Re: Had our consultation: severe :o(

[Guest guest]

Kerri,

You're very right about not giving a hoot she'll be in a helmet!

We haven't moved onto the band yet but anticipate the necessity. I know

it will be me that has to " get over it " , not my daughter.

As I said I don't have the personal experience with the band, but I

would expect your feelings of guilt would change once she's in the

helmet. You'll be too interested in helping other people understand. I

aso suspect that once progress is seen you'll feel a little better.

All I can say for sure is you are not alone feeling guilty. I have

learned though the more info you have about your choices the better you

feel.

Hugs. I look forward to hearing about 's adventure.

Kate

[Guest guest]

Kerri,

I think its better that you have found out from CT that she was severe rather

than to have the Docs continuously put you at ease with saying its mild. At

least now you have the truth in your hands and you can move forward from

here. Don't feel guilty- you have been let down by your medical

professionals, as many of us have as well. Good luck to you and let us know

how things are going! It may take you a few weeks to adjust, but normally

most kids don't have any problems wearing the band, mine included!

' Mom

[Guest guest]

Kerri,

I'm sorry to hear that the condition is " severe " :-( Still, at least you are

going to be able to do something about it now that is non-invasive and

effective. And believe me, putting her in the band during the happiest time

of her infancy will not effect the amount of pleasure and enjoyment she

experiences. Most babies are totally unaware that there is something on their

head! And think of it this way - if she wears it now she will be able to

enjoy a beautifully round head during the most difficult time of her life

(puberty!) when everything is a crisis and a tragedy - she won't be able to

add " flat head " to her list of things to despair about LOL!!! It will be over

before you know it!

The guilt and anger is tough at first, but it gets better in time as the

initial shock wears off and you have a chance to put everything into

perspective. Best wishes with the casting - let us know how it goes!

Marci (Mom to )

Oklahoma

[Guest guest]

Kerri

My heart goes out to you and . We have all been there, i completely

understand how you are feeling i have the guilty feelings too. The thing is

we trust our doctors and believe they are telling us the truth we never

expect this. I was very nervous and apprehensive when i knew Dylan would be

starting the helmet treatment and my sweet boy has had to have 2 helmets in

total he's been wearing them for 8 months now. With it being so long i have

got used to him in the helmet and it feels normal. I am coming to the end of

the treatment now as Dylan is now 16 months. Dylan has had great correction

and he started late at 8 months. If Dylan had started the treatment at a

younger age he would not have been in 2 bands. Dylan was also diagnosed as

severe. Dylan's facial asymmetry has gone and his ears have also moved back,

they are not 100 per cent but only me and my husband can tell.

Keep your chin up Kerri, i know its hard but you know it will give a

rounder head and that you are doing the best for her. Lots of love to you

and .

Take care and keep us posted.

Kerry - Marcus (3) Dylan in second DOCband (16months)

Calgary,AB

>From: Baracus4@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Had our consultation: " severe " (

>Date: Tue, 25 Jun 2002 08:14:55 EDT

>

>Well, we had our consultation at Cranial Technologies yesterday. They said

>'s head is " severe. " I made an appt. with her pediatrician for next

>week

>to get the prescription and letter of medical necessity. I am so sad. I was

>really hoping deep down that they would say it was " mild " and that her

>original doctor may have been right after all, that it would round out on

>its

>own. My poor little munchkin.

>

>I am also sooooo p*ssed off at that doctor for ignoring my concerns. I want

>to run into that office and demand that they pay for this! (Have any of you

>ever asked a doc for payment???) I'm sure you all know how I feel. Of

>course,

>there is also that incredible guilt that I knew something was wrong and I

>didn't take more aggressive action and demand a referral to a specialist

>way

>back at 2 months. She'd probably be done and out of the band by now. Now,

>because I didn't push, she has to wear this damn helmet during the most

>active, happy times of her infancy. That's not fair to her. And I feel like

>it's my fault.

>

>How do you guys handle all these emotions? I know it's hurting me more than

>her, and she's never going to know that people will stare at her and all

>that

>fun stuff. But I never really expected to be at this moment. I'm not

>handling

>it very well.

>

>Sorry to rant...thanks for listening.

>

>Kerri ('s Mommy, Chicago)

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[Guest guest]

Kerry,

I can relate to EVERYTHING you have said here. Everything, from being upset that your child's head is classified as severe (they called Grant's moderate to severe...still KILLED me to hear it!!!), to being infuriated with the pediatrician for ignoring it (I can't remember how many times, over and over I asked about this), to playing the what if game (what if I had demanded something to be done sooner, what if I had known, etc.)...but, the GREAT news is you are moving on with treatment and this will be harder on you than it will be on her. It will be over before you know it and her head WILL be better! ((((((((((((((hugs))))))))))))))) I'm so irritated to that because I didn't push, Grant has to wear his DOCband now, at 9 months old, and during the HOT and muggy summer here in KC...It's been in the mid 90's and muggy, but you know what? he's handling it very well! If we go to the pool, we go after dinner with Daddy, and use that as his hour off. Otherwise, he's most always in the a/c (car, house, shopping, etc.) Sorry, rambling on now . You are a GREAT mommy! You WILL get past these emotions once you get going with treatment. (((((((((another big hug))))))))))))))) , Mom to Grant (born 9/26/01) ...in DOCband since 6/14/02