at that point.

I've been thinking about consulting with someone who can feel her head to see the status of her sutures. Perhaps a D.O - can they do this? I don't want to go do a real head scan just to find out. That wouldn't make any sense. Anyway, if her sutures are still allowing for more movement, then I definately want to continue treatment for a little while longer. Perhaps it would make sense to find someone else who is willing to keep going. Does anyone have any suggestions for the Baltimore area? I'm even willing to travel an hour or so for someone good.

, mom to , 27 months

STARband grad May 2009

Chiro and CST

land

Re: Re: Referred to STARBand & consumed by guilt

Yes, there are good and bad days for me too! I've seen other people write about this too and even for older plagio babies.Maybe, their head shapes do really change. For us some other factors are 's hair style, the angle I look at him, and my mood.Best,Kathy, mom to , 18 monthstandtc wrote:

I'd like to thank everyone for your very kind responses. The guilt has been just more than I ever imagined and every time I look at her sweet face it just breaks my heart that I didn't notice her preference to one side.Before I think I'm losing my mind, did anyone, before banding, think that their child's head shape looked round one day, then just kinda flattened the next, back to round the next and then terribly flat the next, and so on and so on?On Friday, my husband and I swear her head was almost totally round for the entire day. We were absolutely elated, thinking maybe it just 'popped.' But, the elation was short-lived, as it was back to kinda flattened on Sat/Sun and then seemed to change shape throughout today (good one hour and then flattened a few later).Again, the girls will be 5 months on the 19th, so I know their heads are still soft and growing, but this is VERY strange.And, for the excellent suggestion to try to get on a cancellation list in advance of our 23rd appt, the Hospital unfortunately doesn't have one...grrrr!Thanks in advance.Tracey>> Greetings--I've followed along for the past month or so since we noticed a flat spot behind the right ear on one of our twin girls, now 4 months old.> > We took her to the ped back when we noticed and he said there was nothing to worry about and not to worry. He suggested torticollis and we started exercises, as much as possible. Fast forward to their 4 month visit the other week and I pressured the ped into a referral to a plastic surgeon (there are no specific banding centers here in Atlanta).> > Well, today the ps said our little lady has a moderate case of plagio-- even saying on a scale of 1 to 10 that it would be a 6 or 7. Honestly, we were not prepared for that type of result-- naively, we thought the ps would reiterate the ped in saying that we're over-reacting and such.> > The ps was kind, but very vague. He said he would support our decision to get a helmet or would also support the 'wait and see' approach.> > He gave a script to have measurements taken for STARBand at Children's Hospital here and we can't get in until December 23rd.> > At this point, my husband and I are wanting to move forward on the helmet-- it would be the dead of winter and with her age it would be over and done before the spring gets here. That's the selfish parts of us-- wanting it over in the wintertime to avoid too much to deal with in public. It's terrible, I know.> > I'm riddled with guilt. How could I have not noticed FOR MONTHS that she favored one side and there was a flat spot coming? It honestly seems like it just appeared one day, but I know that's not truly the case.> > How does everyone deal with the guilt, if you experience/experienced it? I know it's not something that I intentionally did, but it doesn't discount the incredible weight on my shoulders.> > Thanks in advance.> Tracey>