Confused

January 14, 2009

There's not that much research do to a lack of a control group, but it's also a fairly recent wider spread issue. 20 years ago there was no back to sleep. Most kids slept on their tummys from birth so they never got in the habit of sleeping on one side of their head. Car seats and swings and all kinds of props that are now used commonly for kids didn't exist 40 years ago and weren't all that common until recently. Because kids in general spend a lot of time on their backs through sleeping and various props, flattening issues are more common. In another 30 years I think issues stemming from untreated plagio/brachey will be more evident.

Beyond looking at purely medical issues, cosmetically it's an issue depending on how severe. Is it bad enough they will have issues buying hats and helmets when they are older? What about ear assymetry? Is it bad enough they won't be able to buy sunglasses off the rack? I encourage you to look at boards and groups with adults that have plagio/brachey. Not that I needed more convincing at that point, but their experiences alone made me want to do what I can to help correct my daughter.

I think you are doing the right thing by banding. It's only a few months of inconvience now that they will never remember, and it will make a difference to them for the rest of their life ^_^

Elaine (twin A) 7 1/2 months old, 1 week in helmet #2

On Tue, Jan 13, 2009 at 3:29 PM, patty_USA <patty_usa@...> wrote:

I just spoke to our orthotist yesterday and he stated there is no research that proves a child with plagio will have medical related difficulties later on. When I asked my daughter's pediatrician recently what were the medical effects later on of a flat head she

said cosmetic only. I am confused as I do not want my daughter to wear the helmet if she doesn't medically need to. She has been wearing it for a month with no major issues and is a very easy going baby and doesn't mind it. However, I'm sure it's uncomfortable for

her and it is digging into her ear which the orthotist tried to fix again yesterday. Does anyone know of any concrete research that prooves wearing a helmet will help prevent headches, TMJ, developmental difficulties, etc. later on? We are going to have her

wear the helmet for a few months as I want to be proactive but why don't medical professionals seem to know anything about this? Our daughter's plagio is not severe but falls within the measurements of

needing a helmet. After hearing this from the orthotist yesterday and based on what her pediatrician says it makes me wonder if we're doing the right thing but since I haven't heard of any negative effects of wearing the helmet, I am going to have her keep wearing it

in hopes it does help. If anyone knows of any research could you please let me know. Thank you.Patty from Maine (near Binghamton), New York

January 14, 2009

As an aside, I can't get to any of the files in the new 'untreated plagio' section. I get this error on all of them " The requested document is not accessible. "

On Wed, Jan 14, 2009 at 8:58 AM, Lina Gabriev <lina.gabriev@...> wrote:

There's not that much research do to a lack of a control group, but it's also a fairly recent wider spread issue. 20 years ago there was no back to sleep. Most kids slept on their tummys from birth so they never got in the habit of sleeping on one side of their head. Car seats and swings and all kinds of props that are now used commonly for kids didn't exist 40 years ago and weren't all that common until recently. Because kids in general spend a lot of time on their backs through sleeping and various props, flattening issues are more common. In another 30 years I think issues stemming from untreated plagio/brachey will be more evident.

Beyond looking at purely medical issues, cosmetically it's an issue depending on how severe. Is it bad enough they will have issues buying hats and helmets when they are older? What about ear assymetry? Is it bad enough they won't be able to buy sunglasses off the rack? I encourage you to look at boards and groups with adults that have plagio/brachey. Not that I needed more convincing at that point, but their experiences alone made me want to do what I can to help correct my daughter.

