Re: wife disagrees; says no to helmet for son

[Guest guest]

So - you have two obstacles - one is your wife and one is no script. You may be able to get the script if you can find a pro band doctor. The neurosurgeon will probably not give you one because most of them are not band friendly. Try a database search to see if there are any local doctors that prescribed bands to other babies on this board and schedule an appointment ASAP. It may mean going without insurance coverage for it, etc., but if you really want the script, you could probably find someone, even if you need to travel a little to do it.

In terms of your wife, that's not so easy. Perhaps she could be convinced by the CT people. I don't know - maybe others will have ideas for you.

, mom to , 25.5 months

STARband grad May 2009

Chiro and CST

land

wife disagrees; says no to helmet for son

Hello,I recently joined this group, and this is my first post. In short: I believe my son needs a reshaping helmet. His mother disagrees.Oliver is 13 months old. He presented frank breech, and was born in September 2008 via C-section.We did not notice until he was a month old that his head always turned to his right.This caused torticollis on the right side of his neck, which in turn caused his positional plagiocephaly. His forehead bulges on his right side, and his head is long and narrow. (To be clear: I do not want to change the long and narrow shape. I simply want to eliminate the forehead bulge as much as possible.)No one even warned us of the potential (and preventable) problem of positional plagiocephaly.Not the OBGYN.Not our first family doctor (who was a GP).And not our current pediatrician.For Oliver's first 6 months we tried repositioning, and only because of my insistence and diligence. The repositioning gave some improvement, but the forehead bulge is still noticeable from above.Since the end of those first 6 months I have tried — unsuccessfully — to convince my wife that Oliver needs a reshaping helmet, but she will not even CONSIDER it. She thinks I'm making all of this up, that nothing is wrong, that I need psychotherapy.I eventually persuaded my wife to switch from the GP to our current pediatrician. During his 1-year checkup, I asked for a second opinion. After a quick glance of Oliver's head the pediatrician said she didn't recommend a helmet. She wasn't sure the forehead bulge would go away by itself, but said he was otherwise just fine, with nothing to worry about.At the time I believed I would eventually accept the situation and move on, but I couldn't shake the feeling that Oliver's forehead bulge could be corrected or lessened. So I scheduled an appointment in early November with Cranial Tech near Chicago for an evaluation and hopefully measured for a DOC Band. After reviewing photos of Oliver's head to the managing clinician, she responded:"I would agree with you that there is a significant asymmetry to his head shape. I think it would be a very good idea to come for a consult. Because Oliver is 13 months, it would be difficult to attain perfect symmetry but I think the DOC band would benefit him."In the meantime I scheduled another appointment with our pediatrician to obtain a script that would allow us to get the helmet. (We can't legally or medically proceed without the script.) But instead the doctor lectured me about the unnecessary trauma Oliver would endure by wearing a helmet. And I got a finger pointing.Needless to say, I still strongly disagree and would like a third opinion.The pediatrician said she would refer us to a neurosurgeon at the local Children's Hospital, but she essentially guaranteed that he won't provide a script either.My wife essentially gave me a "told you so", and continues to deny me any help.With each day I become more concerned that the window of opportunity to correct my son's head shape is passing.I feel like have no options left.And it pains me to say that our marriage is in trouble. Deeply.Any advice is most welcome. Thanks so much in advance for your help.*I will try to upload photos for reference.

[Guest guest]

Well it sounds like you have a lot on your plate.  !st I have to ask but have you had marraige problems before this?  The reason I ask is though this is a big deal and people who have problems such as a special need with a child are more likely to have marraige problems this still seems like such a small thing to be having such problems over.  It sounds like there is a huge breakdown in communication.  For something like this that treatment wise would be very short term, you should be able to sit down and have a very serious discussion with neither pointing fingers, blame, or saying I told you so, both should be able to listen very carefully and with their heart to what the other is saying.  I just cannot imagine listening with such an open heart to a spouses deep concern over my own child and not have a very deepfelt desire to look into things and make sure WE were making the right decision.  Money aside, the only other factor involved in the helmet is the time worn.  And since the child wears it 23 hrs a day it is a very short time that you are actually doing something.  It is just during that 1 hr that you wash the childs hair (which one would hope you already do) and wipe out the helmet.  Then every 2 wks there are appts.  All of these things you could do and therefore wouldnt inconvenience her at all.  The rest of the time it is just put it on and forget it.

 

If she was even considering it (which it doesnt sound like she has even thought about it) then maybe the trauma would be her concern as the doctor tried to say.  However, if you read back through this board, it is the very rare child who has any trauma from it and since you are considering the docband, I only recall 2 children on here who have ever had issues with that (I have been on the board over 2 years) and both were an allergy.  the docband is very lightweight, even considerably less than the other bands and it is the one that while offering great results it covers the head the least so therefore kids get used to it very quickly.  My son was not exactly the most laidback baby, he also wasn't a great sleeper and he had very sensitive skin.  Yet when he got the docband put on, he did not cry, he reached for it and pulled on it and was quickly distracted by a toy and never paid attn to it after that even as we put it on and off (more often than some since he was banded in August in SC so a lot of heat so sometimes a lot of wiping b/c of sweat).  The 1st time he slept in it was in the car on the way home ( a 2 hr drive), it took a bit of fussing (which isnt even unusual for him) as he tried to find how it was most comfortable and then he slept until we stopped to eat 30 min later and then fell back asleep for the rest of the drive.  That night he didnt even have any issues with sleep.  He also didn't have any additional ecxema or skin problems while he wore it.  As a matter of fact within a week if he saw it off his head he would grab it and try to put it back on.  Months after he graduated when he saw it he still tried to put it back on.  That does not sound like a child who was very traumatized by it does it?  There are a lot of pictures on his website devoted to his helmet at www.joeysmanicmelon.blogspot.com as well as before and after, including 1 and 2 yr post band pics

On Thu, Oct 22, 2009 at 1:52 AM, deronhusak@... <deronhusak@...> wrote:

 

Hello,I recently joined this group, and this is my first post. In short: I believe my son needs a reshaping helmet. His mother disagrees.Oliver is 13 months old. He presented frank breech, and was born in September 2008 via C-section.

