My son is showing signs...and I am numb

[Guest guest]

Here is another one for the group, my son . He is 5 months old

and has a flat spot on the right back side of his head. He will be

seeing a nuerosurgeon monday.

I am in shock, angry, sad, confused, and scared. I read the messages

archives and I want to crawl under a rock. I have not told anyone

other than my closest family members and I feel ashamed for keeping

it inside. My son is so beautiful that I cannot stand to even imagine

what he is going to experience in his very near future.

My wife and I have heard the typical responses, that are common to

this group, from our pediatrician that I finally demanded that she

refer my son. She obviously has very little experience I guess, I

still feel she is an incompetent, uncaring, asshole!

My very first question from this group is how can I determine 's

severity? He has a very visible flat spot on the rightside, his ears

are misaligned, and he is rightside dominant...but I do not see

buldging on his forehead.

Please let me know

's Dad,

[Guest guest]

, this probably isn't what you want to hear, but our 4 mo. old

son has a flat spot on the left side of his head, and

no " noticeable " asymmetry (although one ear is slightly more forward

than the other), and the PT at Cranial Tech told us that he has

moderate to severe plagio!! Of course, this is coming from a PT not

a doctor... so I would defer to the neurosurgeon you see on Monday.

Keep us posted, and good luck to you and your son --

Holly & (casted 5/17)

> Here is another one for the group, my son . He is 5 months old

> and has a flat spot on the right back side of his head. He will be

> seeing a nuerosurgeon monday.

>

> I am in shock, angry, sad, confused, and scared. I read the

messages

> archives and I want to crawl under a rock. I have not told anyone

> other than my closest family members and I feel ashamed for keeping

> it inside. My son is so beautiful that I cannot stand to even

imagine

> what he is going to experience in his very near future.

>

> My wife and I have heard the typical responses, that are common to

> this group, from our pediatrician that I finally demanded that she

> refer my son. She obviously has very little experience I guess, I

> still feel she is an incompetent, uncaring, asshole!

>

> My very first question from this group is how can I determine

's

> severity? He has a very visible flat spot on the rightside, his

ears

> are misaligned, and he is rightside dominant...but I do not see

> buldging on his forehead.

>

> Please let me know

>

>

> 's Dad,

[Guest guest]

Hi , did you look at all the pictures on the plagio web page. You

could compare these to your son's head. The Nurosurgeon will tell you

how severe he thinks the plagio is. The way I see it, that all of us

are very lucky that the only thing wrong with our children is Plagio.

There are a lot of sick children out there. When I went to the ortho

to get my son's helmet adjusted there were so many children that

couldn't walk, needed braces etc. That I count my lucky stars, that

my son's condition is so minor compared to these children.

Good luck Steffany

> Here is another one for the group, my son . He is 5 months old

> and has a flat spot on the right back side of his head. He will be

> seeing a nuerosurgeon monday.

>

> I am in shock, angry, sad, confused, and scared. I read the

messages

> archives and I want to crawl under a rock. I have not told anyone

> other than my closest family members and I feel ashamed for keeping

> it inside. My son is so beautiful that I cannot stand to even

imagine

> what he is going to experience in his very near future.

>

> My wife and I have heard the typical responses, that are common to

> this group, from our pediatrician that I finally demanded that she

> refer my son. She obviously has very little experience I guess, I

> still feel she is an incompetent, uncaring, asshole!

>

> My very first question from this group is how can I determine

's

> severity? He has a very visible flat spot on the rightside, his

ears

> are misaligned, and he is rightside dominant...but I do not see

> buldging on his forehead.

>

> Please let me know

>

>

> 's Dad,

[Guest guest]

Hi :

Boy, can I relate to your feelings. It is really hard to not feel

sorry for our beautiful little ones, isn't it? Most of us here have

looked at our little guys and gals, rubbed their little heads and

cried. We also stare at them for hours looking desperately at their

face and head and say to ourselves " Is this normal? Is this

smaller? Is this bigger? " Or, the next day " I don't see anything.

Did I overreact yesterday? " Truly, this is not an easy thing as we

are all concerned about how it will turn out. None of us wants our

child to be limited by some type of deformity if it can be helped,

which this can. To those who may say " it's only cosmetic " I say "

Then why do plastic surgeons make so much money? " Obviously, there

is a demand. So, it is natural for us as parents to want to protect

our children and be sure that they have the best possible life that

we can provide.

The good news is that we are talking about something that CAN be

fixed. Our little ones only have to wear a helmet for a couple of

months, and they are better. It is true that we have alot to be

thankful for, for instance just when we want to throw a pity-party

about plagio we meet a parent of a child with craniosynestosis. When

we think about our child going through that we meet parents of

children who are having similar surgeries for other more ominous

reasons and who will never be " normal " . So yes, alot to be thankful

for - but still this is no cakewalk.