I think you are doing the right thing by banding. It's only a few months of inconvience now that they will never remember, and it will make a difference to them for the rest of their life ^_^

Elaine (twin A) 7 1/2 months old, 1 week in helmet #2

On Tue, Jan 13, 2009 at 3:29 PM, patty_USA <patty_usa@...> wrote:

I just spoke to our orthotist yesterday and he stated there is no research that proves a child with plagio will have medical related difficulties later on. When I asked my daughter's pediatrician recently what were the medical effects later on of a flat head she

said cosmetic only. I am confused as I do not want my daughter to wear the helmet if she doesn't medically need to. She has been wearing it for a month with no major issues and is a very easy going baby and doesn't mind it. However, I'm sure it's uncomfortable for

her and it is digging into her ear which the orthotist tried to fix again yesterday. Does anyone know of any concrete research that prooves wearing a helmet will help prevent headches, TMJ, developmental difficulties, etc. later on? We are going to have her

wear the helmet for a few months as I want to be proactive but why don't medical professionals seem to know anything about this? Our daughter's plagio is not severe but falls within the measurements of

needing a helmet. After hearing this from the orthotist yesterday and based on what her pediatrician says it makes me wonder if we're doing the right thing but since I haven't heard of any negative effects of wearing the helmet, I am going to have her keep wearing it

in hopes it does help. If anyone knows of any research could you please let me know. Thank you.Patty from Maine (near Binghamton), New York

January 14, 2009

It is true that there are no conclusive studies. However there is some

suggestion of problems, and in my mind even the cosmetic reasons are

enough to band. Why have a misshapen head if you can fix it? To me it

is like braces. Maybe they will prevent TMJ later in life, but maybe

they'll just give you an attractive smile - which I think is a

completely valid goal. Do you really want a child to have a mishapen

head and asymmetric face if you can help it?

Other cultures do have a lot more history of back sleeping, but they

don't use swings, car seats etc for the most part.

-christine

sydney, 3 yrs, starband grad

>

> > I just spoke to our orthotist yesterday and he stated there is no

> > research that proves a child with plagio will have medical related

> > difficulties later on. When I asked my daughter's pediatrician

> > recently what were the medical effects later on of a flat head she

> > said cosmetic only. I am confused as I do not want my daughter to

> > wear the helmet if she doesn't medically need to. She has been

> > wearing it for a month with no major issues and is a very easy going

> > baby and doesn't mind it. However, I'm sure it's uncomfortable for

> > her and it is digging into her ear which the orthotist tried to fix

> > again yesterday. Does anyone know of any concrete research that

> > prooves wearing a helmet will help prevent headches, TMJ,

> > developmental difficulties, etc. later on? We are going to have her

> > wear the helmet for a few months as I want to be proactive but why

> > don't medical professionals seem to know anything about this? Our

> > daughter's plagio is not severe but falls within the measurements of

> > needing a helmet. After hearing this from the orthotist yesterday

> > and based on what her pediatrician says it makes me wonder if we're

> > doing the right thing but since I haven't heard of any negative

> > effects of wearing the helmet, I am going to have her keep wearing it

> > in hopes it does help. If anyone knows of any research could you

> > please let me know. Thank you.

> > Patty from Maine (near Binghamton), New York

> >

>

March 4, 2009

Hi Camino:

I was sorry to read you are feeling so bad and in such pain. I have

never been on a Biological drug, so I don't know how long it takes for

them to work.

I do know having a great Rheumy is so very important. I love mine, and

she has helped me so much. I do take the maximum doses of all my RA

meds. My flares are longer in between, and don't last as long. I am

very grateful for that.

I hope you get on the right meds. for you, and that you get some relief

very soon.

Have you called your Rheuny to tell him/her how much pain you are in

right now? Perhaps with a call you can get some stronger pain meds. to

help you through all this.

I don't know anything about Socail Security benefits. A lot of people

here sure do know lots about it.

Take care, and wishing you pain free days ahead.

Hugs,

Barbara

>

> been to my rhumey for a tear now. he has had me on embral,remicade and

> retuxen not to list all the other pills. none of it is helping and now

> wants to put me on orencia. my ra factor on my last visit was 1725.how

> long does it take to find a medicine to do something? or do i need to

> find a new rhumey? im feeling terible with all these meds. if i go

find

> a new doc does this effect my social socurity claim? thank you

>

April 13, 2010

I think the answer is no but Can you eat cheese if it does not have casien?

