Re: New to all of this.

[Guest guest]

Tara-

How old is your son? My son was a little behind some of the kids

his age due to torticollis (tight neck muscle). He didn't roll over

until it was nearly resolved.

Dane wore his DOC Band from 5-8 months with fantastic results. It

never bothered him. There is some excessive sweating the first few

days, but you can help that by removing the band every couple of

hours and drying it and the head off. He actually slept better with

the band on. The week it came off, he started waking through the

night again! It really is quite a painless thing for most

children. The only thing that ever upset Dane was the casting.

Good luck on Thursday.

Dane's mom DOC Grad

> Hello, My name is Tara. I recently was told by my son's

pediatrician

> that he will need to see a cranifacial doctor and be fitted for a

> Helmet. I have no knowledge of this and was wondering how your

> children have made out with the helmet. We go for our first

> appointment on Thrusday with the Craniofacial doctor and in the

> morning we have our first visit with a Nuerologist. My son is

slow

> in sitting up or rolling over, with the results being that his

head

> is now flat in the back. Does anyone else have this problem and

if

> so how is your child doing after treatment? I really appreciate

and

> insight on this. Thanks so very much. Tara

[Guest guest]

Thank You so much for responding. My son will be 10 months old on

the 16th of September. Just today he is sitting a little better with

some pillows around him, but still doesn't have much muscle control

with his head, neck and back. I'm not quite sure what is wrong yet,

but we see the neurologist tomorrow morning. Hopefully this will be

a week of long awaited answers. It's great to know that your son did

well with the helmet. I've been looking at some pictures and

compared to some of the other children, 's head is so much more

flat than theirs. You could literally balance a can off the back of

his head. His head is in the 75th percentile for his age right now.

It's a pretty good size nogging! LOL How did you or some of the

other Mom's feel about the responce to people seeing your son with

the helmet on. I just know that people can be cruel and was hoping

that for the most part people understand. I guess this is becoming a

common thing because of all the recommendation of having babies sleep

on their backs now adays. I Live just outside of Boston. Are you or

any of the other girls familiar with Children's Hospital in Boston?

Well, Thank you so very much for your response. It's really great to

talk to someone else that is having or had the same problem. When I

was first told about this, I had no clue who to talk to or where to

go for information.. I didn't even know what Plagiocephaly was.

I've really learned a lot these past few weeks. Thanks again and

hope to hear from you soon.

Tara :0)

> > Hello, My name is Tara. I recently was told by my son's

> pediatrician

> > that he will need to see a cranifacial doctor and be fitted for a

> > Helmet. I have no knowledge of this and was wondering how your

> > children have made out with the helmet. We go for our first

> > appointment on Thrusday with the Craniofacial doctor and in the

> > morning we have our first visit with a Nuerologist. My son is

> slow

> > in sitting up or rolling over, with the results being that his

> head

> > is now flat in the back. Does anyone else have this problem and

> if

> > so how is your child doing after treatment? I really appreciate

> and

> > insight on this. Thanks so very much. Tara

[Guest guest]

Hi Tara,

Our sons are almost exactly the same age. Cole will be 10 months on

Sept. 20. He has been in his STARBand since June 18, and he has

adjusted well. People have reacted really well to it... at most I

have gotten a few questions, which I am happy to answer. Kids are

usually the first ones to ask about it (I think adults are afraid to

ask).

As far as the flattening goes, it sounds like your son might be

brachycephalic (is his flattening straight across entire back of the

head?). Cole is brachycephalic, and he has definitely been rounding

since he began helmet treatment. Good luck at your appointment, and

let us know how it goes.

Kia

> > > Hello, My name is Tara. I recently was told by my son's

> > pediatrician

> > > that he will need to see a cranifacial doctor and be fitted for

a

> > > Helmet. I have no knowledge of this and was wondering how your

> > > children have made out with the helmet. We go for our first

> > > appointment on Thrusday with the Craniofacial doctor and in the

> > > morning we have our first visit with a Nuerologist. My son is

> > slow

> > > in sitting up or rolling over, with the results being that his

> > head

> > > is now flat in the back. Does anyone else have this problem

and

> > if

> > > so how is your child doing after treatment? I really

appreciate

> > and

> > > insight on this. Thanks so very much. Tara

[Guest guest]

Tara,

Unfortunately your story is all too common. My doc brushed it off,

and I too am frustrated by time wasted when we could have begun

treatment earlier. Cole's case is pretty severe, and continued to

get worse instead of better over time (despite the fact that he was

sitting on his own at only 4 1/2 months). His flattening is due to

his favored sleep position... flat on the back of his head (although

I believe his head shape at birth made this position more comfortable

for him, and that his plagio actually began in-utero).

The most common reason for flattening is plagiocephaly, but it's

great to see a specialist and rule out cranio just to be sure. I'm

sure the doctor will reassure you that the flattening is positional,

although some doctors require a CT scan to be certain (we had one

done on Cole... it wasn't bad at all). Good luck at the appointment

and keep us posted.

Kia

> In a message dated 9/2/02 6:44:24 PM Central Daylight Time,

kia@v...

> writes:

>

>

> > Our sons are almost exactly the same age. Cole will be 10 months

on

> > Sept. 20.

