(unknown)

[Guest guest]

I go to CT in NJ and they only measure the head's circumference at each visit. I asked about the measuring at my last appt. and was told they get measured when they are going to grow out of their helmets soon. My son was banded on 1/23/09 and is probably going to need a second helmet. In about a month we will go through the measuring and pic. taking again to get started on the process for a second helmet. What therapist are you working with? Are you seeing improvement so far?

-Meredith

Plagiocephaly From: lkomo7@...Date: Tue, 17 Mar 2009 10:21:35 -0700Subject: (unknown)

Hello, My 8 month old son has been DOC banded since 1/12/09. I goto Cranial Tech every two weeks and they do not measure him they just compare his head to the headsicle. I have been reading posts and it seems that some places measure each time. Is that true? Does anyone goto CT in NJ and they measure your child's progress?

Thanks

Lori

Windows Live™ Groups: Create an online spot for your favorite groups to meet. Check it out.

[Guest guest]

I've been taking my son to CT in NJ since October 2008 - no, they don't take

measurements every time. He was remeasured and re-photographed and DSI'd only

when it was time for him to get fitted for his second helmet. Taking

measurements is an extremely time consuming process, and depending on which

therapist is doing the measuring and how much your son/daughter moves on any

given day, measurements may or may not be consistent and therefore aren't always

an accurate indicator of the progress your child is making.

Measurements are primarily a means for CT to help you get insurance coverage

(insurance companies base part of their decision to provide/deny coverage

depending on how severe your child's case is). I've been a therapist myself for

10 years and I have a strong background in orthotics - I can definitely

appreciate putting a quantifiable number on progress and understand why you'd

like to know your child's measurements (especially when most posters on this

board are very focused on it), but don't make too much of it. Remember that no

one outside of CT will EVER be approaching your son/daughter with a set of

calipers and a measuring tape to determine whether or not his or her head is

symmetrical... it's all about appearance.

As far as my son is concerned, we've seen (and felt!) meaningful changes in his

head over the past several months despite the fact that his plagio was caused in

utero and has been difficult to correct. We've recently discussed a third band

since it's been so difficult to correct. There's still room for progress, but

at this point my husband and I have opted to just let nature take its course

(and let my son grow some hair!) and possibly pursue alternatives such as

craniosacral therapy.

Good luck to you both - and please don't stress over those numbers too much!!!

;-)

Take care,

Jess

>

>

> I go to CT in NJ and they only measure the head's circumference at each visit.

I asked about the measuring at my last appt. and was told they get measured when

they are going to grow out of their helmets soon. My son was banded on 1/23/09

and is probably going to need a second helmet. In about a month we will go

through the measuring and pic. taking again to get started on the process for a

second helmet. What therapist are you working with? Are you seeing improvement

so far?

>

> -Meredith

>

>

>

> Plagiocephaly

> From: lkomo7@...

> Date: Tue, 17 Mar 2009 10:21:35 -0700

> Subject: (unknown)

>

>

>

>

>

>

>

>

>

>

> Hello, My 8 month old son has been DOC banded since 1/12/09. I goto Cranial

Tech every two weeks and they do not measure him they just compare his head to

the headsicle. I have been reading posts and it seems that some places measure

each time. Is that true? Does anyone goto CT in NJ and they measure your

child's progress?

>

> Thanks

> Lori

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Windows Live™ Groups: Create an online spot for your favorite groups to meet.

> http://windowslive.com/online/groups?ocid=TXT_TAGLM_WL_groups_032009

>

[Guest guest]

OK, for some reason when I send an email, it goes to my SPAM page, don't know

why.  So I have tried forwarding them to the group, shall have to call in Dr.

Fix The Damn computer !! 

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: ROBERTA DOYLE <rcd1929@...>

Subject: [ ] (unknown)

" " < >

Date: Sunday, March 29, 2009, 11:15 AM

hi, something is amiss with my computer I can't seem to send mail.

Lottie, i have sent you two emails in regard to Bob, and I think you must snag

them before they get to the site! Sabotage, that's what it is, just plain

sabotage.  Let's see if this gets through,

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

[Guest guest]

There's definately some nice rounding out and the numbers are good also. Since you've only gone 9 weeks, will you be keeping him in the band longer to get the brachy down lower. While I'd love to have at an 89.3, you might as well try and get that number down a couple more percentage points. I'm assuming that there's still room left in the band?

