Re: I still feel awful.

[Guest guest]

Hi Dorothy & welcome!

If you are still uneasy about your daughter's headshape and would

feel better IF you banded her, there's still plenty of time for a

band to benefit her. Where are you located?

My daughter did wear a band from 11.5 mos - 15.5 mos of age and

rec'd good correction of her severe plagio. However, she still had

remaining flatness, is now 4 yrs of age & unfortunately, her

headshape did not improve on it's own after the band

PLEASE don't beat yourself up about this for another second though.

Debbie

> Hi everyone. My name is Dorothy and I have been visiting this

site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round

out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her

therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was

that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so

mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Hi Dorothy,

Welcome to the group. I'm sorry about the situation you're in. At

eleven months old Paige is not too old to benefit from a band

though. Do you agree w/the diagnosis that it's mild? Where do you

live? Nobody can tell you for sure if Paige's head will round out

any more, and for me the facial assym was a bigger concern. You

really need to ask yourself if you would be happy with Pagie's head

if this is the shape it remains, and if you aren't than I would

suggest looking into treatment. Do you have any pictures you could

post? Just b/c they can't " guarantee " you any change, doesn't mean

you shouldn't try IF you want to. If you're happy than don't, but

if you're not happy you could always regret not pursuing it. What

type of band does this ortho use? I just sense you sound so upset

about this, and Paige really isn't too old for treatment. My

daughter got her third DOCband at 15 mos and has already seen

progress in 3 weeks. I knew she was at the older end to see change,

but I also knew I was unhappy enough with her headshape that it was

worth trying so that at least I wouldn't have any regrets. Please

keep us updated.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi everyone. My name is Dorothy and I have been visiting this

site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round

out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her

therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was

that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so

mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Hi Dorothy,

I'm sorry that you received the same " song and dance " that many of

us had too. My son's doctors ignored my concerns as well. It isn't

too late to band Paige if that is what you really want. Where are

you located? Maybe another member could offer some advice in your

area.

Natasha

> Hi everyone. My name is Dorothy and I have been visiting this

site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round

out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her

therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was

that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so

mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Dorothy,

My Naomi also has a LOT of hair. Which is why it was so hard for us to tell if she had a flat spot. I know how deceiving that hair can get and I feel you when you say it kills you everytime you give her a bath. I get that same feeling. I finally took photos of her head, wet and flat against her head and it's so much more noticeable. Maybe doing that and bringing the photos to the dr. will help? All I can say is, go with your gut. I thought there was a problem and have had it checked out, now we're getting treatment and it's such a relief!

Good Luck,

sash, mom to 5 month old Naomi

> Hi everyone. My name is Dorothy and I have been visiting this site > for a few weeks now, getting the nerve up to write. My daughter > Paige is eleven months old and was born with tort. At each doctor's > visit I asked about her flat spot and was told it would round out. > She also went to physical therapy for the tort and I was told it > would round out. I, being a new mom, believed them. Her therapist > said once she sat up and played all day, I would see improvement. > Paige has a lot, and I mean a lot of hair. I think this is the > primary reason both her doctor and therapist didn't see the plagio > the way I did. I evantually became proactive and got us in to a > cranial specialist and an orthotist. Their recommendation was that

> her case is too mild. No one but me can tell that her ears are a > little off or that her right cheek is a little bigger. The orthotist > said she couldn't guarantee any change because her case is so mild. > (She's also the only orthotist in the area. But, I have a friend who > knows her and said she is very honest and she can be trusted). I > made peace with that and was ok with it. But,just recently I've been > upset again. Everytime she takes a bath I see the "flat spot". > every time I see a round headed baby, I can't upset. My mother > swears it has rounded out from when she was 4/5 months old. She's > probably right, I just don't see it because I'm with her every day. > I guess I'm wondering if anyone else made the choice not to band and > if they saw improvments. It just eats me up inside that she

has this > flat spot.For more plagio info

[Guest guest]

Hi Dorothy and welcome to our group. My son, Ignacio, also had tort

and right side plagio but his case was moderate-severe. We decided

to band. Even though you asked for comments of parents that decided

not to band, I was moved to answer your post.

