new diagnosis...now what?

[Guest guest]

Missy,

Welcome to the group!!! Sorry I can't help you with the medical terminology,

but I think we have a few nurses lurking.......I hope someone can shed some

light on this for you- but don't hesitate to ask the Doc to lay it out in

plain english- remember- they are working for you!

I tend to think that the head shape growing in the wrong direction, makes it

continue to grow that way unless there is a corrective device to guide it

back to where it should be. Now, some have had VERY good success with

repositioning, but I feel severity may be the issue here and if there is

something designed to do the job, why not use it to your advantage while

there is ample time to do so. But again, it would depend upon the severity

of each case. My son was dx moderate to severe, so even though the ped said

to wait it out, we are so glad we demanded that referral and are pleased with

the outcome. On the other hand, my friend's child had a severe flat back and

they decided not to go with the band, and they have serious regrets as there

has not been any growth outward, only upward, ever since.

As for the band being barbaric, I can't imagine why Doctors would even

comment on something they are unfamiliar with and unsure about its effects

and daily life. My best source of information came from parents here that

were dealing with my situation, and I mean, almost verbatim, to the point

that I valued each person here for their input more than I ever did my

Doctor. These parents have walked in your shoes, have been told the same

things, and have had the same tug at their heart that you are on what to

do??? Me too! My son never had a problem wearing the band, and it was on no

less than 21 hours a day (its supposed to be 23, but sometimes we would have

it off longer for home pt and massage). I wish these Docs would get a clue-

your best defense is to educate yourself and go to your Doctors prepared with

answers to their comments. You will do yourself and your child a huge favor

by educating yourself and going with your gut reaction to this. Please keep

us posted and if I can help you in anyway, please let me now!

' Mom (DOC grad)

[Guest guest]

My 8 month old daughter, Madilyn, was " diagnosed "

today with moderate plagio. I was not the least bit

surprised. Her ears are out of alignment and the

right side of the back of her head is flat. Her right

cheek protrudes and the right side of her forehead

protrudes (but less than the cheek). The reason I put

the word diagnosed in parenthesis is because it seemed

like it was not so much diagnosed, but rather, " she

doesn't have cranio " ...so this is what she has. (Maybe

I'm being a little harsh on the doc). The Neurologist

went on and on about the problems assoc. with Cranio

and so in effect I felt " cut off at the knees " for

feeling that " mere plagio " was anything to worry

about. She said she's worked where helmets were used

and the results b/t helmet use kids and " nature take

it's course " kids was no different. I could go on and

on about my worries and concerns, but won't...yet.

On her CT scan it showed the Lamboid sutures way

out of alignment and the radiologist's findings are as

follows: " Near their apex, there is cupping and

ridging of the lamboid sutures. More inferiorly the

lamboid sutures are patent. The high lamboid cupping

and ridging may reflect fibrous synostosis " . My

foremost questions is this: Is this really nothing to

worry about? The doc indicated that this may actually

show the beginnings of her head " popping out " , is this

possible?

Second question: Does anyone out there think

that letting nature take it's course really allows the

head to correct intself enough to not be " abnormal " ?

I feel not doing anything is a huge gamble. The doc

told me straight out that her head would never be

round, but that her hair would grow to cover it. (So,

is this sexist...little girls get overlooked b/c we

assume they will grow out their hair and little boys

get treatment b/c they will automatically have short

hair?...I'm being a bit sarcastic)

Third question: Are the helmets really

" barbaric " as I have been told now by two doctors?

Can someone who has hada plagio child that went

through helmet therapy respond to this?

Would anyone recommend a second neurological

opinion? I am trying very hard to NOT look for

problems where there aren't any, but also don't want

to overlook something just b/c I am hoping to not

appear insistant on certain diagnosis and plan of

action.

Lastly, does anyone out there struggle with guilty

feelings? I feel like I did this to her by placing

her on her back or not rotating her positions. I

didn't know...

Missy

Texas

[Guest guest]

Hi Missy & welcome to our group!

