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I am so sorry to hear that your first band was a problem. You can feel

safe with CT, they have an excellent rep. I used CT for my son and

could not be happier. You can check out his pictures and our story at

his website. www.mybandebaby.typepad.com When you get a chance if you

would share your story about the first band it would help others and

give feedback about a location someone might be thinking about using.

CAROLG

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>

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Hi,

Welcome to the group! We're happy to have you.

You're not the only member here whose baby had a bad band. I'm sorry

you had to go through that. :-( I'm positive you andyour neuro will be

very happy w/his DOCband. Let us know how the fitting goes on the 1st.

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>

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Hi,

Welcome to the group! We're happy to have you.

You're not the only member here whose baby had a bad band. I'm sorry

you had to go through that. :-( I'm positive you andyour neuro will be

very happy w/his DOCband. Let us know how the fitting goes on the 1st.

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>

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Andi,My dd got her DOC Band shortly before turning 9 mo. She had a mild/moderate case of plagio. You can see her before and after pictures here. Her name is Cece. Her pictures are listed below our son Dane's.

I would really recommend you get Shaina an active band at this age. Active bands are the DOC Band, STARband and Hanger bands.

You should have gotten some information on two different active bands when you joined the group. If not click here. The information on the STARband will be similar to Hanger. You will need to interview the orthotist to ensure he is knowledgeable and experienced.

Click here to see a list of PA providers our members went to. If there is a parental contact listed drop them a line to get a reference.

You can also click here to get DOC Band clinic locations. Cranial Technologies offers free consulations.

Good luck and keep us posted :)

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

>> Hi,> My name is Andi. I am married and I have 2 children, 2 1/2 and > Shaina 9mos.> At 4 mos shaina was diagnosed with torticollis and we have been doing > stretching exercises since then and we are getting a pt evaluation > today. As far as the plagio goes, it just became noticeable at her > 9mos appt and we saw a neurosurgeon who has given us the option of > getting her fitted for a helmet. We are agonizing over what to do.> Has anyone had a child fitted for a helmet at 9mos.? The dr said that > many times this just works itself out.> Any thoughts would be greatly appreciated.> Thanks,> andi> PA>

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Andi,My dd got her DOC Band shortly before turning 9 mo. She had a mild/moderate case of plagio. You can see her before and after pictures here. Her name is Cece. Her pictures are listed below our son Dane's.

I would really recommend you get Shaina an active band at this age. Active bands are the DOC Band, STARband and Hanger bands.

You should have gotten some information on two different active bands when you joined the group. If not click here. The information on the STARband will be similar to Hanger. You will need to interview the orthotist to ensure he is knowledgeable and experienced.

Click here to see a list of PA providers our members went to. If there is a parental contact listed drop them a line to get a reference.

You can also click here to get DOC Band clinic locations. Cranial Technologies offers free consulations.

Good luck and keep us posted :)

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

>> Hi,> My name is Andi. I am married and I have 2 children, 2 1/2 and > Shaina 9mos.> At 4 mos shaina was diagnosed with torticollis and we have been doing > stretching exercises since then and we are getting a pt evaluation > today. As far as the plagio goes, it just became noticeable at her > 9mos appt and we saw a neurosurgeon who has given us the option of > getting her fitted for a helmet. We are agonizing over what to do.> Has anyone had a child fitted for a helmet at 9mos.? The dr said that > many times this just works itself out.> Any thoughts would be greatly appreciated.> Thanks,> andi> PA>

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Hi Andi,

Welcome to the group! I see has everything covered. :-)

I just wanted to add that MOST babies DON'T round out on their own.

The window of opportunity to correct plagio isn't a big one. It's now

or never. Good luck making your decision, let us know what you decide.

Take care,

-- In Plagiocephaly , " Andi " <andi95msu@...> wrote:

>

> Hi,

> My name is Andi. I am married and I have 2 children, 2 1/2 and

> Shaina 9mos.