, mom to , 20 months

23 weeks in STARband plus CST

land

(unknown)My son has been in his Boston Band for 9 weeks. These are his numbers and I have attached a scan. I would love to hear some feedback? I still think his head looks flatish and his brachiocephaly is still prominent.Diagonal asymmetry: 6mm -> 1 mmCephalic ratio: 92.1% -> 89.3%

[Guest guest]

When Bryce was just about 2 years old, just after I had gotten

him gluten-free, I noticed that sometimes when he had milk on cereal in the

morning he would behave wildly and irrationally, running around, screaming,

hiding under the table.

We aren’t big milk drinkers, so it was easy for me to

notice that the crazy behavior was connected to having milk. At first I

was confused because it wasn’t consistent, but it happened often enough

that I was sure there was a connection. Then I called the dairy and asked

what they fed their cows (not easy to find this out, but I was persistent).

Found out that sometimes they fed them grain, including barley, and other times

it was just the hay. At the time, I hadn’t heard the connection

with celiacs not being able to digest lactose because of damaged villi, so I decided

that it was when he had milk from barley-fed cows that was affecting him.

In cheese, the enzymes break down the protein and butter, cream, etc. are

mostly fat with no protein. Which is the true explanation, I have no

idea. I just know that it works so that’s what I do.

I have heard lots about the “Eat Right for Your Blood Type”

book. Many folks swear by it.

Pam

[Guest guest]

Hi,

I'm so sorry! Something similar has happened to many of us. We

started a band the week of my son's first birthday. My son is

significantly improved at 21 months and I still feel horrible about not

starting sooner. There is still time for a lot of improvement starting

at 11 months, but it takes longer. Personally, what matters to me is

not how long it takes, but that my son gets the best correction

possible. So, we are still in a helmet and will be until the ortho

refuses service or we are sure the improvement has stopped. (My son

wears a Starband, so we had the option of wearing it longer.) We have

also done aggressive alternative treatments (osteopath and chiro/CST).

Best,

Kathy, mom to 21 months, plagio treated since 12 months

Crasilli wrote:

Hi everyone. My 10 month old son, twin a, has had

torticollis since birth which has caused plagio. From birth I noticed

that the entire left side of his face is anterior to the left. His

pediatrician acknowleged his condition but wanted to "wait things out"

to see if he outgrew it. At around 5 months, only after I kept asking

questions, his pediatrician finally refered him to a physical

therapist. He went to pt once a week, for a total of 7 sessions before

his therapist told me "there is nothing more we can do for him, he will

outgrow it as he begins to walk and has more control over his own

body". After researching torticollis a great deal I learned that

neither his pedi or pt knew what they were talking about. I insisted

his pedi refer us someplace that would help us. Last week we went to

Cranial Tech in CT, an hour from home but well worth the drive. The

nurse there agreed with me, that my son should still be in therapy as

well as in a DOCBand. Thanks to everyone at Cranial Tech we are finally

on the right path. However, I am extremely worried that it is too late

being that my son is 10 months old and will be 11 months old by the

time he actually gets his band. Has anyone elses child begun treatment

at this age? If so how long was the band necassary and how successful

was treatment? I am so angry with my son's pediatrician. I feel he

should have refered us to Cranial Tech much sooner and to a pediatric

pt rather than one who not only rarely worked with children but one who

only dealt with torticollis once in an adult patient. I also feel

guilty for not standing up to him sooner and getting my son the help he

needed sooner. I am a first time mother who was blessed with twins. I

counted on our pediatrician to make the best decisions for my son. I

should have went with my motherly intuition.

[Guest guest]

Hi Kathy,

Feel good about yourself that you are doing the best for your son now and that you always did -- it's not your fault you weren't an expert at Plagiocephaly.

If you don't mind sharing, could you tell us the correction you've seen, maybe month by month? I think we all meet Moms with older kids who need correction and I'd love to be able to give them real numbers on what can be done. It breaks my heart to say nothing if those sweet babies can get better.

Hi everyone. My 10 month old son, twin a, has had torticollis since birth which has caused plagio. From birth I noticed that the entire left side of his face is anterior to the left. His pediatrician acknowleged his condition but wanted to "wait things out" to see if he outgrew it. At around 5 months, only after I kept asking questions, his pediatrician finally refered him to a physical therapist. He went to pt once a week, for a total of 7 sessions before his therapist told me "there is nothing more we can do for him, he will outgrow it as he begins to walk and has more control over his own body". After researching torticollis a great deal I learned that neither his pedi or pt knew what they were talking about. I insisted his pedi refer us someplace that would help us. Last week we went to Cranial Tech in CT, an hour from home but well worth the drive. The

nurse there agreed with me, that my son should still be in therapy as well as in a DOCBand. Thanks to everyone at Cranial Tech we are finally on the right path. However, I am extremely worried that it is too late being that my son is 10 months old and will be 11 months old by the time he actually gets his band. Has anyone elses child begun treatment at this age? If so how long was the band necassary and how successful was treatment? I am so angry with my son's pediatrician. I feel he should have refered us to Cranial Tech much sooner and to a pediatric pt rather than one who not only rarely worked with children but one who only dealt with torticollis once in an adult patient. I also feel guilty for not standing up to him sooner and getting my son the help he needed sooner. I am a first time mother who was blessed with twins. I counted on our pediatrician to make the best decisions for my son. I should have went with my motherly

intuition.