Let me try to answer your questions below your question

On her CT scan it showed the Lamboid sutures way

> out of alignment and the radiologist's findings are as

> follows: " Near their apex, there is cupping and

> ridging of the lamboid sutures. More inferiorly the

> lamboid sutures are patent. The high lamboid cupping

> and ridging may reflect fibrous synostosis " . My

> foremost questions is this: Is this really nothing to

> worry about? The doc indicated that this may actually

> show the beginnings of her head " popping out " , is this

> possible?

A) To be honest, all that medical terminology really confuses me, but

it is possible that Madilyn's head has " popped out " or rounded out on

it's own! That would be great news. This could be becuz Madilyn may

be spending less time on her back if she is able to sit up on her

own, sits in the exesaucer, etc.. So it is definitely possible for

it to be improving on her own.

> Second question: Does anyone out there think

> that letting nature take it's course really allows the

> head to correct intself enough to not be " abnormal " ?

> I feel not doing anything is a huge gamble. The doc

> told me straight out that her head would never be

> round, but that her hair would grow to cover it. (So,

> is this sexist...little girls get overlooked b/c we

> assume they will grow out their hair and little boys

> get treatment b/c they will automatically have short

> hair?...I'm being a bit sarcastic)

A) Even parents of boys have been given the good ol " hair will cover

it " speel, so I wouldn't necessarily say your Dr. was being sexist.

Whether or not nature will correct your daughter's flatness is a

question SO many of us wish we knew the answer to. If we only had

that crystal ball! I can tell you though, my daughter graduated from

her DOCband at age 15.5 mos, this was 9 mos ago. Since then, I

haven't noticed any additional improvement w/o the help of her band,

she is 24 mos old so I don't think we'll get any more improvement in

time.

> Third question: Are the helmets really

> " barbaric " as I have been told now by two doctors?

> Can someone who has hada plagio child that went

> through helmet therapy respond to this?

A) I don't mean to laugh, but to call helmets/bands barbaric is

absolutely ridiculous!!! My daughter wore 2 bands for a total of 8

mos., Abby couldn't have cared less! She didn't mind her bands one

bit! Abby is just as smart as any other 2 yr old and is NO worse off

becuz of the bands. She is definitely better off!! Abby's DOCband

improved her severe plagio a ton! I couldn't be any happier with

deciding to get Abby into a band to help her plagio! It's a decision

I absolutely will never ever regret

> Would anyone recommend a second neurological

> opinion? I am trying very hard to NOT look for

> problems where there aren't any, but also don't want

> to overlook something just b/c I am hoping to not

> appear insistant on certain diagnosis and plan of

> action.

A) A 2nd opinion wouldn't help any for sure! Why not, especially

you sound like you didn't like this specialist at all. Where abouts

in TX do you live? There is a Cranial Technology office in TX they

are makers of the DOCband and offer free evaluations. They would give

you an honest opinion of Madilyn's head shape. Check out their

webpage at www.cranialtech.net

> Lastly, does anyone out there struggle with guilty

> feelings? I feel like I did this to her by placing

> her on her back or not rotating her positions. I

> didn't know...

A) Ah yes, I just replied to a new DOCband baby's mom about this

earlier today. It's definitely NOT your fault, but you can't help

but to feel guilty! DON'T though! Really, some babies are more

prone to plagio than others for unknown reasons. Don't feel guilty!

Welcome again to the group! We look forward to getting to know you

more. You might also want to look at www.plagiocephaly.org/support

webpage for other good plagio information.

Debbie Abby's mom 3/1/00 DOCGrad 6/22/01

MI

>

>

[Guest guest]

Hi Missy

Every single one of us will say we went through the guilty feelings. I

understand we have all been there. My second son dylan was diagnosed with

severe plagio. I was given the usual garbage " it will round out in time " ect

ect. I was not happy with that but we do put our lives and our childrens in

the so called experts. I moved to canada and was referred and Dylan started

the DOCband at aged 8 months he is now 16 months and is in a second DOCband

( i knew he was going to have 2 bands from the start. For Dylan the DOCband

has been amazing!! The back of Dylan's hair has rounded nicely and his

facial assymmetry has gone, even his ears had moved as well. Dylan still

has a little bossing on his forehead and i am waiting for his ears to moved

back a bit more.