We did not notice until he was a month old that his head always turned to his right.This caused torticollis on the right side of his neck, which in turn caused his positional plagiocephaly. His forehead bulges on his right side, and his head is long and narrow. (To be clear: I do not want to change the long and narrow shape. I simply want to eliminate the forehead bulge as much as possible.)

No one even warned us of the potential (and preventable) problem of positional plagiocephaly.Not the OBGYN.Not our first family doctor (who was a GP).And not our current pediatrician.For Oliver's first 6 months we tried repositioning, and only because of my insistence and diligence. The repositioning gave some improvement, but the forehead bulge is still noticeable from above.

Since the end of those first 6 months I have tried — unsuccessfully — to convince my wife that Oliver needs a reshaping helmet, but she will not even CONSIDER it. She thinks I'm making all of this up, that nothing is wrong, that I need psychotherapy.

I eventually persuaded my wife to switch from the GP to our current pediatrician. During his 1-year checkup, I asked for a second opinion. After a quick glance of Oliver's head the pediatrician said she didn't recommend a helmet. She wasn't sure the forehead bulge would go away by itself, but said he was otherwise just fine, with nothing to worry about.

At the time I believed I would eventually accept the situation and move on, but I couldn't shake the feeling that Oliver's forehead bulge could be corrected or lessened. So I scheduled an appointment in early November with Cranial Tech near Chicago for an evaluation and hopefully measured for a DOC Band. After reviewing photos of Oliver's head to the managing clinician, she responded:

" I would agree with you that there is a significant asymmetry to his head shape. I think it would be a very good idea to come for a consult. Because Oliver is 13 months, it would be difficult to attain perfect symmetry but I think the DOC band would benefit him. "

In the meantime I scheduled another appointment with our pediatrician to obtain a script that would allow us to get the helmet. (We can't legally or medically proceed without the script.) But instead the doctor lectured me about the unnecessary trauma Oliver would endure by wearing a helmet. And I got a finger pointing.

Needless to say, I still strongly disagree and would like a third opinion.The pediatrician said she would refer us to a neurosurgeon at the local Children's Hospital, but she essentially guaranteed that he won't provide a script either.

My wife essentially gave me a " told you so " , and continues to deny me any help.With each day I become more concerned that the window of opportunity to correct my son's head shape is passing.

I feel like have no options left.And it pains me to say that our marriage is in trouble. Deeply.Any advice is most welcome. Thanks so much in advance for your help.*I will try to upload photos for reference.

-- -mommy to Emma, Becca, , and A truly rich man is one whose children run into his arms when his hands are empty.  ~Author Unknown

[Guest guest]

Call your local Cranial Tech office. They should be able to suggest a few ped

Docs who are pro band. You don't say where you are located, but I agree with

below who doesn't think you'll find much help from the neurosurgeon. As

you know, time is NOT on your side, so the sooner you can get a script the

better. Would you wife be willing to at least go to a CT appointment with you?

I knew our daughter had a " flat spot " but it wasn't until I saw the Photo Study

pictures and heard the numbers that I knew without a doubt that I'd go to any

length to make sure she was banded ASAP. I applaud you for doing what you feel

is right for your son. I am also quick to acknowledge that all parents look at

their child(ren) and see 100% perfection. That's what Moms and Dads do best,

huh? :-) It's often very difficult to openly admit what some perceive as a

" cosmetic " flaw. I can empathize with your wife's feelings/beliefs but if I

could speak to her I'd beg her to at least with an open mind hear what the CT's

clinician has to say.

I continue to be SHOCKED by Ped Docs!!! And I can tell you, I would get up and

walk out of any Dr.'s office who referred to wearing a helmet as " traumatic " .

There is NO trauma!! Trauma will be on the playground when our daughter was

being made fun of for her mis-shaped head, mis-aligned eyes and ears. That

would be traumatic to her. Wearing a band that she doesn't even acknowledge, is

NOT traumatic. Shame on that Dr.!

Good Luck to you and your son!!

Jo Anne

Mom to , 7 Months

Doc Band for 2 weeks

Dallas, TX

>

>

>

> So - you have two obstacles - one is your wife and one is no script. You may

be able to get the script if you can find a pro band doctor. The neurosurgeon

will probably not give you one because most of them are not band friendly. Try a

database search to see if there are any local doctors that prescribed bands to

other babies on this board and schedule an appointment ASAP. It may mean going

without insurance coverage for it, etc., but if you really want the script, you

could probably find someone, even if you need to travel a little to do it.

>

>

>

> In terms of your wife, that's not so easy. Perhaps she could be convinced by

the CT people. I don't know - maybe others will have ideas for you.

>

>

>

> , mom to , 25.5 months

>

> STARband grad May 2009

>

> Chiro and CST

>

> land

>

>

>

>

>

> Ticker id: IvP3   Ticker id: yZZP     Ticker id: lFno

>

>

>

> wife disagrees; says no to helmet for son

>

>  

>

>

>

>

> Hello,

>

> I recently joined this group, and this is my first post.

>

> In short: I believe my son needs a reshaping helmet. His mother disagrees.

>

> Oliver is 13 months old. He presented frank breech, and was born in September

2008 via C-section.

>

> We did not notice until he was a month old that his head always turned to his

right.

>

> This caused torticollis on the right side of his neck, which in turn caused

his positional plagiocephaly. His forehead bulges on his right side, and his

head is long and narrow. (To be clear: I do not want to change the long and

narrow shape. I simply want to eliminate the forehead bulge as much as

possible.)

>

> No one even warned us of the potential (and preventable) problem of positional

plagiocephaly.

>

> Not the OBGYN.

> Not our first family doctor (who was a GP).

> And not our current pediatrician.

>

> For Oliver's first 6 months we tried repositioning, and only because of my

insistence and diligence. The repositioning gave some improvement, but the

forehead bulge is still noticeable from above.