[Guest guest]

- I totally understand all you wrote! So many moms have been

just where you are!!!

Your babys age is not too old... and you are doing exactly what you

should be doing! You did follow your mom intuition and you are getting

help for your baby!

Feel free to ask any and all questions here... everyone is so helpful!

I am so glad you spoke up and were the voice for your baby!

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

(unknown)

Hi everyone. My 10 month old son, twin a, has had torticollis since

birth which has caused plagio. From birth I noticed that the entire

left side of his face is anterior to the left. His pediatrician

acknowleged his condition but wanted to " wait things out " to see if he

outgrew it. At around 5 months, only after I kept asking questions, his

pediatrician finally refered him to a physical therapist. He went to pt

once a week, for a total of 7 sessions before his therapist told me

" there is nothing more we can do for him, he will outgrow it as he

begins to walk and has more control over his own body " . After

researching torticollis a great deal I learned that neither his pedi or

pt knew what they were talking about. I insisted his pedi refer us

someplace that would help us. Last week we went to Cranial Tech in CT,

an hour from home but well worth the drive. The nurse there agreed with

me, that my son should still be in therapy as well as in a DOCBand.

Thanks to everyone at Cranial Tech we are finally on the right path.

However, I am extremely worried that it is too late being that my son

is 10 months old and will be 11 months old by the time he actually gets

his band. Has anyone elses child begun treatment at this age? If so how

long was the band necassary and how successful was treatment? I am so

angry with my son's pediatrician. I feel he should have refered us to

Cranial Tech much sooner and to a pediatric pt rather than one who not

only rarely worked with children but one who only dealt with

torticollis once in an adult patient. I also feel guilty for not

standing up to him sooner and getting my son the help he needed sooner.

I am a first time mother who was blessed with twins. I counted on

our pediatrician to make the best decisions for my son. I should have

went with my motherly intuition.

[Guest guest]

Hi,

We have not gotten scans every month, and there has been error.  So, I

don't know the correction on a monthly basis.  We've seen about 5mm

improvement at level 3 and 4.5mm at level 5.  All this has been from

the back, since the asymmetry up front was very mild to begin with.  I

believe for an older baby with worse forehead asymmetry there is a lot

more potential for improvement in numbers.  (There is a case on this

group who started at 17 months and had big drops in numbers.)  We've

dropped about 3.5% in brachy.  We started at 7-8mm asymmetry and almost

87% brachy, so our numbers were mild.  Visually, the ortho said

was more moderate.  (His back right and side looked fairly bad.)  Now

's number are borderline normal at level 3.  Visually he is very

mild with most the remaining plagio up high.  's improvement was

very slow and fairly steady from 12 to around 20 months.  If anything,

there was a slight acceleration after we started with an osteopath at

about 16.5 months.  About 20 months we noticed a slow down. 

's head is still improving at past 21 months, but extremely

slowly.  Just today 's chiro said it was the first time she did not

feel a ridge at the suture on the upper right side.  (We visited her

almost weekly since was diagnosed at almost 12 months.)  It is

behind this suture where 's remaining flat area is.  Last week the

osteopath said 's head felt better internally.  The theory is now

's head is free to grow more symmetrical.  I believe that for some

cases, the key is combining the right alternative treatments with the

helmet.   For other cases, alternative treatments may not be as

necessary or effective. 

Good luck,

Kathy, past 21 months, treating plagio since 12 months

 

Parnis wrote:

 

Hi Kathy,

Feel good about yourself that you are doing the best for

your son now and that you always did -- it's not your fault you weren't

an expert at Plagiocephaly.

 

If you don't mind sharing, could you tell us the

correction you've seen, maybe month by month? I think we all meet Moms

with older kids who need correction and I'd love to be able to give

them real numbers on what can be done. It breaks my heart to say

nothing if those sweet babies can get better.