There is a cheese from & Everret that it does not have casien (made from

milk)

April 14, 2010

I'm a little confused. I went to and Everret's website and all their

cheese is made from cow's milk, which does have casein in it.

Robyn

________________________________

From: ashley <neidhardtashley@...>

Sent: Tue, April 13, 2010 5:09:15 AM

Subject: Confused

I think the answer is no but Can you eat cheese if it does not have casien?

There is a cheese from & Everret that it does not have casien (made from

milk)

September 16, 2010

Clarren helmet, perhaps? The nice thing about a passive helmet is

that you don't need to rely on any special clinical expertise, and

follow up will be less frequent. It is kind of second-class, though;

I'm surprised you got one in a major city. At what cost, may I ask?

Clara still goes through cycles of growth where the (moderate) plagio

looks better, then all of a sudden not. Growth seems to spiral

around the sutures, rather than everywhere at once.

So, if you want the plagio to get better, I'd stick with it. Who

cares how it looks, really, but I do imagine the chin strap is

particularly annoying. Distract him when it's bugging him, praise

him when it's not; I hope it gets easier for you.

--

Thad Launderville

town, VT

Clara age 2, STARband '10

September 17, 2010

I'm sorry you're having such a difficult time getting started, but I want you to

know that many babies don't like the helmet at first, and they do get used to

it. This is true for any kind of helmet. I personally would not recommend

wearing the helmet during the day only or only at home but not in public. The

helmet is meant to be used day and night, and at night it is very important

because it keeps pressure off the flat spot. I think it might also confuse your

baby and make him think if he cries he can take the helmet off. That might make

it take longer for him to get used to wearing the helmet. I think if you keep

using the helmet all the time, he will probably get used to it more quickly.

As for going out in public, I think people act oddly because they don't know

what to say. They are just curious. I found the best thing is to just explain

about the helmet right away when talking to people. If you see someone looking,

give them a smile, and they might come and ask about it or at least say hello to

your baby. If a child asks about it, and trust me they will, just smile and

explain about it in simple terms. " My baby has a crooked head, and his helmet is

going to fix it, like braces. " The more positive you act, the more comfortable

other people will be, and the less uncomfortable you will feel in public. Also,

as the other post said, the more positive you are, the better your baby will

accept the helmet. If you think it's " bad " , so will he, so smile big! Good luck

and keep us posted.

>

> My baby is 6 1/2 months old. We live in Toronto. Last week he got his helmet

at Sick Kids Hopsital.His helmet is different from the DOC bands or STARbands,

it looks more like a sport helmet, no openings on the top only 4 small holes,

and a chin strap.

> When we took him to Sick Kids Hospital the first time, the specialist said he

has mild positional plagiocephaly on the back right side of his head and in the

back. He said " it is your decision regarding the helmet, you can go with it or

keep repositioning him as his condition may improve just avaoiding lots of time

on his back and slleping on his sides " so we decided to go with the helmet as we

wanted TO BE SURE the flatness even it was " no very noticible " will be corrected

we didn't want to take the risk of just wait and see.

> Well since we startes the process fo his helmet until the day we got it we

kept putting him to sleep on his left side and avoided him laying on his back,

and holding most of the time when we went out (instead to be in the stroller of

carseat), it is hard work but we were able to do it.

> We saw LOTS of improvement just in the couple of weeks while waiting for his

helmet. We put his helmet on and he hates the chin strap and at times scream

when he put his helmet on. We want to be sure we are putting his helmet on

properly so we are going this Friday to see the specialist again to check if we

are doing it right, but we think our baby never is gonna like the chin strap.

> We are so confused now, we can say that the his head improved A LOT and there

is still a little bit of flatness but so much less than before. Does it mean it

will just improve if we keep positioning him?

> We went to a lot to get this helmet (stressful days and nights worrying,

borrowing money from parents, still waiting to hear from insurance). We told

some people about it a week before getting his helmet and we had a gattering and

almost everybody was staring at his head it was so upsetting and uncomfortable.