Also, for me the scariest part was when I realized that I would have

to take my daughter's treatment into my own hands, and I could not

rely on the medical professionals to be up on plagio/tort. I think

of it as a rare disease. We HAVE to be pro-active to get the help we

need and search out the best therapies that we can for our kids. It

is a daunting task, and I am exhausted, but I have at this point

educated myself to the point that I can tell an experienced health

professional (those who can teach me something about tort/plagio) and

inexperienced health professionals (those who are not able to answer

my questions, or give a non-answer, or worse, an answer that is

incorrect.)If you meet the non-experienced kind, get out as soon as

possible, don't take any sh** and find someone else to help you with

your child. My humble advise from my humbling experiences. (The

archives will show my recent " nervous breakdown " from having bad

experiences. Thankfully, that's over and we are casting for the DOC

band tomorrow:~). The folks at CranioTech are SOOO wonderful. The

Tech in Wisconsin listened to me cry over the phone, and was just so

reassuring and great AND answered all my questions, did not patronize

me, was the ultimate compassionate, caring professional! And no, I do

not work for them. I am just a mom with a plagio child.

, you and your son will be fine. Just start by learning

everything you can, and seek out those that can help you with this

condition. I don't know how to determine severity, as I thought my

daughter looked pretty good, but she is " severe " .

Good luck to you and !

Kind regards,

, Rhiannon's mom

> Here is another one for the group, my son . He is 5 months old

> and has a flat spot on the right back side of his head. He will be

> seeing a nuerosurgeon monday.

>

> I am in shock, angry, sad, confused, and scared. I read the

messages

> archives and I want to crawl under a rock. I have not told anyone

> other than my closest family members and I feel ashamed for keeping

> it inside. My son is so beautiful that I cannot stand to even

imagine

> what he is going to experience in his very near future.

>

> My wife and I have heard the typical responses, that are common to

> this group, from our pediatrician that I finally demanded that she

> refer my son. She obviously has very little experience I guess, I

> still feel she is an incompetent, uncaring, asshole!

>

> My very first question from this group is how can I determine

's

> severity? He has a very visible flat spot on the rightside, his

ears

> are misaligned, and he is rightside dominant...but I do not see

> buldging on his forehead.

>

> Please let me know

>

>

> 's Dad,

[Guest guest]

Hi :

Welcome to our group! I can tell you are VERY concerned about

's headshape. As for determining his severity, it's hard to

say. Have you looked at our member's kids photos in our Photos

section of the group, then Our Plagio kids. Maybe you could get a

good idea of your son's head shape compared to our other cute plagio

babies. Ask the neurosurgeon's opinion on his severity. He'll be a

good one to give you his opinion of it, as he sees plagio babies

frequently I would assume.

There is NO NO NO NO reason for you to feel ashamed of 's head

shape. You & your wife have done everything you were supposed to do

by sleeping on his back, etc......Most of us in the group never

heard of " flat heads " or plagio until our child had already developed

it.

Have you tried repositioning ? Check out

www.plagiocephaly.org/support then click repositioning tips for some

helpful ideas.

Also in that same website, there's a link for " questions for the

Dr " ...I suggest printing that list out before you see the neuro

Monday & asking those great questions. It will be very helpful!

Don't worry! This is a common problem, yet very correctable, esp. at

's younger age!

Welcome again, please let us know how the neuro visit goes Monday.

Debbie Abby's mom DOCGrad

MI

- In Plagiocephaly@y..., " eklucky1 " <eklucky@a...> wrote:

> Here is another one for the group, my son . He is 5 months old

> and has a flat spot on the right back side of his head. He will be

> seeing a nuerosurgeon monday.

>

> I am in shock, angry, sad, confused, and scared. I read the

messages

> archives and I want to crawl under a rock. I have not told anyone

> other than my closest family members and I feel ashamed for keeping

> it inside. My son is so beautiful that I cannot stand to even

imagine

> what he is going to experience in his very near future.

>

> My wife and I have heard the typical responses, that are common to

> this group, from our pediatrician that I finally demanded that she

> refer my son. She obviously has very little experience I guess, I

> still feel she is an incompetent, uncaring, asshole!

>

> My very first question from this group is how can I determine

's

> severity? He has a very visible flat spot on the rightside, his

ears

> are misaligned, and he is rightside dominant...but I do not see

> buldging on his forehead.

>

> Please let me know

>

>

> 's Dad,

[Guest guest]

Hi and welcome! First let me say that 5 months is an excellent age to

start treating the plagio. It is hard to say what severity he may be without

seeing him or at least seeing some pictures. Have you been trying

repositioning? Does he have tort? If you start by doing some aggressive

repositioning and stretches if he has tort then you might see some correction

with that alone. Otherwise, five months is a great age to start with a helmet

or band and get great correction. Speaking with a specialist is an excellent

idea - they will best be able to tell you what your options are from this

point going forward. It sounds like you have been very proactive and your son

is lucky for that. The fact is you are in the same boat as soooo many of us

here are in or have been in and you are doing all you can virtually on your

own. The good news is that plagio is VERY treatable with no surgery and no

pain so keep that thought in mind too. Have you checked out the photo section

of our group? I think you will find that our babies look adorable in their

bands and helmets and if you go that route you will see that your baby looks

precious in his too!

Good luck and keep us posted!

Marci (mom to )

Oklahoma