Dylan adjusted well into the DOCband and i am sure other moms will says the

same i am so used to him in his DOCband i forget hes got it on. I have had

no problems with the DOCband apart from the first day where we had a few red

spots and once the OT shaved the helmet it was fine. At 8months old your

daughter would get good correction as she has got some growth spurts to do.

I wish you the very best of luck and please keep us posted.

Best wishes

Kerry - Marcus (3)Dylan in second DOCband (1)

Calgary,AB

>From: " mcole95 " <mcole95@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: new diagnosis...now what?

>Date: Tue, 28 May 2002 20:23:13 -0000

>

>My 8 month old daughter, Madilyn, was " diagnosed "

>today with moderate plagio. I was not the least bit

>surprised. Her ears are out of alignment and the

>right side of the back of her head is flat. Her right

>cheek protrudes and the right side of her forehead

>protrudes (but less than the cheek). The reason I put

>the word diagnosed in parenthesis is because it seemed

>like it was not so much diagnosed, but rather, " she

>doesn't have cranio " ...so this is what she has. (Maybe

>I'm being a little harsh on the doc). The Neurologist

>went on and on about the problems assoc. with Cranio

>and so in effect I felt " cut off at the knees " for

>feeling that " mere plagio " was anything to worry

>about. She said she's worked where helmets were used

>and the results b/t helmet use kids and " nature take

>it's course " kids was no different. I could go on and

>on about my worries and concerns, but won't...yet.

> On her CT scan it showed the Lamboid sutures way

>out of alignment and the radiologist's findings are as

>follows: " Near their apex, there is cupping and

>ridging of the lamboid sutures. More inferiorly the

>lamboid sutures are patent. The high lamboid cupping

>and ridging may reflect fibrous synostosis " . My

>foremost questions is this: Is this really nothing to

>worry about? The doc indicated that this may actually

>show the beginnings of her head " popping out " , is this

>possible?

> Second question: Does anyone out there think

>that letting nature take it's course really allows the

>head to correct intself enough to not be " abnormal " ?

>I feel not doing anything is a huge gamble. The doc

>told me straight out that her head would never be

>round, but that her hair would grow to cover it. (So,

>is this sexist...little girls get overlooked b/c we

>assume they will grow out their hair and little boys

>get treatment b/c they will automatically have short

>hair?...I'm being a bit sarcastic)

> Third question: Are the helmets really

> " barbaric " as I have been told now by two doctors?

>Can someone who has hada plagio child that went

>through helmet therapy respond to this?

> Would anyone recommend a second neurological

>opinion? I am trying very hard to NOT look for

>problems where there aren't any, but also don't want

>to overlook something just b/c I am hoping to not

>appear insistant on certain diagnosis and plan of

>action.

> Lastly, does anyone out there struggle with guilty

>feelings? I feel like I did this to her by placing

>her on her back or not rotating her positions. I

>didn't know...

>

>Missy

>Texas

>

>

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

--Hi Missy!...here is my opinion(not to say other's opinions are

wrong!) I don't feel it is barberic at all to use the band.

Repositioning usually works best before 6 months. I would rather have

la my daughter be banded for 4 or so months...then have an odd

shaped head and possibly other problems the rest of her life!! My

doctor told us the same irritating things...let hair grow long yada

yada yada......That is why she started the Doc band so late(11

months) I am furious that I was not made aware of plagiocephaly

before by the doctor when I had repeatedly asked about her head at

check-ups!! la was born this was due to being a twin and the

one on bottom so no I don't feel guilt but I don't feel you should

either! If doctors made Parents more aware of this,we wouldn't see so

many cases!!!!!!! Use you heart and you own opinions on if you feel

she needs the band. If her head does not round out on it's own will

you be ok with it staying the way it is now? If so then there is no

need to band. But if you think it will bother you then I would at

least try the Doc band. My daughter has only been in hers for a

little over a week and we are already starting to see slight changes.