> At 4 mos shaina was diagnosed with torticollis and we have been doing

> stretching exercises since then and we are getting a pt evaluation

> today. As far as the plagio goes, it just became noticeable at her

> 9mos appt and we saw a neurosurgeon who has given us the option of

> getting her fitted for a helmet. We are agonizing over what to do.

> Has anyone had a child fitted for a helmet at 9mos.? The dr said that

> many times this just works itself out.

> Any thoughts would be greatly appreciated.

> Thanks,

> andi

> PA

>

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Hi Andi,

Welcome to the group! I see has everything covered. :-)

I just wanted to add that MOST babies DON'T round out on their own.

The window of opportunity to correct plagio isn't a big one. It's now

or never. Good luck making your decision, let us know what you decide.

Take care,

-- In Plagiocephaly , " Andi " <andi95msu@...> wrote:

>

> Hi,

> My name is Andi. I am married and I have 2 children, 2 1/2 and

> Shaina 9mos.

> At 4 mos shaina was diagnosed with torticollis and we have been doing

> stretching exercises since then and we are getting a pt evaluation

> today. As far as the plagio goes, it just became noticeable at her

> 9mos appt and we saw a neurosurgeon who has given us the option of

> getting her fitted for a helmet. We are agonizing over what to do.

> Has anyone had a child fitted for a helmet at 9mos.? The dr said that

> many times this just works itself out.

> Any thoughts would be greatly appreciated.

> Thanks,

> andi

> PA

>

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hi angela and welcome. is ian the only child you are raising? What kind of

medicine was he taking? has he had any testing done? what do you think is wrong

with him? what was the medication for? ian is lucky to have a grandma like

you. charlotte henry

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Hi and welcome,

My first question is how old is Ian now? Since you mention up to

first grade I'm guessing he is either 6 or 7. Please also let us

know what state or country you live in so we can see if we can find

you some local support.

There are a few things that stand out to me that may or may not have

occurred to the doctors who diagnosed your grandson with ADHD and

medicated him to where it " drugged him to the point it wanted to

make you cry " Please clarify on the following if you have a chance:

He wasn't talking until he was 4 and a half. At that point and now

does he talk fine? Can you give an example of how he communicates?

He's still schooled as if he is developmentally delayed? Do you

mean he is schooled in all learning disabled classes in the public

school or out of school placement in a developmental school? If so

what does that mean? Is he schooled with mentally retarded

children? Do they view him this way? If this is the case I so

agree with your question " WHY??? "

Is Ian still on medication? What type of doctor prescribed the

medication? Was it a pediatric neurologist or neurodevelopmental

pediatrician (neuroMD) or was it a psychiatrist? If he has not been

taken for a neuroMD evaluation I highly advise it- and what about a

private speech evaluation even if all in the school believe he is

talking fine now. Since they consider him developmentally delayed

in first grade (soft way of letting you know what they will classify

him as by 3rd grade since the writing is on the wall already) they

probably don't expect him to use sophisticated language. If he for

example has apraxia one doesn't resolve from that -one overcomes it

by continuing to expand what is in the motor memory through

therapy.

How do you know he didn't have the understanding of back and forth

conversation -or was it that he just isn't able to have back and

forth conversation (which is different than not understanding)

I know if everyone assumed I didn't understand something that I did

I would be very angry. His " wild child " may have to do with his

frustrations of knowing what he wants to say and do -but not being

able to do it. Has that been considered? The average speech

impaired child has average IQ.

Ian's mom....do the MDs that prescribed the medications now

appreciate what feelings if any at all, her leaving him -even though

of course she left him with the best possible person in the world -

you - could have created for poor little Ian? Is your daughter

involved in his life as a loving mom from the outside? Is he

involved with his baby (brother/sister?) what about his father? Do

you all live close by where he can see them often? And BTW -all of

us as parents with special needs children can be stressed but this

is the first I've heard of a parent leaving their child -is your

daughter OK to raise the other children?! (Ian's doing better with

you after all)

No matter what it is clear that you love him very much -and at least

he has that. He needs to know that his mom and dad leaving him

isn't his fault -does he know that? It's every big brother and

sister's nightmare when a new baby is there that " Mommy and Daddy

won't love me anymore " ...but in most cases the child is reassured by

the Mom and Dad that they would never leave the child just because

the new baby is coming to the house. I'm sure what happened and the

timing and all wasn't viewed at the time as " leaving " -but to a

young child -a young child that has trouble communicating clearly on

top of it who's parents just had another baby and then left him -

that's probably how it's seen in his eyes. But I could be wrong.