 

 

Hi everyone. My 10 month old son, twin a, has had

torticollis since birth which has caused plagio. From birth I noticed

that the entire left side of his face is anterior to the left. His

pediatrician acknowleged his condition but wanted to "wait things out"

to see if he outgrew it. At around 5 months, only after I kept asking

questions, his pediatrician finally refered him to a physical

therapist. He went to pt once a week, for a total of 7 sessions before

his therapist told me "there is nothing more we can do for him, he will

outgrow it as he begins to walk and has more control over his own

body". After researching torticollis a great deal I learned that

neither his pedi or pt knew what they were talking about. I insisted

his pedi refer us someplace that would help us. Last week we went to

Cranial Tech in CT, an hour from home but well worth the drive. The

nurse there agreed with me, that my son should still be in therapy as

well as in a DOCBand. Thanks to everyone at Cranial Tech we are finally

on the right path. However, I am extremely worried that it is too late

being that my son is 10 months old and will be 11 months old by the

time he actually gets his band. Has anyone elses child begun treatment

at this age? If so how long was the band necassary and how successful

was treatment? I am so angry with my son's pediatrician. I feel he

should have refered us to Cranial Tech much sooner and to a pediatric

pt rather than one who not only rarely worked with children but one who

only dealt with torticollis once in an adult patient. I also feel

guilty for not standing up to him sooner and getting my son the help he

needed sooner. I am a first time mother who was blessed with twins. I

counted on our pediatrician to make the best decisions for my son. I

should have went with my motherly intuition.

[Guest guest]

My pediatrician kept telling us my son's head would start rounding out on its own once he started sitting up, etc. I wish so much he would have sent us at 6 months, just so we could have started earlier. Looking back I feel so naive about the whole thing, I just listened to him. Good for you on staying persistent.I try not to beat myself up though, and just realize I'm doing the best thing for my son that I can now. Finally at his 9 month check up my ped sent us since his head was staying flat in the back. He got his DOC band when he was a week over 10 months and he's had it almost 5 weeks now. There has already been some improvement. I know since we started a little later he'll have to wear it a little longer (and probably need a second one). We were told probably around 6 months total. I know it will be worth it when we're done. Good luck! --- On

Thu, 3/11/10, Crasilli <jsilli@...> wrote:From: Crasilli <jsilli@...>Subject: (unknown)Plagiocephaly Date: Thursday, March 11, 2010, 12:26 AM

Hi everyone. My 10 month old son, twin a, has had torticollis since birth which has caused plagio. From birth I noticed that the entire left side of his face is anterior to the left. His pediatrician acknowleged his condition but wanted to "wait things out" to see if he outgrew it. At around 5 months, only after I kept asking questions, his pediatrician finally refered him to a physical therapist. He went to pt once a week, for a total of 7 sessions before his therapist told me "there is nothing more we can do for him, he will outgrow it as he begins to walk and has more control over his own body". After researching torticollis a great deal I learned that neither his pedi or pt knew what they were talking about. I insisted his pedi refer us someplace that would help us. Last week we went to Cranial Tech in CT, an hour from home but well

worth the drive.

The nurse there agreed with me, that my son should still be in therapy as well as in a DOCBand. Thanks to everyone at Cranial Tech we are finally on the right path. However, I am extremely worried that it is too late being that my son is 10 months old and will be 11 months old by the time he actually gets his band. Has anyone elses child begun treatment at this age? If so how long was the band necassary and how successful was treatment? I am so angry with my son's pediatrician. I feel he should have refered us to Cranial Tech much sooner and to a pediatric pt rather than one who not only rarely worked with children but one who only dealt with torticollis once in an adult patient. I also feel guilty for not standing up to him sooner and getting my son the help he needed sooner. I am a first time mother who was blessed with twins. I counted on our pediatrician to make the best decisions for my son. I should have went with my motherly

intuition.

[Guest guest]

So many of us have the same story about not being given good info from our

pediatricians. Mine even told us, " Well, it will probably just always be like

this. " Once you get that helmet on him I think you'll feel great relief and not

so much guilt. I think most of us have had those feelings of guilt, but you

just can't let it consume you. Focus on the fact that you're taking proactive

measures now, and that you WILL see improvement!

Correction from the band depends on the baby's growth, no matter how old. We've

gotten really lucky in that department. My son got his DOCband at one week shy

of 9 months old, and I was discouraged to be getting a " late " start as well.

But he has grown considerably and consistently during his 10 weeks in the

band--much more than is expected for his age. Even though he started at severe,

with all this growth in the band he is already down into the mild range. We

expect to graduate in 4-6 weeks from now after having just one band. So even if

your child is older, he could still have some good growing to do, and if he does

it once he's in the band, he'll get great correction (especially if he's

starting out at mild or moderate)! Did the CT people show you before and after

photos of babies your son's age? Even at a year old, so many get really great

results.