>

> Since the end of those first 6 months I have tried †"  unsuccessfully †" to

convince my wife that Oliver needs a reshaping helmet, but she will not even

CONSIDER it. She thinks I'm making all of this up, that nothing is wrong, that I

need psychotherapy.

>

> I eventually persuaded my wife to switch from the GP to our current

pediatrician. During his 1-year checkup, I asked for a second opinion. After a

quick glance of Oliver's head the pediatrician said she didn't recommend a

helmet. She wasn't sure the forehead bulge would go away by itself, but said he

was otherwise just fine, with nothing to worry about.

>

> At the time I believed I would eventually accept the situation and move on,

but I couldn't shake the feeling that Oliver's forehead bulge could be corrected

or lessened.

>

> So I scheduled an appointment in early November with Cranial Tech near Chicago

for an evaluation and hopefully measured for a DOC Band. After reviewing photos

of Oliver's head to the managing clinician, she responded:

>

> " I would agree with you that there is a significant asymmetry to his head

shape. I think it would be a very good idea to come for a consult. Because

Oliver is 13 months, it would be difficult to attain perfect symmetry but I

think the DOC band would benefit him. "

>

> In the meantime I scheduled another appointment with our pediatrician to

obtain a script that would allow us to get the helmet. (We can't legally or

medically proceed without the script.) But instead the doctor lectured me about

the unnecessary trauma Oliver would endure by wearing a helmet. And I got a

finger pointing.

>

> Needless to say, I still strongly disagree and would like a third opinion.

>

> The pediatrician said she would refer us to a neurosurgeon at the local

Children's Hospital, but she essentially guaranteed that he won't provide a

script either.

>

> My wife essentially gave me a " told you so " , and continues to deny me any

help.

>

> With each day I become more concerned that the window of opportunity to

correct my son's head shape is passing.

>

> I feel like have no options left.

>

> And it pains me to say that our marriage is in trouble. Deeply.

>

> Any advice is most welcome. Thanks so much in advance for your help.

>

> *I will try to upload photos for reference.

>

[Guest guest]

Hi,

You may want to ask CT for a doctor they get referrals from.  Have you

tried introducing your wife to this board or reading literature? 

ly, I believe if a couple disagree on this, they should go with

the helmet, since at least one parent is bothered by the head shape. 

Luckily, both my husband and I are in agreement regarding treating

.  Even though 's head bothers me the most, we both agree.

-Kathy, mom to 16.5 months, 4.5 months in Starband

wrote:

 

So - you have two obstacles - one is your wife and one is no

script. You may be able to get the script if you can find a pro band

doctor. The neurosurgeon will probably not give you one because most of

them are not band friendly. Try a database search to see if there are

any local doctors that prescribed bands to other babies on this board

and schedule an appointment ASAP. It may mean going without insurance

coverage for it, etc., but if you really want the script, you could

probably find someone, even if you need to travel a little to do it.

 

In terms of your wife, that's not so easy. Perhaps she could be

convinced by the CT people. I don't know - maybe others will have ideas

for you.

 

, mom to , 25.5 months

STARband grad May 2009

Chiro and CST

land

       

 

wife disagrees; says no to helmet for son

 

Hello,

I recently joined this group, and this is my first post.

In short: I believe my son needs a reshaping helmet. His mother

disagrees.

Oliver is 13 months old. He presented frank breech, and was born in

September 2008 via C-section.

We did not notice until he was a month old that his head always turned

to his right.

This caused torticollis on the right side of his neck, which in turn

caused his positional plagiocephaly. His forehead bulges on his right

side, and his head is long and narrow. (To be clear: I do not want to

change the long and narrow shape. I simply want to eliminate the

forehead bulge as much as possible.)

No one even warned us of the potential (and preventable) problem of

positional plagiocephaly.

Not the OBGYN.

Not our first family doctor (who was a GP).

And not our current pediatrician.

For Oliver's first 6 months we tried repositioning, and only because of

my insistence and diligence. The repositioning gave some improvement,

but the forehead bulge is still noticeable from above.

Since the end of those first 6 months I have tried — unsuccessfully —

to convince my wife that Oliver needs a reshaping helmet, but she will

not even CONSIDER it. She thinks I'm making all of this up, that

nothing is wrong, that I need psychotherapy.

I eventually persuaded my wife to switch from the GP to our current

pediatrician. During his 1-year checkup, I asked for a second opinion.

After a quick glance of Oliver's head the pediatrician said she didn't

recommend a helmet. She wasn't sure the forehead bulge would go away by

itself, but said he was otherwise just fine, with nothing to worry

about.

At the time I believed I would eventually accept the situation and move

on, but I couldn't shake the feeling that Oliver's forehead bulge could

be corrected or lessened.

So I scheduled an appointment in early November with Cranial Tech near

Chicago for an evaluation and hopefully measured for a DOC Band. After

reviewing photos of Oliver's head to the managing clinician, she

responded:

"I would agree with you that there is a significant asymmetry to his

head shape. I think it would be a very good idea to come for a consult.

Because Oliver is 13 months, it would be difficult to attain perfect

symmetry but I think the DOC band would benefit him."

In the meantime I scheduled another appointment with our pediatrician

to obtain a script that would allow us to get the helmet. (We can't

legally or medically proceed without the script.) But instead the

doctor lectured me about the unnecessary trauma Oliver would endure by

wearing a helmet. And I got a finger pointing.

Needless to say, I still strongly disagree and would like a third

opinion.

The pediatrician said she would refer us to a neurosurgeon at the local

Children's Hospital, but she essentially guaranteed that he won't

provide a script either.

My wife essentially gave me a "told you so", and continues to deny me

any help.

With each day I become more concerned that the window of opportunity to

correct my son's head shape is passing.

I feel like have no options left.

And it pains me to say that our marriage is in trouble. Deeply.

Any advice is most welcome. Thanks so much in advance for your help.

*I will try to upload photos for reference.