Perhaps he 'is' developmentally delayed and doesn't view it that way.

I have a son with ADHD and even though a few years back a few

neuroMDs wanted to medicate him we were able to use fish oil therapy

and he is now in the 6th grade and an A and B student -but

brilliant. He tests in the 99 percentile.

First thing is to find out your grandson's receptive and cognitive

ability to get him in appropriate placement. This will help him

more than just about anything else you can do right now (in addition

to the love you already are providing him)

We can help you to help Ian as a group -I'm sure of it.

=====

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--Hi Charlotte!

Thank you for the post. Ian is the only child I am raising now. This is

a godsend as he needs one to one attention. He was on " Concerta " for

ADHD but is no longer and is doing much better. He was tested at the

University of Idaho through there special needs program I can't

remember the exact

title and was evaluated with a language delay. As to what was/is the

reason for his language delay....I have gone round and round. At this

point I'm still searching. I hope to get some insight from this group

that will help us to find the answer.

Thank you again for the post I need to hear from others who have been

down this road.

- In , stehn4@... wrote:

>

> hi angela and welcome. is ian the only child you are raising? What

kind of

> medicine was he taking? has he had any testing done? what do you

think is wrong

> with him? what was the medication for? ian is lucky to have a grandma

like

> you. charlotte henry

>

>

>

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Hi and welcome to the group! When someone says banding they mean

that the child will be wearing an active band, examples are DOCband,

Starband, and some Hanger bands. A helmet (passive) is made to be

symmetrical and then the baby's head grows into that symmetrical

shape. An active band holds in prominent areas so that as the head

grows, it grows in the path of least resistance (into the flat

areas). Now, passive helmets are usually worn by young babies (6 mo

or less) that still have a lot of growing to do. Older babies

benefit more from active bands. I apologize if this is confusing,

I'm quite tired.

Natasha

Atlanta

--- In Plagiocephaly , " Bobbi son " <bajblj@...>

wrote:

>

> is 7 1/2 months old and was just diagnosed with tort and

> plagio. She was one month early and frank breech. Almost every

pedo

> appt, I would ask about the shape of her head and I was always

told it

> will correct itself. One appt I told the Dr I noticed that one eye

is

> smaller than the other, she told me this is normal. Finally she

> referred me to Childrens Hosp in Seattle. Immediatly they saw the

tort

> and plagio. We have decided to go ahead with PT and helmet

therapy.

> The specialist at Childrens only mentioned helmet, nothing about

> banding. What is the difference? I am so happy to have this group

to

> discuss and vent to. I am pretty angry at her pedo for not seeing

this

> earlier and have been looking around for a different Dr.

>

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Hi and welcome to the group! When someone says banding they mean

that the child will be wearing an active band, examples are DOCband,

Starband, and some Hanger bands. A helmet (passive) is made to be

symmetrical and then the baby's head grows into that symmetrical

shape. An active band holds in prominent areas so that as the head

grows, it grows in the path of least resistance (into the flat

areas). Now, passive helmets are usually worn by young babies (6 mo

or less) that still have a lot of growing to do. Older babies

benefit more from active bands. I apologize if this is confusing,

I'm quite tired.

Natasha

Atlanta

--- In Plagiocephaly , " Bobbi son " <bajblj@...>

wrote:

>

> is 7 1/2 months old and was just diagnosed with tort and

> plagio. She was one month early and frank breech. Almost every

pedo

> appt, I would ask about the shape of her head and I was always

told it

> will correct itself. One appt I told the Dr I noticed that one eye

is

> smaller than the other, she told me this is normal. Finally she

> referred me to Childrens Hosp in Seattle. Immediatly they saw the

tort

> and plagio. We have decided to go ahead with PT and helmet

therapy.

