Re: Had our consultation: severe :o(

[Guest guest]

In a message dated 6/25/2002 7:30:47 AM Central Daylight Time, kia@... writes:

How old is ? Cole is 7 months and

just started his helmet. He is severe too.

Hi Kia,

is 7 months now...by the time she's in the band she'll probably be 8 months.

Kerri

[Guest guest]

,

I hear you... I feel the same way. But the only mistake we made was

listening to our doctors (who unfortunately treat this all so

casually!). And at least we did take steps to try to correct it

despite getting bad advice. How old is ? Cole is 7 months and

just started his helmet. He is severe too. I'm hoping for lots of

rounding in the coming months.

As far as how to deal with the guilt and anxiety, don't beat yourself

up. You are doing a great job looking out for your little one.

(That's what I keep telling myself... and the Zoloft helps too...

lol).

Kia

> 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)

[Guest guest]

Hi Kerry, 's mommy

I'm , Rhiannon's mommy, and I know how you feel. My daughter

is in the helmet right now, and she doesn't mind it a bit! (She will

be 6 months on June 29th). She is a happy, healthy little chatterbox

that is doing just great with her gross motor skills, helmet and

all! She is " very severe " and her head has responded really quickly

to the helmet. She has " used up " the life of the first one (in only

one month!), and we are casting for the second one on Saturday to get

more correction for her. I drive 325 miles each way to get to the

nearest CT, and although I am exhausted, it is worth every mile and

every minute. I have NO regrets, and I know that the day that we

drive home for the last time will be the happiest day of my life

(next to getting married and having my beautiful daughter).

Try not to dwell on the negative feelings. Feel good that you DID

get her to CT, that you ARE correcting this for her, and that she

WILL have a rounder head! This is great news!

I don't know if you can get the other doctor to pay for the helmet,

but it might be worth checking into...

Good luck to you and your little

Kind regards,

> 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)

[Guest guest]

Kerri:

We all understand how upset & angry you are about all of this. BUT,

I've said it a thousand times in this group, do NOT blame

yourself!!! None of this is your fault, NONE of this.

The important thing now, is that you are getting treatment that

will correct her head shape. Do not feel as though this will ruin

her most active times of her infancy. If she's wearing the band

while learning to crawl, walk, etc., the band will protect her from

many many boo boos, seriously. I found Abby's band to be a life

saver on many occasions

This really is very overwhelming at first, I was SO upset when Abby

first rec'd her band, I cried & cried. Abby couldn't have cared less

and after a week or two of Abby wearng her band, I never noticed it

any more. I actually thought she looked goofy when her band was off

becuz I was so used to seeing her wear it.

After you see improvement from 's band, you'll be sooo relieved.

I don't think any member has ever rec'd payment from the ped. for the

band. Definitely make your ped. aware of your unhappiness about his

laid back attitude. This might make him/her more aware of this

condition to help babies in the future.

Again....don't beat yourself up!

Please let us know when will be casted. Cheer up.....

Debbie Abby's mom DOCGrad

MI

> 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)

[Guest guest]

Hi Kerri-

I also have a severe child with plagio,and know exactely how you

feel. I cried from the time we found out it was severe until about a

week after he was in his STARband. My son Ian has know been in his

band for 1.5 month and is doing great. It is truly harder on the

parents than it is the child. I know it is hard not to believe any

of this right now but it will get better as time goes on. I find

that educating others helps me get through this everyday. You will

always have people ask you about it, but look at it as a chance to

share your knowledge.

Good luck and keep us posted to what's happening.

-Ian 7 months

Sacramento

> 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)