[Guest guest]

Yes the neurosurgeon told us my son would out grown it, if they didn't

you'd see all kinds of ppl walking around with crooked heads. It made

sense until I actually paid attn and I do see all kinds of adults with

crooked heads, which I think means a lot since before back to sleep

plagio was only 1 in every 150 not like the 1 in 60 today

On 10/22/09, nwilkens2275 <nwilkens2275@...> wrote:

> Welcome to the group. I'm so sorry you're having a hard time getting anyone

> to take you seriously. I was in a similar situation. We had been blown off

> by the peds over and over again, had a neurosurgeon tell us a helmet wasn't

> needed, and yet my son hit 1 and his head hadn't changed for the better at

> all. So when he was 16 months old I started the process of getting him

> banded in earnest. I went to two more doctors, a ped that was willing to

> write the script and also a craniofacial surgeon who wrote a script after I

> broke down in tears asking him to please let me try to help my son.

>

> My son had severe (in my eyes) forehead bulging on his right side, and it

> was my primary concern. My husband wasn't adamently against banding, but he

> wasn't very supportive either and he was really focused on the money aspect.

> I literally cried daily for almost 2 weeks from all the stress and

> frustration I was feeling. Just when I was to the point of saying to my

> husband, " I don't care what you think, I'm doing this, " he relented to the

> point of saying, I'll support you in this. After a few weeks of treatment,

> when he could SEE the difference being made, he said " I'm glad you did

> this. " My son wore 2 DOCBands for almost 8 months (17 months old to 24.5

> months) and got fantastic improvement in his forehead bulge. His before and

> after pictures are in our Older Plagio Kids folder under Jake W.

>

> As for your wife, what is her stance exactly? Does she not see the asymmetry

> that you do? Or does she think the helmet won't work or is harmful? (BTW,

> don't EVEN get me started on your ped saying a band is traumatic for the

> child. That's such a load of uneducated bull crap! If I think about your ped

> too much it will seriously eat at me all day). Anyway...Maybe you can show

> her some photos of babies on our board or that you see elsewhere on the web?

> Has she been fully educated on plagio? I think maybe you just have to try

> one more time to sit down with facts and pictures and explain things to her

> rationally. Especially with a forehead bulge, with me, it was my concern

> that my son would be looking in the mirror at himself and that might be all

> he saw. It broke my heart to think about it so I had to try something and

> I'm so glad we did.

>

> Maybe someone in the Chicago area can suggest a band friendly ped that you

> can see? I'm afraid neurosurgeons are the most likely to blow your concerns

> off. They seem to be more interested in what is going on inside the head

> than out. Whereas a craniofacial surgeon at least looks at it more

> cosmetically and seem to be more band friendly.

>

> Anyway, please keep us posted and ask any other questions you might have.

> We're here to help! Best of luck!

>

>

> Jake-3 (DOCBand Grad 9/08)

>

>

>

>>

>> Hello,

>>

>> I recently joined this group, and this is my first post.

>>

>> In short: I believe my son needs a reshaping helmet. His mother disagrees.

>>

>> Oliver is 13 months old. He presented frank breech, and was born in

>> September 2008 via C-section.

>>

>> We did not notice until he was a month old that his head always turned to

>> his right.

>>

>> This caused torticollis on the right side of his neck, which in turn

>> caused his positional plagiocephaly. His forehead bulges on his right

>> side, and his head is long and narrow. (To be clear: I do not want to

>> change the long and narrow shape. I simply want to eliminate the forehead

>> bulge as much as possible.)

>>

>> No one even warned us of the potential (and preventable) problem of

>> positional plagiocephaly.

>>

>> Not the OBGYN.

>> Not our first family doctor (who was a GP).

>> And not our current pediatrician.

>>

>> For Oliver's first 6 months we tried repositioning, and only because of my

>> insistence and diligence. The repositioning gave some improvement, but the

>> forehead bulge is still noticeable from above.

>>

>> Since the end of those first 6 months I have tried — unsuccessfully — to

>> convince my wife that Oliver needs a reshaping helmet, but she will not

>> even CONSIDER it. She thinks I'm making all of this up, that nothing is

>> wrong, that I need psychotherapy.

>>

>> I eventually persuaded my wife to switch from the GP to our current

>> pediatrician. During his 1-year checkup, I asked for a second opinion.

>> After a quick glance of Oliver's head the pediatrician said she didn't

>> recommend a helmet. She wasn't sure the forehead bulge would go away by

>> itself, but said he was otherwise just fine, with nothing to worry about.

>>

>> At the time I believed I would eventually accept the situation and move

>> on, but I couldn't shake the feeling that Oliver's forehead bulge could be

>> corrected or lessened.

>>

>> So I scheduled an appointment in early November with Cranial Tech near

>> Chicago for an evaluation and hopefully measured for a DOC Band. After

>> reviewing photos of Oliver's head to the managing clinician, she

>> responded:

>>

>> " I would agree with you that there is a significant asymmetry to his head

>> shape. I think it would be a very good idea to come for a consult. Because

>> Oliver is 13 months, it would be difficult to attain perfect symmetry but

>> I think the DOC band would benefit him. "

>>

>> In the meantime I scheduled another appointment with our pediatrician to

>> obtain a script that would allow us to get the helmet. (We can't legally

>> or medically proceed without the script.) But instead the doctor lectured

>> me about the unnecessary trauma Oliver would endure by wearing a helmet.

>> And I got a finger pointing.

>>

>> Needless to say, I still strongly disagree and would like a third opinion.

>>

>> The pediatrician said she would refer us to a neurosurgeon at the local

>> Children's Hospital, but she essentially guaranteed that he won't provide

>> a script either.

>>

>> My wife essentially gave me a " told you so " , and continues to deny me any

>> help.

>>

>> With each day I become more concerned that the window of opportunity to

>> correct my son's head shape is passing.

>>

>> I feel like have no options left.

>>

>> And it pains me to say that our marriage is in trouble. Deeply.