She is 11 months so growth is slower and we did not expect to see

changes so soon!!! As far as how she looks in her band, I think she

looks adorable so it is not upsetting to me at all. We do have people

stare but why wouldn't they look at a baby with a big white thing on

their head.Some ask what happened and I tell them...this does not

bother me at all. I would rather have them stare while she is a baby

being treated then as an adult with an odd shaped head. Good luck

with whatever you choose to do!!!! Hugs~ & la

- In Plagiocephaly@y..., " mcole95 " <mcole95@y...> wrote:

> My 8 month old daughter, Madilyn, was " diagnosed "

> today with moderate plagio. I was not the least bit

> surprised. Her ears are out of alignment and the

> right side of the back of her head is flat. Her right

> cheek protrudes and the right side of her forehead

> protrudes (but less than the cheek). The reason I put

> the word diagnosed in parenthesis is because it seemed

> like it was not so much diagnosed, but rather, " she

> doesn't have cranio " ...so this is what she has. (Maybe

> I'm being a little harsh on the doc). The Neurologist

> went on and on about the problems assoc. with Cranio

> and so in effect I felt " cut off at the knees " for

> feeling that " mere plagio " was anything to worry

> about. She said she's worked where helmets were used

> and the results b/t helmet use kids and " nature take

> it's course " kids was no different. I could go on and

> on about my worries and concerns, but won't...yet.

> On her CT scan it showed the Lamboid sutures way

> out of alignment and the radiologist's findings are as

> follows: " Near their apex, there is cupping and

> ridging of the lamboid sutures. More inferiorly the

> lamboid sutures are patent. The high lamboid cupping

> and ridging may reflect fibrous synostosis " . My

> foremost questions is this: Is this really nothing to

> worry about? The doc indicated that this may actually

> show the beginnings of her head " popping out " , is this

> possible?

> Second question: Does anyone out there think

> that letting nature take it's course really allows the

> head to correct intself enough to not be " abnormal " ?

> I feel not doing anything is a huge gamble. The doc

> told me straight out that her head would never be

> round, but that her hair would grow to cover it. (So,

> is this sexist...little girls get overlooked b/c we

> assume they will grow out their hair and little boys

> get treatment b/c they will automatically have short

> hair?...I'm being a bit sarcastic)

> Third question: Are the helmets really

> " barbaric " as I have been told now by two doctors?

> Can someone who has hada plagio child that went

> through helmet therapy respond to this?

> Would anyone recommend a second neurological

> opinion? I am trying very hard to NOT look for

> problems where there aren't any, but also don't want

> to overlook something just b/c I am hoping to not

> appear insistant on certain diagnosis and plan of

> action.

> Lastly, does anyone out there struggle with guilty

> feelings? I feel like I did this to her by placing

> her on her back or not rotating her positions. I

> didn't know...

>

> Missy

> Texas

[Guest guest]

Missy,

Barbaric? How absurd! The DOC band is dynamic, light as a feather

and my daughter Jane did not bat an eyelash from the moment we put it

on. She slept through the first night like it was not even there.

Does this seem barbaric to you? It is open on the top and we

decorated it with stickers. She looked very cute in it actually!

Most importatnly it WORKS! We saw it working as early as two weeks,

and have reached almost full correction in 12 weeks. (started at 8

months old). It's a great crash helmet as well for those just

learning to cruise!

We also got the runaround from Doctors and specialists. But it came

down to the fact that I wanted to look back and say " I did

everything I could for her! " . I never wanted to look back and wonder.

Good luck! You have come to a great place to gather lots of

information!

and Jane

[Guest guest]

Hi Missy,

I am new to the group also and am in the exact same

situation as you. My baby is 6 1/2 months old. I am

somewhat skeptical about what the pediatricians say.

If my pediatrician was really experienced she would

have offered me better ways to reposition Kale's head

rather than just turning it. (I have been doing that

for 3 months with little success.) I took a look at

the section on repositioning techniques at

www.plagiocephaly.org and the one with the two rolls

is working well for me though I've only been doing it

for 3 days. I am only 3 days new to this group.