Mom to , 11 months old, DOCband since 12/29

>

> From: Crasilli <jsilli@...>

> Subject: (unknown)

> Plagiocephaly

> Date: Thursday, March 11, 2010, 12:26 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi everyone. My 10 month old son, twin a, has had torticollis since

birth which has caused plagio. From birth I noticed that the entire left side

of his face is anterior to the left. His pediatrician acknowleged his condition

but wanted to " wait things out " to see if he outgrew it. At around 5 months,

only after I kept asking questions, his pediatrician finally refered him to a

physical therapist. He went to pt once a week, for a total of 7 sessions before

his therapist told me " there is nothing more we can do for him, he will outgrow

it as he begins to walk and has more control over his own body " . After

researching torticollis a great deal I learned that neither his pedi or pt knew

what they were talking about. I insisted his pedi refer us someplace that would

help us. Last week we went to Cranial Tech in CT, an hour from home but well

worth the drive.

> The nurse there agreed with me, that my son should still be in therapy as

well as in a DOCBand. Thanks to everyone at Cranial Tech we are finally on the

right path. However, I am extremely worried that it is too late being that my

son is 10 months old and will be 11 months old by the time he actually gets his

band. Has anyone elses child begun treatment at this age? If so how long was

the band necassary and how successful was treatment? I am so angry with my

son's pediatrician. I feel he should have refered us to Cranial Tech much sooner

and to a pediatric pt rather than one who not only rarely worked with children

but one who only dealt with torticollis once in an adult patient. I also feel

guilty for not standing up to him sooner and getting my son the help he needed

sooner. I am a first time mother who was blessed with twins. I counted on

our pediatrician to make the best decisions for my son. I should have went with

my motherly

> intuition.

>

[Guest guest]

Thank you to everyone who has commented. You have made me feel much better and more optomistic that can still achieve a good outcome at his age. , CT did not show us pictures of other children his age nor did they tell me the degree of his tilt or his plagio numbers. So far we have only gone for the initial consultation where they hand measured him. We go again this coming Friday for the computerized scan. I plan to ask them for this information at that visit.

[Guest guest]

Good luck to you! My son did cry quite a bit during the DSI, but at least it's

quick. He just didn't like all the strangers--he's very attached to Mom. It

would help if the baby is well-fed and well-rested when you go for that

appointment--a tip another mom on this forum gave me but I was unable to do very

well.

They should be able to tell you at his DSI what his measurements are based on

the hand measurements they took last time. Personally, I don't get too hung up

on the numbers. What I really like seeing is the visual progress of his head as

compared to the " headsicle " (the mold of his head they make based on the DSI).

It's amazing to see and feel the differences. I think it's possible to get

caught up in the numbers and lose perspective, so I'd say try to just focus on

what the head LOOKS like as time goes on. I think that's why CT doesn't measure

each time and doesn't provide detailed measurement reports from the DSI. If

you're a real numbers person they will do measurements for you at a regular

adjustment appointment if you request it, but typically they don't. I just

thought it was really encouraging to see those before and after pictures of

babies of all ages and see how well the band worked for them.

I mistakenly said in my post that my son is graduating in 4-6 weeks and I should

have said 2-4, which will be a total of 13-15 weeks (not that it matters much to

anyone else). Considering the severity he started at and his age, we're

thrilled.

>

> Thank you to everyone who has commented. You have made me feel much better and

more optomistic that can still achieve a good outcome at his age. ,

CT did not show us pictures of other children his age nor did they tell me the

degree of his tilt or his plagio numbers. So far we have only gone for the

initial consultation where they hand measured him. We go again this coming

Friday for the computerized scan. I plan to ask them for this information at

that visit.

>

[Guest guest]

Kraft explained to me that wheat, barley, rye and oats would be

called out in the ingredients.

From:

[mailto: ] On

Behalf Of Linden

Sent: Thursday, July 08, 2010 9:45 AM

Subject: [ ] (unknown)

I've heard that jet puffed are gf.

L²

[Guest guest]

My son was 7 weeks premature. Just PROM. he was taken to the nicu for an xray due to grunting. he cried like normal and i though he would be there overnight. he was there for 14 days due to them blowing out his lungs with too high of Cpap pressure. he had pnemothorax due to the blown lungs and so a chest tube and intubated and vented later. I cant tell you how angry I was that the hospital not only did this to my baby but that they took absoultely no responsibility for it. They said it always happens and that it wasnt their machine that blew his lungs. Anyways... When he was 3 months his head was very flat on the right side. Took him to our ped and he said oh dont worry about it. 4 months and 5 months go by and nothing by dr. finally I took him to antoher doc and he said get this babay in a

band. So went to cranial tech and fitted him. A week went by with the band and its just amazing, his head is perfect!From: amber harper <camber0087@...>Subject: (unknown)Plagiocephaly Date: Wednesday, October 6, 2010, 6:11 AM