>>

>> Any advice is most welcome. Thanks so much in advance for your help.

>>

>> *I will try to upload photos for reference.

>>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

A truly rich man is one whose children run into his arms when his

hands are empty. ~Author Unknown

[Guest guest]

Yes I took pics of my son prior to treatment, b/c it effected his ears

he couldn't wear glasses, his sunglasses didn't sit on his lower ear

at all, if we lowered them to sit on it the glasses were so crooked

that 1 eyebrow was completely bvisible the other wasn't at all

On 10/22/09, jillmckay@... <jillmckay@...> wrote:

>

> Is there a chance your wife might spend some time on the Cranial Tech

> website (if she hasn't already) - before the November consult at Cranial

> Tech? There is lots of info on that site, including before/after pictures

> and medical studies that might help. The pictures that really got my

> attention were the CT scans of the brain in the plagio babies...you can see

> how, inside their little heads, things are not forming symmetrically either.

> Those photos really impacted me, even when we were considering a second

> band for my son (which we ended up doing).

>

> Many of the parents on this board had a similar experience with the

> pediatrician...it was our third pediatrician who agreed wholeheartedly that

> a helmet was in order, and our son had moderate/severe plagio (17mm). And

> the specialist we saw didn't recommend one either...just took the " wait and

> see " approach.

>

> Another question: has your son been treated for the torticollis, or is that

> resolved? It took several months of physical therapy and at-home stretching

> for my son to get full rotation in his neck. We still do stretches at home

> and PT once a month - and have been advised to continue that through 18

> months. Our second pediatrician didn't think the band was necessary, but

> did send us to PT for the torticollis.

>

> One thing that struck me early on as we were researching the possibility of

> a helmet for our son was considering how his head shape (at the time, very

> asymmetrical) would affect the way things fit him...bicycle helmets,

> baseball helmets, etc. I read a story along the way about a mom who

> couldn't find a bicycle helmet to fit her child's head (even the adult

> helmets wouldn't fit). I wasn't eager to do a helmet by any means, but when

> I started to consider the various long-term ramifications of not doing one,

> my desire changed. But even more important than bicycle helmets was the

> possible medical implications of leaving the plagio untreated (vision

> problems, jaw problems, chewing issues, ear problems, migrains,

> developmental issues just to name a few). And there are lots of medical

> studies about that. I think I researched them all trying to appeal our

> insurance company! We had a mutual friend whose son needed a helmet and the

> peds told him the same thing...wait and see or not needed. The dad was in

> dental school so started asking questions of dentists, orthodontists,

> doctors, etc. about what he was getting from the peds about it being " no big

> deal " . Those he consulted all said the same thing...very risky to leave

> untreated. They were speaking mostly about dental issues, with serious

> concerns about the long-term effect of the facial structure being out of

> alignment.

>

> Don't know where your son will end up on the scale - mild, moderate or

> severe - but depending on how he measures, perhaps that may help get you

> both on the same page. I hope so. I know that must be very difficult. In

> the meantime, you'll find lots of support and information here as you seek

> treatment for your son.

>

> Jill

> Cade's mom (DOC Band #1 06/18/09-08/05/09; DOC Band #2 09/29/09-present)

> Texas

>

>

>

>>

>> Hello,

>>

>> I recently joined this group, and this is my first post.

>>

>> In short: I believe my son needs a reshaping helmet. His mother disagrees.

>>

>> Oliver is 13 months old. He presented frank breech, and was born in

>> September 2008 via C-section.

>>

>> We did not notice until he was a month old that his head always turned to

>> his right.

>>

>> This caused torticollis on the right side of his neck, which in turn

>> caused his positional plagiocephaly. His forehead bulges on his right

>> side, and his head is long and narrow. (To be clear: I do not want to

>> change the long and narrow shape. I simply want to eliminate the forehead

>> bulge as much as possible.)

>>

>> No one even warned us of the potential (and preventable) problem of

>> positional plagiocephaly.

>>

>> Not the OBGYN.

>> Not our first family doctor (who was a GP).

>> And not our current pediatrician.

>>

>> For Oliver's first 6 months we tried repositioning, and only because of my

>> insistence and diligence. The repositioning gave some improvement, but the

>> forehead bulge is still noticeable from above.

>>

>> Since the end of those first 6 months I have tried — unsuccessfully — to

>> convince my wife that Oliver needs a reshaping helmet, but she will not

>> even CONSIDER it. She thinks I'm making all of this up, that nothing is

>> wrong, that I need psychotherapy.

>>

>> I eventually persuaded my wife to switch from the GP to our current

>> pediatrician. During his 1-year checkup, I asked for a second opinion.

>> After a quick glance of Oliver's head the pediatrician said she didn't

>> recommend a helmet. She wasn't sure the forehead bulge would go away by

>> itself, but said he was otherwise just fine, with nothing to worry about.

>>

>> At the time I believed I would eventually accept the situation and move

>> on, but I couldn't shake the feeling that Oliver's forehead bulge could be

>> corrected or lessened.

>>

>> So I scheduled an appointment in early November with Cranial Tech near

>> Chicago for an evaluation and hopefully measured for a DOC Band. After

>> reviewing photos of Oliver's head to the managing clinician, she

>> responded:

>>

>> " I would agree with you that there is a significant asymmetry to his head

>> shape. I think it would be a very good idea to come for a consult. Because

>> Oliver is 13 months, it would be difficult to attain perfect symmetry but

>> I think the DOC band would benefit him. "

>>

>> In the meantime I scheduled another appointment with our pediatrician to

>> obtain a script that would allow us to get the helmet. (We can't legally

>> or medically proceed without the script.) But instead the doctor lectured

>> me about the unnecessary trauma Oliver would endure by wearing a helmet.

>> And I got a finger pointing.

>>

>> Needless to say, I still strongly disagree and would like a third opinion.

>>

>> The pediatrician said she would refer us to a neurosurgeon at the local

>> Children's Hospital, but she essentially guaranteed that he won't provide

>> a script either.