> The specialist at Childrens only mentioned helmet, nothing about

> banding. What is the difference? I am so happy to have this group

to

> discuss and vent to. I am pretty angry at her pedo for not seeing

this

> earlier and have been looking around for a different Dr.

>

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Hi,

Welcome to the group! I just wanted to second everything Natasha has

already told you. Keep up posted on .

>

> is 7 1/2 months old and was just diagnosed with tort and

> plagio. She was one month early and frank breech. Almost every pedo

> appt, I would ask about the shape of her head and I was always told it

> will correct itself. One appt I told the Dr I noticed that one eye is

> smaller than the other, she told me this is normal. Finally she

> referred me to Childrens Hosp in Seattle. Immediatly they saw the tort

> and plagio. We have decided to go ahead with PT and helmet therapy.

> The specialist at Childrens only mentioned helmet, nothing about

> banding. What is the difference? I am so happy to have this group to

> discuss and vent to. I am pretty angry at her pedo for not seeing this

> earlier and have been looking around for a different Dr.

>

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Hi,

Welcome to the group! I just wanted to second everything Natasha has

already told you. Keep up posted on .

>

> is 7 1/2 months old and was just diagnosed with tort and

> plagio. She was one month early and frank breech. Almost every pedo

> appt, I would ask about the shape of her head and I was always told it

> will correct itself. One appt I told the Dr I noticed that one eye is

> smaller than the other, she told me this is normal. Finally she

> referred me to Childrens Hosp in Seattle. Immediatly they saw the tort

> and plagio. We have decided to go ahead with PT and helmet therapy.

> The specialist at Childrens only mentioned helmet, nothing about

> banding. What is the difference? I am so happy to have this group to

> discuss and vent to. I am pretty angry at her pedo for not seeing this

> earlier and have been looking around for a different Dr.

>

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Hi welcome! I also have a 15 year old with Asperger's. I also have a 9

year old on the spectrum and he is very empathetic with others. My older son

is

very isolative and self centered. He does fairly well socially. He is very

musically inclined and that has been a way for him to make and keep friends

pretty easily. My experience with Asperger's is that there aren't two people

that have the same exact presentation...they are all different. You will

find someone that has one or two things similar to your child, but not all.

Please stick around. We are a great group. Pam :)

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Thank you. I wish my 16 year daughter was more understanding with what he has.

Most of the time she thinks I am going to easy on him. Zach struggles most with

friends. It has been tough.

ppanda65@... wrote: Hi welcome! I also have a 15 year old with Asperger's.

I also have a 9

year old on the spectrum and he is very empathetic with others. My older son

is

very isolative and self centered. He does fairly well socially. He is very

musically inclined and that has been a way for him to make and keep friends

pretty easily. My experience with Asperger's is that there aren't two people

that have the same exact presentation...they are all different. You will

find someone that has one or two things similar to your child, but not all.

Please stick around. We are a great group. Pam :)

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Trish,

Your 15 yo has alot in common with my 16 yo Aspie. I used to worry about his

lack of friends, but found out that he does interact with a number of kids at

school. We live in a fairly small town, and most of the kids at his high school

already know him from elementary school. Last year, when he was a freshman, his

sp. ed. teacher got him into a lunch-time club for computer gamers. He is such

a whiz at anything computer-oriented, especially games, that kids now seek him

out for advice on gaming! Maybe there is something along those lines at your

son's school? It's amazing how kids attitudes will change about someone with a

disability when they find out that the kid they think of as a " retard " beats the

pants off of them at a video game!

Good luck!

drexel459 <trish459@...> wrote:

Hi All:

I want to introduce myself. I am the mother of a 15 year old boy who

falls somewhere on the autistic spectrum. He is very verbal, has

excellent decoding skills although very concrete comprehension

abilities, and his visual/spatial skills and math

understanding/reasoning are very poor although he has good rote

memory for math facts. In addition to all this, he is a sweet,

engaging and often funny young man. My husband and I, (I sound rather

like the Queen of England there), are very proud of him and how he

deals with what must be a very confusing environment.