I cannot believe how your inlaws are treating you. Dont they respect that you gave birth to them and they are you children? Do they see their head shape and think anything is wrong? if its slight, they may think that it will go away on its own. If its drastic I cant imagine any grandparent would want their grandbabies to go around with funky heads. Im very sorry for your situation and can t imagine how frustrating it would be. I dont know what I would do, maybe sit them down in all seriousness and explain why you put them in the helmets and sincerely listen to their side too, as we all know, there are two sides to every story and hopefullly they can see that you are just trying to help your babies bc you all love them and want the best for them. Chans mommydoc band graduate 5 months to 8

months dec

90

[Guest guest]

Awww, Amber that is horrible. I've never heard of a hospital routinely blowing up kid's lungs. Mine was 6w premature and also had to have the lung meds and cpap vent for over 2 weeks and no lung was "blown". I'd be livid. Poor baby :(Kim

[Guest guest]

I'm sorry no one responded. I myself have never heard of it. I have only been on

steroids 4 years and trying to get off them. I have also only had asthma 4

years. I can't even get pulm to scope me because of the fear of bronchospams.

Tricia

Sent via BlackBerry from T-Mobile

-----Original Message-----

From: Joy VanSleet <jclutterbuster@...>

Sender:

Date: Thu, 16 Dec 2010 11:27:45

< >

Reply-

Subject: [ ] (unknown)

I'm a little disappointed no one responded to my post, I guess no one has even

heard of this newly approved fda procedure. I probably will not have it done,

having been on steroids for over 30 years I feel my skin is too brittle and my

airways would probably bleed from this procedure.

[Guest guest]

Hi Joy,

The did some of the studies in Montreal. I would be very hesitant because the

studies were tiny and no long term outcomes were done. I'm not even sure the

patients exhibited really amazing results (e.g. it was perhaps a statistical

significant change but nothing that changes clinical outcomes.) They excluded

any steroid-dependent patients from most studies too. Besides, bronchs are no

fun. That is just my two cents.

________________________________

From: Joy VanSleet <jclutterbuster@...>

Sent: Thu, December 16, 2010 2:27:45 PM

Subject: [ ] (unknown)

I'm a little disappointed no one responded to my post, I guess no one has even

heard of this newly approved fda procedure. I probably will not have it done,

having been on steroids for over 30 years I feel my skin is too brittle and my

airways would probably bleed from this procedure.

[Guest guest]

I have to say, I never got one rude comment or laughing from a stranger while my son was in his band. Perhaps because he was a baby and no one would do that to a baby? Or perhaps I didn’t notice because I was too busy wrangling my other two kids that were with me? In any case, it didn’t happen. I did get the curious questions about what the band was for and that gave me a chance to briefly educate people about what plagio was and how we were correcting the shape of my son’s head. For my other children, I took the baby to school on show and tell day and explained to the kids what the helmet was for. I also had a small book that I received from Orthomerica that I read to the kids called “My Brother has a Crooked Head”. This helped answer their questions before it even became an issue. The only one odd comment I got was from a lady who thought my son was in the band for epilepsy and wanted to discuss with me alternatives to prescription anti-seizure medicine. Hope this helps! MollyNovato, CaliforniaNicolas, 5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06, Graduate!, 8, 11 From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Leah BorskiSent: 14 February 2011 9:02 AMplagiocephaly Subject: (unknown) I am curious to know how some of you have dealt with the social aspect of helmet therapy. After talking to a very wise friend, I agree that I should neither be confrontational and rude when responding to strangers' staring, laughing, etc., nor passive in allowing people to make fun of my daughter. I also have a 5-year-old son who is pretty much always with me, and I am trying to set a good example for him. I don't want to teach him to lash out at people who are ignorant enough to make fun of a baby in a helmet, but I also don't want him to learn that he has to accept people snickering and making fun of his sister for looking different. I'm not sure how to approach this. Most people are very nice and considerate, curious at most, but we had quite an unpleasant shopping experience the other day, and I need to be prepared for how to deal with it if that happens again. Also, have any of you had to deal with friends/relatives who are less than supportive about using the helmet? It's a lot easier for me, personally, to shrug off the opinion of a passerby whom I'll probably never see again than to deal with knowing that someone I considered a good friend seems to think I'm overreacting to the process of deciding whether to helmet or not (which I obviously have since decided to do, and I believe in my heart that I made the right decision more now than ever, because all of these rude and non-empathetic people I'm dealing with now would be the same kind of people who would have been making fun of my daughter later because of her funny-shaped head.) Any suggestions or input would be greatly appreciated.