>>

>> My wife essentially gave me a " told you so " , and continues to deny me any

>> help.

>>

>> With each day I become more concerned that the window of opportunity to

>> correct my son's head shape is passing.

>>

>> I feel like have no options left.

>>

>> And it pains me to say that our marriage is in trouble. Deeply.

>>

>> Any advice is most welcome. Thanks so much in advance for your help.

>>

>> *I will try to upload photos for reference.

>>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

A truly rich man is one whose children run into his arms when his

hands are empty. ~Author Unknown

[Guest guest]

A point that was made to me, which makes the most sense of everything I've

heard, is that the Back to Sleep Campaign was launched in 1994. It's only

children born since 1994, who are most at risk. If you start looking at 14 year

olds and those younger, you in fact will see a LOT of " CROOKED HEADS. " Prior to

Back To Sleep, when all of us (adults) were put to bed on our bellys, children

developed leg problems. Most of us recall children in leg braces. Has anyone

given any thought to the last time you saw a child in leg braces...doesn't

happen anymore! Now children are wearing cranial bands.

Add to the Back to Sleep Campaign, the fact that the car seat CARRIER became

ever so popular and not only do you have an infant lying on his back all day and

night, but his head is being pushed up (flat) at all times he/she is riding in

the car, being carried or strolled in the stroller with the car seat attachment.

I hate to argue with a NEUROSURGEON but I don't see how one can truly believe

that an infant can " out grow " a flat spot. It makes no sense to me!

Jo Anne

Mom to (7 months)

Doc Band (October 9th)

Dallas, TX

> >>

> >> Hello,

> >>

> >> I recently joined this group, and this is my first post.

> >>

> >> In short: I believe my son needs a reshaping helmet. His mother disagrees.

> >>

> >> Oliver is 13 months old. He presented frank breech, and was born in

> >> September 2008 via C-section.

> >>

> >> We did not notice until he was a month old that his head always turned to

> >> his right.

> >>

> >> This caused torticollis on the right side of his neck, which in turn

> >> caused his positional plagiocephaly. His forehead bulges on his right

> >> side, and his head is long and narrow. (To be clear: I do not want to

> >> change the long and narrow shape. I simply want to eliminate the forehead

> >> bulge as much as possible.)

> >>

> >> No one even warned us of the potential (and preventable) problem of

> >> positional plagiocephaly.

> >>

> >> Not the OBGYN.

> >> Not our first family doctor (who was a GP).

> >> And not our current pediatrician.

> >>

> >> For Oliver's first 6 months we tried repositioning, and only because of my

> >> insistence and diligence. The repositioning gave some improvement, but the

> >> forehead bulge is still noticeable from above.

> >>

> >> Since the end of those first 6 months I have tried — unsuccessfully — to

> >> convince my wife that Oliver needs a reshaping helmet, but she will not

> >> even CONSIDER it. She thinks I'm making all of this up, that nothing is

> >> wrong, that I need psychotherapy.

> >>

> >> I eventually persuaded my wife to switch from the GP to our current

> >> pediatrician. During his 1-year checkup, I asked for a second opinion.

> >> After a quick glance of Oliver's head the pediatrician said she didn't

> >> recommend a helmet. She wasn't sure the forehead bulge would go away by

> >> itself, but said he was otherwise just fine, with nothing to worry about.

> >>

> >> At the time I believed I would eventually accept the situation and move

> >> on, but I couldn't shake the feeling that Oliver's forehead bulge could be

> >> corrected or lessened.

> >>

> >> So I scheduled an appointment in early November with Cranial Tech near

> >> Chicago for an evaluation and hopefully measured for a DOC Band. After

> >> reviewing photos of Oliver's head to the managing clinician, she

> >> responded:

> >>

> >> " I would agree with you that there is a significant asymmetry to his head

> >> shape. I think it would be a very good idea to come for a consult. Because

> >> Oliver is 13 months, it would be difficult to attain perfect symmetry but

> >> I think the DOC band would benefit him. "

> >>

> >> In the meantime I scheduled another appointment with our pediatrician to

> >> obtain a script that would allow us to get the helmet. (We can't legally

> >> or medically proceed without the script.) But instead the doctor lectured

> >> me about the unnecessary trauma Oliver would endure by wearing a helmet.

> >> And I got a finger pointing.

> >>

> >> Needless to say, I still strongly disagree and would like a third opinion.

> >>

> >> The pediatrician said she would refer us to a neurosurgeon at the local

> >> Children's Hospital, but she essentially guaranteed that he won't provide

> >> a script either.

> >>

> >> My wife essentially gave me a " told you so " , and continues to deny me any

> >> help.

> >>

> >> With each day I become more concerned that the window of opportunity to

> >> correct my son's head shape is passing.

> >>

> >> I feel like have no options left.

> >>

> >> And it pains me to say that our marriage is in trouble. Deeply.

> >>

> >> Any advice is most welcome. Thanks so much in advance for your help.

> >>

> >> *I will try to upload photos for reference.

> >>

> >

> >

> >

>

> --

> Sent from my mobile device

>

> -mommy to Emma, Becca, ,

> and

>

> A truly rich man is one whose children run into his arms when his

> hands are empty. ~Author Unknown

>

[Guest guest]