He takes Ritalin LA and has been on some sort of Ritalin variation

since he was 5. It helps - at least we think it does. At one point,

around age 7, he was experiencing very high stress levels and started

having some difficulty with reality/fantasy and was put on Risperdal.

It did help but I was hugely anxious about side effects (although I

have to admit I loved the one where he took the medication at 8pm and

was out for the count by 9pm). He was weaned off the Risperdal after

about a year (and switching psychiatrists - long story) and has had

no further episodes that we felt warranted medication, although from

time to time, and always during stressful periods, we can see him

begin to fall through that trapdoor at which point, we haul him right

back. Up to now, we have been able to do so. If a time comes when we

can't, we would not hesitate to try the meds again.

My son has no friends though and doesn't seem to feel the lack of

them. We have had him in structured social groups but he doesn't seem

to quite fit in - even to the groups that are geared to children who

don't fit in. He is too impaired in some respects and too high

functioning in others. I know that this is probably a fairly common

pattern among individuals with Aspergers although I have never met

anyone - and I have met a large number of AS kids both low and high

functioning - that even remotely resembles my son. He is quite

empathetic but only in areas in which he himself has had some

experience, e.g., if someone is sick, he is very caring and

solicitous - brings drinks, blankets, makes sure everything is close

to hand etc.

Anyway, that is the story in a nutshell. I am looking forward to

participating in the list.

Regards,

Trish

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Maybe there is something along those lines at your son's school?

It's amazing how kids attitudes will change about someone with a

disability when they find out that the kid they think of as

a " retard " beats the pants off of them at a video game!

> Good luck!

>

Hi and all who have responded and made me feel so welcome:

I have actually attempted to suggest a video game/computer

game " thing " to the special ed people who organize these things at my

son's school. Or perhaps, going to the mall and the movies - teenage

stuff but with a little more supervision. Right now these " special

ed " events and clubs focus on crafts (not my son's cup of tea nor his

mother's come to think of it) and cooking. Their response when I

suggested computers was that they organized events where social

interaction could occur and I think the movie thing gets them

involved in " appropriateness " issues that they would rather not deal

with (and I can's say I really blame them on that score). I wanted to

cry and/or scream. I believe positive social interaction can occur

anywhere two or more individuals are engaged in something that is

pleasureable to them both - covers a wide variety of activities!

Anyway, after I stopped frothing at the mouth and exclaiming

that " this " was why I didn't get involved in " groups " for my son, I

have started to actively agitate for such a thing. We shall see.

Thanks again for the support and advice.

Trish

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In a message dated 2/13/2006 4:28:15 PM Eastern Standard Time,

trish459@... writes:

I have actually attempted to suggest a video game/computer

game " thing " to the special ed people who organize these things at my

son's school. Or perhaps, going to the mall and the movies - teenage

stuff but with a little more supervision. Right now these " special

ed " events and clubs focus on crafts (not my son's cup of tea nor his

mother's come to think of it) and cooking. Their response when I

suggested computers was that they organized events where social

interaction could occur and I think the movie thing gets them

involved in " appropriateness " issues that they would rather not deal

with (and I can's say I really blame them on that score). I wanted to

cry and/or scream. I believe positive social interaction can occur

anywhere two or more individuals are engaged in something that is

pleasureable to them both - covers a wide variety of activities!

Anyway, after I stopped frothing at the mouth and exclaiming

that " this " was why I didn't get involved in " groups " for my son, I

have started to actively agitate for such a thing. We shall see.

Games don't have to be just computer related. They could have a game night

and provide a variety of games for all sorts of tastes and abilities.

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

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>

> Hello I am a new member. I am the mother of a 4 year old with ASD.

We are currently GFCF and soy free. We are in the process of

changing digestive enzymes and are currently trying to eliminate yeast

overgrowth. Looking for advice in these areas. Thanks in advance!