In Ignacio's case, we are almost at the end of treatment (only one

more week to go) and I can still see a lot of flatness. Everybody

keeps telling me that the improvement has been awesome and I can

tell it has improved but, as I guess all parents think, I was

counting on a perfect round head even though the doctor told us

since day one that this will not be the case. I believe that since

Im home all day with my twins, I notice the flatness a lot more than

everybody else. Also, the doctor told me that the part of the head

that is on top on the ear trvelling to the back of the head is the

last part to round out and that the process will continue until the

baby reaches the age of two.

Most probably your daughter is still rounding out. Since her case

is mild I think that the changes are not as evident as in babies

whose cases are moderate or severe since the are that they have to

round is smaller. Regarding her assymetry, everyone has some

assymetry in their faces and this is not cause by plagio or tort.

Ive read that even the most friendly plagio insurance consider an

assymetry of 4mm or less as normal.

Finally, as first time parents we trust on what every doctor tells

us is the best for our babies. So you shouldnt blame yourself for

nothing... You'll see that, in time, she will look better and

better.

Annie

Mom to twins, Ignacio (DOC 12/2/03 & 2/17/04) &

San , PR

> Hi everyone. My name is Dorothy and I have been visiting this

site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round

out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her

therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was

that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so

mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Hi Dory:

I really feel for you in your situation. Remember it is completely

normal for us mama-bears to want to protect our children and I think

this type of experience can feel like a " threat " in the old " fight-or-

flight " reaction part of the brain. In my non-medical opinion, this

is why we moms and dads have such a tough time with tort and plagio

(and other types of non-life-threatening but potentially life-

altering types of challenges.)

So, first of all I just want to acknowledge that your feelings are

normal, and if you can too it can help you cope.

Yes, you can still band, if that's what you want. I would recommend

(for what it's worth - after all it is up to YOU as to what you think

will work for you) the DOC band - that is the band my daughter wore.

We turned down the helmet in town and drove to Madison WI from St.

, MN (5 hours one way) for the DOC band. It was worth every

mile, every hotel stay and every penny. If a DOC band is not

available within driving distance, there is a service called Angel

Flight or similar that flies kids and their parent for appointments.

Check with your nearest DOC band center to see if one is available.

I would recommend also that you consult a Cranial Osteopath and just

see what she/he has to say. Cranio-Sacral therapy is another option -

check out Upledger.com to find a qualified person in your area.

Because of my experience with my daughter, Rhiannon (now 28 months),

I am becoming a craniosacral therapist to help others in our

situation - that is how much I believe in this type of therapy. The

Upledger website has alot of information regarding headshapes,

infants with mishapen heads, etc. and can help in your planning and

decision-making.

Lastly, I just want to let you know that this crisis WILL pass.

There will be a day when you look back and can hardly believe that

it's all over, that you don't even think about this situation. You

will get there, you will do great, and all will be well. In the

meantime, keep your chin up, gather all the info you can (call helmet

places, osteopaths, chiropractors, etc. and ask for info and

opinions) and move from here. Don't waste time in past thinking (if

only...) I did alot of that and as I look back I see that is was

non-productive and only added to my anxiety.

Best wishes for a full recovery for your sweet child!!

, Rhiannon's mom

> Hi everyone. My name is Dorothy and I have been visiting this site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Hi,

I did not helmet or band my daughter, but did choose to aggressively

reposition her from 5 to about 13 months. After repo, we have seen

a slight improvement in the length of her head, but we haven't seen

any additional rounding.

If you are still getting that lump in your throat when you see your

daughter's wet head at bathtime, I recommend you seek a second

opinion with another orthotist regarding assessment of severity and

potential degree of correction that could be achieved. Even if your

ortho's opinion is seconded by another ortho/facility, the

assessment that there is " no guarantee of change " doesn't mean you

shouldn't give it a try to see if you can get some correction! What

type of product does the ortho you consulted use? Active bands can

offer good correction in older babies, over one year of age, and can

have a broader age range for treatment. How mild is your daughter?

From your description, it sounds as if she has some ear misalignment

and cheek bossing in addition to a flat area.

