Re: help

[Guest guest]

Hi Hillary,

I am so sorry that this is so frustrating for you. I know how overwhelming this

all can

be. When I first found this site I was on information overload for a couple of

weeks

myself. It absolutely is very frustrating when you get conflicting advice. If

you don't

feel right about advice you get please be sure to question it.

On the positive side, although I have not read all your posts, it sounds as

though your

son is quite mild. I think in these situations the ultimate decision is left up

to the

parent because it is probably o.k. to band and o.k. not to band, it is really

what is the

parents' comfort level with how their child looks. Some people choose to band

very

mild cases and some people choose not to band higher levels of severity. This

all can

be quite confusing because we really want a unanimous, definitive answer on what

to

do from the professionals we deal with and that often just does not happen.

I know you feel very frustrated and confused and upset right now. It is no fun

feeling

that way, especially when it is due to concern for your child. I am certain

that once

you ultimately decide what to do you will feel better. In the end it is your son

and

absolutely your decision to do what you feel is the correct thing to do. Try to

wade

through the conflicting advice and do what makes you feel o.k. Whatever you

decide

to do will not be the wrong thing.This doesn't have to be a quick decision

though.

There is nothing wrong with taking some time to let it all sink in. As all of us

who

have been through this process know, whether we decided to band or not, making

the decision truly is the most difficult part.

I'm so sorry to hear that you are feeling so badly tonight. You must be very

tired.

Please get some rest and give yourself a break from all this for a few days if

would

help. Hope you are feeling better tomorrow.

All the best,

Mark ('s dad)

> THANKS I THINK WE WONT DO ANYTHING AT THIS POINT UNTIL AT LEAST I AM

LESS CONFUSED BY ALL THE CONTRDICATION I AM GETTING FROM THE PED, CT AND

THE CRAINAL DR I AM TOTALLY LOST AT THIS POINT I DONT EVEN KNOW WHO TO

CONSULT ANYMORE I JUST THINK I WILL SIT AND WAIT AND HOPE ITS FOR THE BEST

I TYPCIALLY AM NOT VERY MEDICALLY ACTIVE I DONT TYPICALLY USE ALOT OF

ANTIBOTICS OR WHAT NOT I JUST DONT BELEIVE IN ALOT OF THINGS ANYMORE AND

TOO MANY DRS DONT SEEM TO REALLY KNOW WHICH IS THEIR HEAD AND WHICH IS

THEIR BUTTS I HAVE BEEN MISLEAD MEDICALLY MYENTIRE LIFE WASNT EVEN

PROPERLY DIGANOISED UNTIL ADULTHOOD AND I JUST SORT OF FED UP AT THIS

POINT, THE CT LADYSAID SHE DIDNT THINK HE WOULD RECEIVE MUCH BENIFIT SHE

DIDNT SAY ANY I AM NOT SURE WHAT I SAID BEFORE I AM TIRED AND NOT

RELAYING INFO WELL I THINK I AM TRYING TO REMEMBER IT ALL AND I CAM GETTING

IT CONFUSED WITH KIDS YELLING MOMMMM MOOMMMMMM at me while i am trying

to typei thought that when they said to keep him on his back that the carseat

was

what i should use its the only way to keep him on the back of his head, i was

kidding

about carseat torture he hates sitting his carseat or on his back for prolonged

periods

he wants to be on his belly soo i dont know if it will onlymake his head flat

i dont

want that, and what little time he is on his back he lays on the left back part

is what

the crainal dr said it why that side of his forehead protrudes but i dont see a

flat spot

so i dont know if he has no flat spot god i cant even try to pick this apart

any moer i

am way to worn out by this and worrying i am no doing something right enough

people are it seems always looking for me to screw up to say see see has too

many

kids can look that last one poor fellow soo neglected the stupid ped nurse

actually

told me he was overeatin because he wanted attentiion, not that he had reflux,

she

said all babys have reflux he just doign that becue he likes the attention he is

getting,

funny as soon he started zantac and we got differnt bottles he is back to normal

4

bottles a day not 10 a day and pukeing all day long anyho w i am sorry i am

ranting

and venting i am lost and frustrated and sad

> hillary in kcmo

> Re: help

>

>

> Hi Hillary,

>

> I am very, very far behind in reading these posts so I apologize in

advance if

what I

> am posting has already been discussed. I am certainly no expert when it

comes

to

> plagio but I wanted to comment on a couple of things. First, I believe

that your

son is

> the one with the slightly scaphy headshape. The difficult thing for

comparison

is if

> you are looking at photos of plagio children on this site. Many plagio

children

retain a

> brachycephalic configuration to their heads even after treatment for

plagio.

What I

> mean by this is that our plagio children often have heads that are

shorter and

wider

> than normal, even after treatment for plagio. Their heads after

treatment are

> symmetrical so they look pretty good even though their heads are

somewhat

shorter

> and wider than the norm, in fact they really do not look abnormal even

with this

> headshape. One person said to me when we were discussing this scenario

about

> what is normal that " normal is changing " in the sense that due to

backsleeping

heads

> are becoming shorter and wider a bit (I guess because so many kids are

affected to

> some degree). I guess my point is that comparing a headshape to the

shapes

on this

> site (even after treatment) is probably not the best measuring stick.

I'm not

sure if

> you were doing that comparison but I wanted to mention this.

>

> I did a rough measurement of your son's cephalic index(width divided by

length) from

> his photos and it appears his index is about 73. This is on the scaphy

side of

things

> but is also within one standard deviation from the mean of 78 for 6-12

month

old

> boys so this would likely be considered normal being only 5 from the

mean.

You

> mentioned CT told you that his head was 5 off and that insurance likely

wouldn't pay

> unless it was more than 15. I wonder if it was the cephalic index they

were

talking

> about and not the cranial vault asymmetry.

>

> Finally, I encourage you not to use any type of inclined seat to

reposition your

child.

> Scaphy bands hold growth front and back and allow the head to widen

uniformly. By

> just forcing a scaphy child onto his/her back it would flatten the back

of the

head and

> give a somewhat triangular look to the head when viewed from above. I'm

not

sure

> you could really reposition a scaphy headshape. Furthermore, the

inclined seats

may

> cause the back of the head to not only flatten, but to grow vertically

as well,

giving

> increased posterior head height which is not aesthetically pleasing. My

son has

some

> of this posterior height due to a bouncy seat which we thought was too

soft to

do

> damage. We were wrong :-(. I was recently in the grocery store and saw a

little

girl

> who was probably 18 months (with very little hair) and her head was

somewhat

long

> and narrow but the back of her head was flattened and pushed up. It did

look a

bit

> odd (not her longer head shape, the back of her head). I immediately

assumed

that

> she had spent a fair amount of time in swing/bouncy seat/carseat etc.

>

> Please note that all this is simply my opinion. I commend your efforts

to do the

best

> for your child. Best of luck with your appointments. The experts will

certainly

help

> you if you see plagio-knowledgeable ones.

>

> Mark ('s dad)

>

>

>

>

>

>

> --- In Plagiocephaly , " Steve Barlow " <sbarlow@m...>

wrote:

> > well my son has be forced to his carseat for his napping for trying to

round

out his

> head well today he will not let me put him down and he screams when he

sees

his

> carseat any ideas?

>

>

>

> For more plagio info