[Guest guest]

I've never had anyone say anything rude to us in public. Only children stare because they are curious. When people see I am friendly they will ask and I tell them it's just reshaping her head no biggie. Many tell her what a cool helmet or that one is so pretty! Or if they have a sibling with a helmet they've gotten so excited and happy to see her and want to play with her saying she's a twin to their baby sister. My mother in law thinks it's pointless and points out how flat her own daughters head is... even had me go feel it and says she's just fine and none of us are perfect. That same daughter tells me she has to wear her hair up in certain ways with her ponytail to disguise her flat spot. ly, my head is perfect! Her dad's head is perfect. I don't know where she gets the idea everyone's

head is severely lopsided. I can tell her now 40 year old daughter is still pretty self conscious about it. She (mil) gave her a bath when babysitting and left her helmet off the whole day. I'm not mad since she only sees her twice a year so it won't ruin her or anything. Fortunately, she has me as a mom From: "Foley, Molly" <mafoley@...>Plagiocephaly Sent: Mon, February 14, 2011 10:09:44 AMSubject:

RE: (unknown)

I have to say, I never got one rude comment or laughing from a stranger while my son was in his band. Perhaps because he was a baby and no one would do that to a baby? Or perhaps I didn’t notice because I was too busy wrangling my other two kids that were with me? In any case, it didn’t happen. I did get the curious questions about what the band was for and that gave me a chance to briefly educate people about what plagio was and how we were correcting the shape of my son’s head. For my other children, I took the baby to school on show and tell day and explained to the kids what the helmet was for. I also had a small book that I received from Orthomerica that I read to the kids called “My Brother has a Crooked Headâ€. This helped answer their questions before it even became an issue. The only one odd

comment I got was from a lady who thought my son was in the band for epilepsy and wanted to discuss with me alternatives to prescription anti-seizure medicine. Hope this helps! MollyNovato, CaliforniaNicolas, 5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06, Graduate!, 8, 11 From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Leah BorskiSent: 14

February 2011 9:02 AMplagiocephaly Subject: (unknown) I am curious to know how some of you have dealt with the social aspect of helmet therapy. After talking to a very wise friend, I agree that I should neither be confrontational and rude when responding to strangers' staring, laughing, etc., nor passive in allowing people to make fun of my daughter. I also have a 5-year-old son who is pretty much always with me, and I am trying to set a good example for him. I don't want to teach him to lash out at people who are ignorant enough to make fun of a baby in a helmet, but I also don't want him to learn that he has to accept people snickering and making fun of his sister for looking

different. I'm not sure how to approach this. Most people are very nice and considerate, curious at most, but we had quite an unpleasant shopping experience the other day, and I need to be prepared for how to deal with it if that happens again. Also, have any of you had to deal with friends/relatives who are less than supportive about using the helmet? It's a lot easier for me, personally, to shrug off the opinion of a passerby whom I'll probably never see again than to deal with knowing that someone I considered a good friend seems to think I'm overreacting to the process of deciding whether to helmet or not (which I obviously have since decided to do, and I believe in my heart that I made the right decision more now than ever, because all of these rude and non-empathetic people I'm dealing with now would be the same kind of people who would have been making fun of my daughter

later because of her funny-shaped head.) Any suggestions or input would be greatly appreciated.

[Guest guest]

You have to laugh at things in life, so I say come up with a witty response and then just politley explain what the band does. You will find that most people are just curious or may be asking for their own benefit out of concern for their own child. Don't worry about it. I have not encountered one person who said anything negative. Most people were very polite and commented on how cute she was and loved the decorations on the band. Good luck.

Plagiocephaly From: mafoley@...Date: Mon, 14 Feb 2011 10:09:44 -0800Subject: RE: (unknown)

I have to say, I never got one rude comment or laughing from a stranger while my son was in his band. Perhaps because he was a baby and no one would do that to a baby? Or perhaps I didn’t notice because I was too busy wrangling my other two kids that were with me? In any case, it didn’t happen. I did get the curious questions about what the band was for and that gave me a chance to briefly educate people about what plagio was and how we were correcting the shape of my son’s head. For my other children, I took the baby to school on show and tell day and explained to the kids what the helmet was for. I also had a small book that I received from Orthomerica that I read to the kids called “My Brother has a Crooked Head”. This helped answer their questions before it even became an issue. The only one odd comment I got was from a lady who thought my son was in the band for epilepsy and wanted to discuss with me alternatives to prescription anti-seizure medicine.

Hope this helps!

Molly

Novato, California

Nicolas, 5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06, Graduate!