Yeast info

http://www.danasview.net/yeast.htm

I use HNI enzymes here with great results

http://www.houstonni.com/

More enzyme info

http://www.enzymestuff.com/

Dana

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  • 2 weeks later...
Guest guest

welcome to group. I had it for 20+ glad to have you around.

doctorsharimeyers <doctorsharimeyers@...> wrote:

Hi.

I'm a new member and I just wanted to say hi to you all. I have had

lyme for 3 years. I'm sorry that we are all so sick, but glad that we

can share our thoughts this way.

shreveportlyme

(shari)

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Guest guest

Welcome Shari...I've had lyme for 15 years. I'm glad you can join

us and learn together. cooky

> Hi.

>

> I'm a new member and I just wanted to say hi to you all. I have

had

> lyme for 3 years. I'm sorry that we are all so sick, but glad that

we

> can share our thoughts this way.

>

> shreveportlyme

> (shari)

>

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Guest guest

Hi ,

Welcome to the group. Which CT do you go to? We go to Charlotte.

It may be a rough couple days but he will adjust. Most have no

issues and sleep in it the first night. Some take a few days. make

sure you are comfortable taking it off and on and know how to

clean. Ask about red spots - how dark, waht to do if they fade some

but not all the way, if they don't fade, if they fade after an hour,

etc.? it being a weekend you'll want to know what to do so he can

be in it as much as possible, not that he will have problems. also,

we can help some but it's best to get it straight from the ortho :)

I did both stickers and paint with my first daughter's band.

Started with paint and then just said phewy and switched to

stickers - less time investment, more options and I didn't get

bored. I have stuck to stickers with Kiersten's too.

na, DOC Grad Feb 04

Kiersten, DOC Band 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

--- In Plagiocephaly , " jprobst121 " <jprobst@...>

wrote:

>

> Hi everyone,

>

> My son, Jake, is 13 months old and will be getting his DOC band

> tomorrow. I am a nervous wreck but am hoping it will work out

from

> all the messages I have been reading. We should have done it

sooner

> but we tried repositioning and weren't ready to commit. I am

mostly

> worrried about sleeping and comfort. Do they seem to get used to

it -

> and how long will it take? This is going to be a rocky weekend.

Any

> advice would be appreciated.

>

> We will go to the craft store and investigate stickers. I heard

the

> acryllic paint can be hard to keep up, but does anyone think it

is

> worth the maintenance?

>

> Thanks to everyone for sharing their stories - it helps when you

feel

> like your child is the only one with this problem.

>

>

>

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Guest guest

Hi ,

Welcome to the group. Which CT do you go to? We go to Charlotte.

It may be a rough couple days but he will adjust. Most have no

issues and sleep in it the first night. Some take a few days. make

sure you are comfortable taking it off and on and know how to

clean. Ask about red spots - how dark, waht to do if they fade some

but not all the way, if they don't fade, if they fade after an hour,

etc.? it being a weekend you'll want to know what to do so he can

be in it as much as possible, not that he will have problems. also,

we can help some but it's best to get it straight from the ortho :)

I did both stickers and paint with my first daughter's band.

Started with paint and then just said phewy and switched to

stickers - less time investment, more options and I didn't get

bored. I have stuck to stickers with Kiersten's too.

na, DOC Grad Feb 04

Kiersten, DOC Band 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

--- In Plagiocephaly , " jprobst121 " <jprobst@...>

wrote:

>

> Hi everyone,

>

> My son, Jake, is 13 months old and will be getting his DOC band

> tomorrow. I am a nervous wreck but am hoping it will work out

from

> all the messages I have been reading. We should have done it

sooner

> but we tried repositioning and weren't ready to commit. I am

mostly

> worrried about sleeping and comfort. Do they seem to get used to

it -

> and how long will it take? This is going to be a rocky weekend.

Any

> advice would be appreciated.

>

> We will go to the craft store and investigate stickers. I heard

the

> acryllic paint can be hard to keep up, but does anyone think it

is

> worth the maintenance?

>

> Thanks to everyone for sharing their stories - it helps when you

feel

> like your child is the only one with this problem.

>

>

>

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