About the whole guilt thing. I know exactly what you

mean. But now, something can be done. I'm thinking

that the helmet/band thing isn't so bad. If Madilyn

or my baby Kale get them, then they will be wearing

the devices for such a short period of time, compared

to the rest of their lives. People get braces to

straighten their teeth. There used to be a stigma

attached to that but now it is as common as a blue

jay. I'm thinking now that we would be forerunners in

the same way. Pioneers. As I mentioned, I am exactly

where you are right now. My appointment to see the

specialist is still 3 wks away. In fact, I'm not even

sure whether Kale in fact has plagio or cranio. All I

know is that his head has been flat on the side for

months. I only learned the term plagiocephaly 3wks

ago when I read an article in the Toronto Star

newspaper. Your choice will be a good one, whatever

you decide. I just keep asking myself, all these

people have gotten the helmet. What exactly am I

afraid of?

(Kale's mom)

--- mcole95 <mcole95@...> wrote:

> My 8 month old daughter, Madilyn, was " diagnosed "

> today with moderate plagio. I was not the least bit

> surprised. Her ears are out of alignment and the

> right side of the back of her head is flat. Her

> right

> cheek protrudes and the right side of her forehead

> protrudes (but less than the cheek). The reason I

> put

> the word diagnosed in parenthesis is because it

> seemed

> like it was not so much diagnosed, but rather, " she

> doesn't have cranio " ...so this is what she has.

> (Maybe

> I'm being a little harsh on the doc). The

> Neurologist

> went on and on about the problems assoc. with Cranio

> and so in effect I felt " cut off at the knees " for

> feeling that " mere plagio " was anything to worry

> about. She said she's worked where helmets were

> used

> and the results b/t helmet use kids and " nature take

> it's course " kids was no different. I could go on

> and

> on about my worries and concerns, but won't...yet.

> On her CT scan it showed the Lamboid sutures

> way

> out of alignment and the radiologist's findings are

> as

> follows: " Near their apex, there is cupping and

> ridging of the lamboid sutures. More inferiorly the

> lamboid sutures are patent. The high lamboid

> cupping

> and ridging may reflect fibrous synostosis " . My

> foremost questions is this: Is this really nothing

> to

> worry about? The doc indicated that this may

> actually

> show the beginnings of her head " popping out " , is

> this

> possible?

> Second question: Does anyone out there think

> that letting nature take it's course really allows

> the

> head to correct intself enough to not be " abnormal " ?

>

> I feel not doing anything is a huge gamble. The doc

> told me straight out that her head would never be

> round, but that her hair would grow to cover it.

> (So,

> is this sexist...little girls get overlooked b/c we

> assume they will grow out their hair and little boys

> get treatment b/c they will automatically have short

> hair?...I'm being a bit sarcastic)

> Third question: Are the helmets really

> " barbaric " as I have been told now by two doctors?

> Can someone who has hada plagio child that went

> through helmet therapy respond to this?

> Would anyone recommend a second neurological

> opinion? I am trying very hard to NOT look for

> problems where there aren't any, but also don't want

> to overlook something just b/c I am hoping to not

> appear insistant on certain diagnosis and plan of

> action.

> Lastly, does anyone out there struggle with

> guilty

> feelings? I feel like I did this to her by placing

> her on her back or not rotating her positions. I

> didn't know...

>

> Missy

> Texas

>

>

>

>

=====

Lin

mjl@...

__________________________________________________

[Guest guest]

Missy,

Where in Texas are you? We have been going to Cranial Technologies in Dallas, and there is a clinic in Houston (not CT, but they use DOC bands). It might be worth a trip for a free consultation. And they could point you to some specialists that could get the ball rolling.

Gail, Sam and Sara's mom, DOC grads

[Guest guest]

In a message dated 5/28/2002 8:12:22 PM Eastern Daylight Time, dlicano@... writes:

We do have people

stare but why wouldn't they look at a baby with a big white thing on

their head.Some ask what happened and I tell them...this does not

bother me at all. I would rather have them stare while she is a baby

being treated then as an adult with an odd shaped head.