Even with the records though it will depend on how long out the neuro

is scheduling, since the info the doctor gave the neuro did not have

them concerned that he might have craniosynosis they didn't feel his

appt was an emergency so he got lumped with everyone else waiting,

which was a 3 month wait. My dh was not comfortable starting until

the neuro ruled out cranio so we waited the 3 month

Btw...I have a story, all the " specialists " think it is not related

but since it wasn't caught prior we will never know. My son did not

talk, his 1st word was not until 15 month. Starting after he

graduated from his helmet he got repeated ear infections and chronic

fluif. He did not get any prior to the band but he had severe ear

assymetry so it is possible that he had fluid buildup furthur in his

ear where it could not be seen but could have been effecting his

hearing. At 18 month he had a hearing test and failed on his left

side. That is the side that previously was pushed down, forward and

crooked as well as having a bulge behind it, it also looks great now,

not crooked and no bulge but it was not corrected 100%. A tympanogram

showed fluid in the ear . He then saw the ent but by then he had an

ear infection. They got rid of that but he still had fluid in his

left ear and failed the hearing test. In the end they put in tubes

but at his post op visit he failed a hearing test again in the left

ear, the tube was clogged. He did not get a passed hearing test in

that ear until over 4 month post op. So for all we know he may have

never heard properly out of that ear or if he did it may have been

intermittant at best. The therapists are positive the hearing had a

significant impact on his speech. At 21 month he tested at least a

year behind in speech. He will be 3 in 2 wks and though he has made

significant strides it is like he is developing at a normal speed so

as he learns things what he should know becomes greater. Right now he

talks in 3 and 4 word sentences even and has the receptive language of

a 4 year old. But he uses almost no consanant sounds, he can use b,

d, p, m, and n in words but rarely does. Recently he has also started

being able to say a version of the s and y sound. But his therapists

think his hearing was muffled all that time so he didn't hear any

consanants clearly.

On 10/22/09, deronhusak@... <deronhusak@...> wrote:

> Thank you ALL for such timely, insightful and positive responses. It's

> helping to keep me going.

>

>

> So you know:

>

> Our pediatrician was not even familiar with Cranial Tech nor the DOC Band.

> BIG RED FLAG.

>

> My wife thinks I'm doctor shopping. (Well she may be correct, considering

> the lack of knowledgable doctors.)

>

> We live in Columbus Ohio, a 6 hour drive from Chicago.

>

> I was told today (10-22) that Oliver's records will be transferred to

> Children's Hospital within a week, so the neurosurgeon appointment should be

> soon.

>

> Interesting article from the Washington Post:

> http://www.washingtonpost.com/wp-dyn/articles/A14258-2005Mar7.html

>

>

>

> MELANIE

> I like how you distilled the situation to those 2 obstacles.

>

> Yes, I searched this group's database and found only 1 local neurosurgeon —

> whose name I mentioned to the pediatrician, but she said he doesn't work at

> Children's anymore. So the referral will be to his replacement there. Maybe

> I need to broaden the geography of my search from Columbus to Cleveland,

> Cincy or even Pittsburgh (my dad still lives there).

>

>

> JO ANNE

> We live in Columbus, Ohio, and the closest Cranial Tech office is in Chicago

> (2 locations). We have an appointment at the Oak Brook office on Nov 2.

>

> Apparently it's illegal for clinics to provide doctor referrals. I already

> asked. Kinda makes sense, but frustrating nonetheless.

>

> My wife almost seemed willing to go to Cranial Tech, but I think she backed

> out after the pediatrician immediately dismissed any notion of support. That

> said, I think it's best for us all to still go for the evaluation — even

> without the script.

>

>

> KATHY

> I will show this message board and the other ( " All About Plagiocephaly " )

> with my wife this weekend. Just found them on Sunday, so they are fairly new

> to me too.

>

> Good argument about going forward with the treatment even if the parents

> disagree. I heard a doctor on the radio this morning state that

> prescriptions are given when the benefits outweigh the risks. Makes so much

> sense.

>

>

> NICOLE

> Thank you for sharing the details of your story. It gives me strength and

> hope that my wife might change her mind. I will show her Jake's photos.

>

> My wife believes that Oliver is the way he's supposed to be: Not perfect,

> but himself. She is aware of his forehead bulge (her mom first pointed it

> out to us), but he resists the idea that it should be treated. It was enough

> of an ordeal to convince her of his torticollis (which has since lessened

> considerably, but may not be completely gone).

>

>

> SUSIE

> WOW — a referral — I will contact Dr. Hong tomorrow! Would be great to make

> an appointment for the same day as the Cranial Tech evaluation, which is at

> 9 AM. (Will deal with reverse order of appointments if necessary.) Thank

> you!

>

>

> MWBARTEK

> I've had exactly this discussion with my wife, who replies that there is

> nothing wrong and I'm the only who notices his forehead bulge. *sigh* Good

> point about only regretting NO treatment.

>

>

> BRANDI

> looks like a wonderful little boy! (Love the Stillers helmet

> decoration.)

>

> Up to now we have been happily married for 10 years. My wife's steadfast

> refusal to consider any treatment is the SOLE reason for our troubles.

>

> I agree that communication is KEY. The problem seems to be that neither side

> is willing to budge. I try to explain in a calm, positive manner the

> benefits of treatment with visual examples. But it always ends in an angry

> stalemate.

>

> However, at her suggestion we have both agreed to seek counseling starting

> Tuesday.

>

> I hope reading about 's experience will help place my wife's mind at

> ease. Thank you for sharing.

>

>

> JILL

> Excellent point about seeing the brain formation inside with the CT scans.

>

> I learned about Oliver's torticollis by researching " flat head syndrome " on

> the Internet. By the time between we realizing what torticollis was,

> recognizing that his forehead bulge was caused by it, and waiting for our

> regularly scheduled appointment with our GP, it felt like forever.

>

> In fact, when I asked about it the GP said he might have it but seemed to be

> minor. I asked if we should get Oliver some physical therapy, but again she

> said it wasn't necessary. Again, I learned about stretching exercises on the

> Internet, but the first nanny didn't do them, and I'm at work all day so

> it's near impossible for me to do the exercises myself on a daily basis.

>

> So no, Oliver has not been treated for torticollis. Even the current

> pediatrician says he's fine. Why is it so difficult to find an up-to-date

> pediatrician?

>

>

>

>

>

>>

>> Hello,

>>

>> I recently joined this group, and this is my first post.

>>

>> In short: I believe my son needs a reshaping helmet. His mother disagrees.

>>

>> Oliver is 13 months old. He presented frank breech, and was born in

>> September 2008 via C-section.

>>

>> We did not notice until he was a month old that his head always turned to

>> his right.

