Re: update Delylah's appt. a shot down/marci

[Guest guest]

Hey everyone...today was the day..a disaster.....i had my green folder full of

infor...recited the key points of what to say to the doc...just to have a new

younger graduate enter the room .....i told him that i was concerned about it.. &

of course i know he can't do anything bc he ain't no doc yet....i thought he

would understand but it turns out that he said " i don't see anything wrong with

it..it purely is a cosmetic thing " i asked him if he knew about the band..says

he knows very little that the doc could tell me...then later the doc comes in

and says that her head growth is fine..she's fine...she's just born like that

........urgh!!!!!!!!!was i mad but i kept my cool & tried to get him to get a

specialist to look at it.......he looked right into my eyes, sitting in front of

me, and said " i'm the specialist...there's nothing you can do about it(the

head)..and there's nothing you should do about it " .....i was calm but deep

inside i felt like i could cry....two against one...don't know anything....he

said he has seen flatter than my child's ...i should of asked what he did with

them but i could hardly talk or smile...i'm gonna find another ped...i think

they look down on me bc i'm a new, 21yrs old mom, you know i kept reminding them

that i have done lots of research.....but they wouldn;t hear me out...this is

terrible, i don't care if it's cosmetic....i just want to get to the ortho. ...i

will pay, i don't care....i trust these ped. knowing what they say is good for

my bb (back to sleep) and things just didn't turn out the same...i should have

listened to my MOTHER! -mary i got to call jaya & get that AR's couples doc!!

marci does your ortho need a referral from a specialist?/??

[Guest guest]

Oh - I'm so sorry to hear about your ignorant ped. He really has his

nerve - what a jerk! Can you switch peds and get in with a new one quickly?

My ortho works with a specialist at University Hospital in OKC. More then

likely he would want you to have a referral from that specialist. That is Dr.

Francel and I emailed you his name, phone number, etc a few days ago. You

could probably see Dr. Francel without a referral and if your baby has plagio

then Dr. Francel will write the RX for the band I'm sure of it! It wouldn't

hurt to call Bill Barringer directly first though and get his take on things.

He would certainly give you the direction you need at this point. Here is the

information to for his office:

University Of Oklahoma Orthtcs

1122 NE 13th St, Oklahoma City, OK 73117

Phone: (405) 271-3644

If you want I would be happy to call him and see if he sees patients without

a referral. It would be a local call for me.

I just can't believe the ignorance of your ped! What a total JERK!!!!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi :

I just want to say that you did a GREAT JOB!! You did everything

right!!! It is not YOUR problem that pitted 2 against you, and that

they already had made a decision before you even arrived. The fact

that they would not listen to your concerns or answer your questions

adequately proves that they are incompetent to make a decision in

this case.

The fact that the doc has seen kids " flatter than this " , is none of

your concern. You are the parent to THIS child - not the others. If

their parents didn't question the doc, it has NOTHING to do with you

or your needs.

My child's head was " just cosmetic " as well, and it is a BIG DEAL to

me. Yes, I'm happy that she does not have any other condition, but

that doesn't mean that I cannot help her look " normal " . Also, that

doc SHOULD have at least taken an x-ray to rule out cranio. But, in

his infinite wisdom, he didn't. So, I don't see why you should trust

him (as you don't) He has given you no reason to.

As far as you being 21 - don't worry about that. I'm 36, and I think

they thought I was a " crazy, perfectionist older mom " rather than

a " young inexperienced mom " . So, it doesn't matter. They label you

no matter where you are in the lifeline.

You are a WONDERFUL, informed, concerned mom. You are doing a great

job!!! Start calling around to peds on your insurance and see if you

can find one who supports banding. Your questions to the other moms

are great - I know they will help you as much as they can.

You have all of us here, cheering for you and WE KNOW YOU CAN DO IT.

I don't know if you saw my story - but read " Re:Anyone in Minnesota

LOOOOONG. " That is my story in a nutshell. It was hard. I cried

every day. I KNOW that everyone thought I was crazy because they so

much as told me I was. BUT here I am today. We only have 4 weeks (2

visits) left with the DOC Band, and my daughter's head looks NORMAL

for the first time since she was born! I will never regret the fight

I had to get her here, and when I tell her the story of this whole

helmet thing some day I will be sure to tell her that if she KNOWS

something can work to keep fighting for it, even if " experts " tell

her she is wrong. I think it is a great lesson for me, as well as

for her!

GOOD LUCK, and keep us posted. Anything we can do to help you YOU

KNOW is yours!!!!

, Rhiannon's mom

> Hey everyone...today was the day..a disaster.....i had my green

folder full of infor...recited the key points of what to say to the

doc...just to have a new younger graduate enter the room .....i told

him that i was concerned about it.. & of course i know he can't do

anything bc he ain't no doc yet....i thought he would understand but

it turns out that he said " i don't see anything wrong with it..it

purely is a cosmetic thing " i asked him if he knew about the

band..says he knows very little that the doc could tell me...then

later the doc comes in and says that her head growth is fine..she's

fine...she's just born like that .......urgh!!!!!!!!!was i mad but i

kept my cool & tried to get him to get a specialist to look at

it.......he looked right into my eyes, sitting in front of me, and

said " i'm the specialist...there's nothing you can do about it(the

head)..and there's nothing you should do about it " .....i was calm

but deep inside i felt like i could cry....two against one...don't

know anything....he said he has seen flatter than my child's ...i

should of asked what he did with them but i could hardly talk or

smile...i'm gonna find another ped...i think they look down on me bc

i'm a new, 21yrs old mom, you know i kept reminding them that i have

done lots of research.....but they wouldn;t hear me out...this is

terrible, i don't care if it's cosmetic....i just want to get to the

ortho. ...i will pay, i don't care....i trust these ped. knowing what

they say is good for my bb (back to sleep) and things just didn't

turn out the same...i should have listened to my MOTHER! -mary i got

to call jaya & get that AR's couples doc!! marci does your ortho

need a referral from a specialist?/??

[Guest guest]

,

I'm so sorry to read of the horrible experience you had with the

" specialist " - makes you want to tag team them and knock those brick heads

together! I hope that you will be able to find a ped that is band friendly

if you feel this is what needs to be done. You can get a rx for the band

from your ped- call around to some of the Cranial Tech centers in your area

and find out what Doctors they are getting referrals from. Good luck and

please keep us posted!

nicholas' mom

[Guest guest]

Great post to , !!!! I second that!

' Mom