> We decided that we will try the helmet during the day as much as possible and

we think he will need to use it for a short time (hopefully) but we are worry

about night time as we think the strap really will bother him.

> We want to know if anybody know if he uses the helmet only during the day

(let's say between 8 to 10 hrs a day) will does the helmet still work? Will his

head get corrected?

> We are thinking that we will try to avoid taking him with his helmet at

gatherings as it is so uncomfortable when people stare at him.

> But we just want to do the VERY BEST for our baby so we are confused, we

thought he will adjust better to it but it seems he doesn't like it.

>

September 18, 2010

Isela, I know everybody is going to disagree with what I say but here is my story with my son. He was diagnosed with plagio at 2.5 mths. 10mm CI. We did the whole repositioning thing for 2.5 mths with no change in the 10mm. We banded with Hanger at 5 mths. I had a VERY difficult time getting my husband on board and after speaking with the folks up here that did not help things at home. Afterall, I am married to him and try to live in peaceful surroundings. Anyway, Trevor did wear it only part-time. The 8 hours a day that I was taking care of him while dad was at work. My husband would always take it off when he came home from work. I was so tired of arguing about it I finally just gave in with trying to talk to him about it and just let

him wear it when I was taking care of him, thinking that maybe we could get a little correction even with part-time use. Well, much to my surprise at 5 weeks of wear, his head grew 3cm (huge amt of growth) and his CI was down to 0mm. I don't know how and I will never be able to explain it but somehow part-time use did the job. He still has a little flatness on the back right side but nobody would ever notice it if they didn't know his history. His right sided forehead bossing looks wonderful, which is the main reason I wanted to band in the first place. He had another adjustment this week, after 2 months of wear and we are going to wear it for 1 more month to work on that flat spot then we will be done. I hope this helps you feel better that maybe part-time wear will help your baby until he gets used to it. Good Luck, we're dealing with teething right now and I know a fussy baby makes for a miserable

time. in NC

From: Isela Malaga <iselammj@...>Plagiocephaly Sent: Thu, September 16, 2010 11:01:30 AMSubject: CONFUSED

My baby is 6 1/2 months old. We live in Toronto. Last week he got his helmet at Sick Kids Hopsital.His helmet is different from the DOC bands or STARbands, it looks more like a sport helmet, no openings on the top only 4 small holes, and a chin strap.When we took him to Sick Kids Hospital the first time, the specialist said he has mild positional plagiocephaly on the back right side of his head and in the back. He said "it is your decision regarding the helmet, you can go with it or keep repositioning him as his condition may improve just avaoiding lots of time on his back and slleping on his sides" so we decided to go with the helmet as we wanted TO BE SURE the flatness even it was "no very noticible" will be corrected we didn't want to take the risk of just wait and see.Well since we startes the process fo his helmet until the day we got it we kept putting him to sleep on his left side and avoided him laying on his back, and holding most of

the time when we went out (instead to be in the stroller of carseat), it is hard work but we were able to do it.We saw LOTS of improvement just in the couple of weeks while waiting for his helmet. We put his helmet on and he hates the chin strap and at times scream when he put his helmet on. We want to be sure we are putting his helmet on properly so we are going this Friday to see the specialist again to check if we are doing it right, but we think our baby never is gonna like the chin strap.We are so confused now, we can say that the his head improved A LOT and there is still a little bit of flatness but so much less than before. Does it mean it will just improve if we keep positioning him? We went to a lot to get this helmet (stressful days and nights worrying, borrowing money from parents, still waiting to hear from insurance). We told some people about it a week before getting his helmet and we had a gattering and almost everybody was

staring at his head it was so upsetting and uncomfortable.We decided that we will try the helmet during the day as much as possible and we think he will need to use it for a short time (hopefully) but we are worry about night time as we think the strap really will bother him.We want to know if anybody know if he uses the helmet only during the day (let's say between 8 to 10 hrs a day) will does the helmet still work? Will his head get corrected? We are thinking that we will try to avoid taking him with his helmet at gatherings as it is so uncomfortable when people stare at him.But we just want to do the VERY BEST for our baby so we are confused, we thought he will adjust better to it but it seems he doesn't like it.