,

Great attitude!! Very good approach- your a great mom!

' Mom

[Guest guest]

Hi Missy and welcome. I just read Debbie's post to you and I think her

answers were very thorough. I don't have much more to add except I think a

helmet or band would/could be very effective in treating your daughter. They

are NOT barbaric and I think you can TOTALLY disregard that comment. My

daughter wore her helmet for 5 + months and never did it cause her even one

moment of unhappiness. I understand the guilty feelings - I had those too.

The good news is that this condition is treatable with no surgery. The fact

that you are working hard to get to the bottom of this now means you are a

conscientious mom who is doing all she can for her baby.

Good luck with whatever decision you come to. A second opinion never hurts!!

Let us know what you decide to do.

Marci (Mom to )

Oklahoma

[Guest guest]

Hi,

I have an 8 month old daughter, also. She was

diagnosed with moderate plagiocephaly at 4 months. We

tried repositioning for about 2 months to see if it

would help, but because she also suffered from

torticollis her head did not improve. At first, my

husband and I thought that plageiocephaly was just a

cosmetic thing and that she would be fine once her

hair grew in. After talking to the physical therapist

and researching this condition online, we found out

that several things may happen, if left untreated

(TMJ, chewing and vision problems, etc.) We felt that

if their was something that could prevent our daughter

from later on having other problems that it was worth

a try. Our daughter has been in the helment for two

months now, and I cannot believe the change in her

head. She has about two months to go and she will be

done with her therapy. The ortodists is very please,

as we are, with her progress. Good luck with you

decision. Keep us posted

Helen and

--- mcole95 <mcole95@...> wrote:

> My 8 month old daughter, Madilyn, was " diagnosed "

> today with moderate plagio. I was not the least bit

> surprised. Her ears are out of alignment and the

> right side of the back of her head is flat. Her

> right

> cheek protrudes and the right side of her forehead

> protrudes (but less than the cheek). The reason I

> put

> the word diagnosed in parenthesis is because it

> seemed

> like it was not so much diagnosed, but rather, " she

> doesn't have cranio " ...so this is what she has.

> (Maybe

> I'm being a little harsh on the doc). The

> Neurologist

> went on and on about the problems assoc. with Cranio

> and so in effect I felt " cut off at the knees " for

> feeling that " mere plagio " was anything to worry

> about. She said she's worked where helmets were

> used

> and the results b/t helmet use kids and " nature take

> it's course " kids was no different. I could go on

> and

> on about my worries and concerns, but won't...yet.

> On her CT scan it showed the Lamboid sutures

> way

> out of alignment and the radiologist's findings are

> as

> follows: " Near their apex, there is cupping and

> ridging of the lamboid sutures. More inferiorly the

> lamboid sutures are patent. The high lamboid

> cupping

> and ridging may reflect fibrous synostosis " . My

> foremost questions is this: Is this really nothing

> to

> worry about? The doc indicated that this may

> actually

> show the beginnings of her head " popping out " , is

> this

> possible?

> Second question: Does anyone out there think

> that letting nature take it's course really allows

> the

> head to correct intself enough to not be " abnormal " ?

>

> I feel not doing anything is a huge gamble. The doc

> told me straight out that her head would never be

> round, but that her hair would grow to cover it.

> (So,

> is this sexist...little girls get overlooked b/c we

> assume they will grow out their hair and little boys

> get treatment b/c they will automatically have short

> hair?...I'm being a bit sarcastic)

> Third question: Are the helmets really

> " barbaric " as I have been told now by two doctors?

> Can someone who has hada plagio child that went

> through helmet therapy respond to this?

> Would anyone recommend a second neurological

> opinion? I am trying very hard to NOT look for

> problems where there aren't any, but also don't want

> to overlook something just b/c I am hoping to not

> appear insistant on certain diagnosis and plan of

> action.

> Lastly, does anyone out there struggle with

> guilty

> feelings? I feel like I did this to her by placing

> her on her back or not rotating her positions. I

> didn't know...

>

> Missy

> Texas

>

>

>

>

__________________________________________________