, 8

, 11

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Leah BorskiSent: 14 February 2011 9:02 AMplagiocephaly Subject: (unknown)

I am curious to know how some of you have dealt with the social aspect of helmet therapy. After talking to a very wise friend, I agree that I should neither be confrontational and rude when responding to strangers' staring, laughing, etc., nor passive in allowing people to make fun of my daughter. I also have a 5-year-old son who is pretty much always with me, and I am trying to set a good example for him. I don't want to teach him to lash out at people who are ignorant enough to make fun of a baby in a helmet, but I also don't want him to learn that he has to accept people snickering and making fun of his sister for looking different. I'm not sure how to approach this. Most people are very nice and considerate, curious at most, but we had quite an unpleasant shopping experience the other day, and I need to be prepared for how to deal with it if that happens again.

Also, have any of you had to deal with friends/relatives who are less than supportive about using the helmet? It's a lot easier for me, personally, to shrug off the opinion of a passerby whom I'll probably never see again than to deal with knowing that someone I considered a good friend seems to think I'm overreacting to the process of deciding whether to helmet or not (which I obviously have since decided to do, and I believe in my heart that I made the right decision more now than ever, because all of these rude and non-empathetic people I'm dealing with now would be the same kind of people who would have been making fun of my daughter later because of her funny-shaped head.)

Any suggestions or input would be greatly appreciated.

[Guest guest]

I also have never had anyone be rude to me about the helmet. In fact alot of the time I completely forget he has it now when we go out. I sometimes notice people looking at it, but I think thats more out of curiosity than rudeness or them laughing at him.

People have often asked me what it is for and have seemed quite interested in it. Its funny, its my husband that really wanted him to get the helmet, but its him that wants to take if off him sometimes when we go to the supermarket etc. \

The only thing that I sometimes feel a little defensive over is when friends of mine say stuff like " well I never noticed anything wrong with his head " and I kinda feel they are suggesting we have paid £2000 we shouldn't have to and its all a con. But I just say to them that we weighed up all the options and looked at the fact that if it didn't get better we couldn't turn back time helmet him, so we would proceed with it now. Overall though everyone has been very supportive about it (Even my mum - who is usually the first to be sceptical about this sort of thing, agreed we should get it.)

I would suggest any friends or family that do not agree with the helmet you should maybe give them some literature to read on the subject, and explain that you have research it, and thought about it a great deal, and that is what you believe is best for your child. Hopefully even if they don't necessarily agree with your decision they will respect it, and support you.

On 16 February 2011 14:55, shannon_pecinich <shannon.pecinich@...> wrote:

 

I've never had anyone in public be rude to me, but I did have one woman in 's one day say " OH what a cute helmet! Do you just put him in it to protect him? " hahaha...I just laughed very nicely and explained what it was for and that nothing was wrong with him, we are just fixing his flat little head. She said it was super cute and moved along with her shopping. We were at brunch on Sunday and people were staring at us, I felt a little uncomfortable, but I got over it pretty quickly. I was so worried about the staring and the comments when we started the Doc Band. But, I'm over it now. I do have a situation though where my sister is really unsupportive. She laughs and shakes her head when she sees him. She says " I just don't understand " . I keep telling her she doesn't have to understand. It's not her money or her baby. She shuts up pretty quickly after that.

Good luck!

New to the Plagio Doc Band

Son Connor has been in it since Jan 25th 2011

>

> I am curious to know how some of you have dealt with the social aspect of helmet therapy.  After talking to a very wise friend, I agree that I should neither be confrontational and rude when responding to strangers' staring, laughing, etc., nor passive in allowing people to make fun of my daughter.  I also have a 5-year-old son who is pretty much always with me, and I am trying to set a good example for him.  I don't want to teach him to lash out at people who are ignorant enough to make fun of a baby in a helmet, but I also don't want him to learn that he has to accept people snickering and making fun of his sister for looking different.  I'm not sure how to approach this.  Most people are very nice and considerate, curious at most, but we had quite an unpleasant shopping experience the other day, and I need to be prepared for how to deal with it if that happens again.

>  

> Also, have any of you had to deal with friends/relatives who are less than supportive about using the helmet?  It's a lot easier for me, personally, to shrug off the opinion of a passerby whom I'll probably never see again than to deal with knowing that someone I considered a good friend seems to think I'm overreacting to the process of deciding whether to helmet or not (which I obviously have since decided to do, and I believe in my heart that I made the right decision more now than ever, because all of these rude and non-empathetic people I'm dealing with now would be the same kind of people who would have been making fun of my daughter later because of her funny-shaped head.)

>  

> Any suggestions or input would be greatly appreciated.

>