September 18, 2010

I second this. The first two weeks or so were rough for our twin boys (they

started a few weeks apart, so it was a long month! lol). But after that they get

pretty used to it. They sometimes fuss when you put it back on, but its short

lived, about as much fussing as goes on for diaper or clothing changes. Our

twins are 8.5mo old. Both my husband and I were initially worried about others

reactions, but you really do get used to it quickly. I try to smile at anyone I

see looking. I much prefer people and children asking questions, I feel we are

helping to educate people about plagiocephaly, but honestly, we don't get as

many stares as I thought we would. I would keep at it full time, because at with

the cost and what not, you want to achieve full results! Good luck!

> >

> > My baby is 6 1/2 months old. We live in Toronto. Last week he got his helmet

at Sick Kids Hopsital.His helmet is different from the DOC bands or STARbands,

it looks more like a sport helmet, no openings on the top only 4 small holes,

and a chin strap.

> > When we took him to Sick Kids Hospital the first time, the specialist said

he has mild positional plagiocephaly on the back right side of his head and in

the back. He said " it is your decision regarding the helmet, you can go with it

or keep repositioning him as his condition may improve just avaoiding lots of

time on his back and slleping on his sides " so we decided to go with the helmet

as we wanted TO BE SURE the flatness even it was " no very noticible " will be

corrected we didn't want to take the risk of just wait and see.

> > Well since we startes the process fo his helmet until the day we got it we

kept putting him to sleep on his left side and avoided him laying on his back,

and holding most of the time when we went out (instead to be in the stroller of

carseat), it is hard work but we were able to do it.

> > We saw LOTS of improvement just in the couple of weeks while waiting for his

helmet. We put his helmet on and he hates the chin strap and at times scream

when he put his helmet on. We want to be sure we are putting his helmet on

properly so we are going this Friday to see the specialist again to check if we

are doing it right, but we think our baby never is gonna like the chin strap.

> > We are so confused now, we can say that the his head improved A LOT and

there is still a little bit of flatness but so much less than before. Does it

mean it will just improve if we keep positioning him?

> > We went to a lot to get this helmet (stressful days and nights worrying,

borrowing money from parents, still waiting to hear from insurance). We told

some people about it a week before getting his helmet and we had a gattering and

almost everybody was staring at his head it was so upsetting and uncomfortable.

> > We decided that we will try the helmet during the day as much as possible

and we think he will need to use it for a short time (hopefully) but we are

worry about night time as we think the strap really will bother him.

> > We want to know if anybody know if he uses the helmet only during the day

(let's say between 8 to 10 hrs a day) will does the helmet still work? Will his

head get corrected?

> > We are thinking that we will try to avoid taking him with his helmet at

gatherings as it is so uncomfortable when people stare at him.

> > But we just want to do the VERY BEST for our baby so we are confused, we

thought he will adjust better to it but it seems he doesn't like it.

> >

>

September 20, 2010

This is me, Isela. I want to thank you so much to those who took their time to

read my post and replied to it.

What a wonderful group is this and feels so great to find support and

encoragment.

Our baby is wearing his helmet little by little, my husband and I are still

learing how to put it on him properly and this is what frustrates our boy the

most, moving the helmet many times on his head.

My son is sleeping during his nap right now for the 1st time and hopefully in

the next couple days we can get him to the point of wearing it at night. The

1st couple days were really tough but as we learn to put it on him and he gets

familar with the helmet it is getting easier.

His helmet is plain white so we are getting it decorated with vinyl decalls

(similar to what Vinyl Touch in Il does) this week and we are excited about it.

That will meke the process more enjoyable for him (we hope) at least when he

looks himself in the mirror.