>>

>> This caused torticollis on the right side of his neck, which in turn

>> caused his positional plagiocephaly. His forehead bulges on his right

>> side, and his head is long and narrow. (To be clear: I do not want to

>> change the long and narrow shape. I simply want to eliminate the forehead

>> bulge as much as possible.)

>>

>> No one even warned us of the potential (and preventable) problem of

>> positional plagiocephaly.

>>

>> Not the OBGYN.

>> Not our first family doctor (who was a GP).

>> And not our current pediatrician.

>>

>> For Oliver's first 6 months we tried repositioning, and only because of my

>> insistence and diligence. The repositioning gave some improvement, but the

>> forehead bulge is still noticeable from above.

>>

>> Since the end of those first 6 months I have tried — unsuccessfully — to

>> convince my wife that Oliver needs a reshaping helmet, but she will not

>> even CONSIDER it. She thinks I'm making all of this up, that nothing is

>> wrong, that I need psychotherapy.

>>

>> I eventually persuaded my wife to switch from the GP to our current

>> pediatrician. During his 1-year checkup, I asked for a second opinion.

>> After a quick glance of Oliver's head the pediatrician said she didn't

>> recommend a helmet. She wasn't sure the forehead bulge would go away by

>> itself, but said he was otherwise just fine, with nothing to worry about.

>>

>> At the time I believed I would eventually accept the situation and move

>> on, but I couldn't shake the feeling that Oliver's forehead bulge could be

>> corrected or lessened.

>>

>> So I scheduled an appointment in early November with Cranial Tech near

>> Chicago for an evaluation and hopefully measured for a DOC Band. After

>> reviewing photos of Oliver's head to the managing clinician, she

>> responded:

>>

>> " I would agree with you that there is a significant asymmetry to his head

>> shape. I think it would be a very good idea to come for a consult. Because

>> Oliver is 13 months, it would be difficult to attain perfect symmetry but

>> I think the DOC band would benefit him. "

>>

>> In the meantime I scheduled another appointment with our pediatrician to

>> obtain a script that would allow us to get the helmet. (We can't legally

>> or medically proceed without the script.) But instead the doctor lectured

>> me about the unnecessary trauma Oliver would endure by wearing a helmet.

>> And I got a finger pointing.

>>

>> Needless to say, I still strongly disagree and would like a third opinion.

>>

>> The pediatrician said she would refer us to a neurosurgeon at the local

>> Children's Hospital, but she essentially guaranteed that he won't provide

>> a script either.

>>

>> My wife essentially gave me a " told you so " , and continues to deny me any

>> help.

>>

>> With each day I become more concerned that the window of opportunity to

>> correct my son's head shape is passing.

>>

>> I feel like have no options left.

>>

>> And it pains me to say that our marriage is in trouble. Deeply.

>>

>> Any advice is most welcome. Thanks so much in advance for your help.

>>

>> *I will try to upload photos for reference.

>>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

A truly rich man is one whose children run into his arms when his

hands are empty. ~Author Unknown

[Guest guest]

So sorry to hear about the unrest in your home.

Can CT give you a name of a dr or two that are band friendly?

You could also search for " chicago " thru old messages to see the other

drs that people here have seen.

I would love to see pics... the CT photostudy would be great!

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

wife disagrees; says no to helmet for son

Hello,

I recently joined this group, and this is my first post.

In short: I believe my son needs a reshaping helmet. His mother

disagrees.

Oliver is 13 months old. He presented frank breech, and was born in

September 2008 via C-section.

We did not notice until he was a month old that his head always turned

to his right.

This caused torticollis on the right side of his neck, which in turn

caused his positional plagiocephaly. His forehead bulges on his right

side, and his head is long and narrow. (To be clear: I do not want to

change the long and narrow shape. I simply want to eliminate the

forehead bulge as much as possible.)

No one even warned us of the potential (and preventable) problem of

positional plagiocephaly.

Not the OBGYN.

Not our first family doctor (who was a GP).

And not our current pediatrician.

For Oliver's first 6 months we tried repositioning, and only because of

my insistence and diligence. The repositioning gave some improvement,

but the forehead bulge is still noticeable from above.

Since the end of those first 6 months I have tried — unsuccessfully —

to convince my wife that Oliver needs a reshaping helmet, but she will

not even CONSIDER it. She thinks I'm making all of this up, that

nothing is wrong, that I need psychotherapy.

I eventually persuaded my wife to switch from the GP to our current

pediatrician. During his 1-year checkup, I asked for a second opinion.

After a quick glance of Oliver's head the pediatrician said she didn't

recommend a helmet. She wasn't sure the forehead bulge would go away by

itself, but said he was otherwise just fine, with nothing to worry

about.

At the time I believed I would eventually accept the situation and move

on, but I couldn't shake the feeling that Oliver's forehead bulge could

be corrected or lessened.

So I scheduled an appointment in early November with Cranial Tech near

Chicago for an evaluation and hopefully measured for a DOC Band. After

reviewing photos of Oliver's head to the managing clinician, she

responded:

" I would agree with you that there is a significant asymmetry to his

head shape. I think it would be a very good idea to come for a consult.

Because Oliver is 13 months, it would be difficult to attain perfect

symmetry but I think the DOC band would benefit him. "

In the meantime I scheduled another appointment with our pediatrician

to obtain a script that would allow us to get the helmet. (We can't

legally or medically proceed without the script.) But instead the

doctor lectured me about the unnecessary trauma Oliver would endure by

wearing a helmet. And I got a finger pointing.

Needless to say, I still strongly disagree and would like a third

opinion.

The pediatrician said she would refer us to a neurosurgeon at the local

Children's Hospital, but she essentially guaranteed that he won't

provide a script either.

My wife essentially gave me a " told you so " , and continues to deny me

any help.

With each day I become more concerned that the window of opportunity to

correct my son's head shape is passing.

I feel like have no options left.

And it pains me to say that our marriage is in trouble. Deeply.

Any advice is most welcome. Thanks so much in advance for your help.

*I will try to upload photos for reference.