Take care,

Christie (Mom to Repo'd Remy)

> Hi everyone. My name is Dorothy and I have been visiting this

site

> for a few weeks now, getting the nerve up to write. My daughter

> Paige is eleven months old and was born with tort. At each

doctor's

> visit I asked about her flat spot and was told it would round

out.

> She also went to physical therapy for the tort and I was told it

> would round out. I, being a new mom, believed them. Her

therapist

> said once she sat up and played all day, I would see improvement.

> Paige has a lot, and I mean a lot of hair. I think this is the

> primary reason both her doctor and therapist didn't see the plagio

> the way I did. I evantually became proactive and got us in to a

> cranial specialist and an orthotist. Their recommendation was

that

> her case is too mild. No one but me can tell that her ears are a

> little off or that her right cheek is a little bigger. The

orthotist

> said she couldn't guarantee any change because her case is so

mild.

> (She's also the only orthotist in the area. But, I have a friend

who

> knows her and said she is very honest and she can be trusted). I

> made peace with that and was ok with it. But,just recently I've

been

> upset again. Everytime she takes a bath I see the " flat spot " .

> every time I see a round headed baby, I can't upset. My mother

> swears it has rounded out from when she was 4/5 months old. She's

> probably right, I just don't see it because I'm with her every

day.

> I guess I'm wondering if anyone else made the choice not to band

and

> if they saw improvments. It just eats me up inside that she has

this

> flat spot.

[Guest guest]

Hi Christie, thanks for replying. I really do think Paige's plagio is pretty mild, yet I see it everyday, so I obsess over it. Can you tell me what kind ore repositioning you did for your daughter. I am still flipping Paige over when she sleeps, but it is so hard to see improvement when you see the head every single day. I think bathtime bothers me because she has so much hair and when it is wet it lays a funny way and makes it more obvious. But, when I shampoo it and pile it all on top of her head, her plagio is hardly noticeable. Anyways, thanks for any help you can give.

Dorothy, mom to Paigeredlocks2003 <redlocks@...> wrote:

Hi,I did not helmet or band my daughter, but did choose to aggressively reposition her from 5 to about 13 months. After repo, we have seen a slight improvement in the length of her head, but we haven't seen any additional rounding.If you are still getting that lump in your throat when you see your daughter's wet head at bathtime, I recommend you seek a second opinion with another orthotist regarding assessment of severity and potential degree of correction that could be achieved. Even if your ortho's opinion is seconded by another ortho/facility, the assessment that there is "no guarantee of change" doesn't mean you shouldn't give it a try to see if you can get some correction! What type of product does the ortho you consulted use? Active bands can offer good correction in older babies, over one

year of age, and can have a broader age range for treatment. How mild is your daughter? From your description, it sounds as if she has some ear misalignment and cheek bossing in addition to a flat area. Take care,Christie (Mom to Repo'd Remy)> Hi everyone. My name is Dorothy and I have been visiting this site > for a few weeks now, getting the nerve up to write. My daughter > Paige is eleven months old and was born with tort. At each doctor's > visit I asked about her flat spot and was told it would round out. > She also went to physical therapy for the tort and I was told it > would round out. I, being a new mom, believed them. Her therapist > said once she sat up and played all day, I would see improvement. > Paige has a lot, and

I mean a lot of hair. I think this is the > primary reason both her doctor and therapist didn't see the plagio > the way I did. I evantually became proactive and got us in to a > cranial specialist and an orthotist. Their recommendation was that > her case is too mild. No one but me can tell that her ears are a > little off or that her right cheek is a little bigger. The orthotist > said she couldn't guarantee any change because her case is so mild. > (She's also the only orthotist in the area. But, I have a friend who > knows her and said she is very honest and she can be trusted). I > made peace with that and was ok with it. But,just recently I've been > upset again. Everytime she takes a bath I see the "flat spot". > every time I see a round headed baby, I can't upset. My mother > swears it has rounded out

from when she was 4/5 months old. She's > probably right, I just don't see it because I'm with her every day. > I guess I'm wondering if anyone else made the choice not to band and > if they saw improvments. It just eats me up inside that she has this > flat spot.For more plagio info