>

> Oh that's great! See you said Cole has been in his band since

June. I kept

> asking his doc about it and should would brush me off. Until

finally I

> demanded to go in and see someone about it. Once I demanded to see

someone,

> then all of the sudden she said " Oh well I think your right. He

certainly

> doesn't have some flattening " HELLO!!!! This is what I was saying

all

> along. I just don't understand some of these doctors. Now he's

gonna be 10

> months old and I could have already been dealing with this and

getting it

> over with. Why does your son have the flattening? She seems to

think It is

> just because hasn't figured out how to sit up yet or roll over

and he

> puts his weight on his head a lot during the day? Which is what

brings me to

> the neurologist that I am seeing in the morning. Boy do I hope

that's all it

> is. Some of the possibility's that I've gotten from people are

scaring me to

> death. Well, I can't Thank You enough for replying to my post. I

am so

> happy that I have found other people that are going through the

same thing.

> It's so very helpful. Thanks a bunch and I hope to hear from you

soon. Lots

> of luck with your little man! :0)

> aTARAa

> s

> <A HREF= " http://hometown.aol.com/ruby07798/page1.html " >Welcome to

my World!</A>

[Guest guest]

HI Tara & welcome to our group!!!

Very happy you have found us. I see you've already gotten a couple

great replies & has offered great advice. Like she mentioned,

another member Ken's son Zack has recently rec'd a helmet for

Children's Hospital in Boston too (I think!), I'm sure he'll offer

you some local help.

Good luck at your Drs appt tomorrow. You can check out this website

www.plagiocephaly.org/support then click " questions for the Dr " -

there is a printable list of questions for drs, specialists &

orthotists that are very helpful to bring to these appts.. Will they

actually be casting your son for a helmet tomorrow, or will this be a

consultation appt only?

As for strangers reactions to the helmets/bands, my daughter wore 2

bands for a total of about 8 mos., yes we definitely rec'd our share

of stares, but those never bothered us much. I kept telling myself

that I'd probably stare too if I didn't know what the helmet was used

for, it's human nature. We rec'd just a few rude comments, nothing

horrible though. I found it easier to deal with stares and/or

comments than it would be to deal with my daughter crying her eyes

out at age 10 after kids were picking on her flat head, we all know

how tough it is growing up anyway, she didn't need that to worry

about too.

I don't think there are any studies that show plagio/brachy (as your

son sounds to have, flat on the back) can cause developmental delays,

although some believe it does.

I hope you get some answers at your appt tomorrow. Please let us

know how it goes - welcome again!!!

Debbie Abby's mom DOCGrad

MI

> Hello, My name is Tara. I recently was told by my son's

pediatrician

> that he will need to see a cranifacial doctor and be fitted for a

> Helmet. I have no knowledge of this and was wondering how your

> children have made out with the helmet. We go for our first

> appointment on Thrusday with the Craniofacial doctor and in the

> morning we have our first visit with a Nuerologist. My son is slow

> in sitting up or rolling over, with the results being that his head

> is now flat in the back. Does anyone else have this problem and if

> so how is your child doing after treatment? I really appreciate

and

> insight on this. Thanks so very much. Tara

[Guest guest]

Hi Tara, and welcome to the group! You have certainly come to the

right place, the parents here are absolutely awesome and are more

than happy to give advice! We have quite a few members who have gone

through Boston's Children Hospital, so I'm sure some of them will

chime in and share their experiences of the hospital and probably the

NOPCO helmet with you. (Ken, that's your cue!)

Both of my twins wore bands to correct flatness. Your son sounds to

have brachycephaly (flatness accross the back of the head, as opposed

to one side being flattened) My son Danny had a mild-to-moderate

case of brachy. He wasn't really too delayed, at least not enough

for me to be worried, especially since I had to take into

consideration their adjusted age (the twins were born a month

early). One thing that I think gets overlooked alot, is the fact

that these charts by which to check our babies against, are getting

out of date. Since babies are sleeping on their backs these days,

they are not developing the muscles in their upper bodies as quickly

as babies who sleep on their tummy. And for that reason alone,

babies are rolling over later, sitting up later, crawling later, and

eventually walking later. Anyway, the twins got their bands when

they were almost 8 months old. Both of them took to it right away,

and didn't need much time to adjust to their bands at all. Danny

wore his for 3 months, and Kaylie wore hers for 4.

The twins are now 2, and they are into *everything* and their heads

look great! I look back now, and I can remember being right where

you are, and how scary all of this can be. But I promise you, in the

grand scheme of things, plagiocephaly is a piece of cake! The time

while the twins wore their bands absolutley flew by!

There's a really good website with more info that you should check

out http://www.plagiocephaly.org/support

Good luck with the upcoming appointments, please keep us posted! And

again, welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello, My name is Tara. I recently was told by my son's

pediatrician

> that he will need to see a cranifacial doctor and be fitted for a

> Helmet. I have no knowledge of this and was wondering how your

> children have made out with the helmet. We go for our first

> appointment on Thrusday with the Craniofacial doctor and in the

> morning we have our first visit with a Nuerologist. My son is slow

> in sitting up or rolling over, with the results being that his head

> is now flat in the back. Does anyone else have this problem and if

> so how is your child doing after treatment? I really appreciate

and

> insight on this. Thanks so very much. Tara