Re: curious about complaints

[Guest guest]

WHAT? Whose fault do you think this is? IT IS NOT YOUR FAULT! Why the

heck are we paying doctors if we think we should know all the answers

first? Your doctor blew it and needs to be educated. A complaint

would do that. Complaints can go on the record, but it won't ruin her

career. It's not like a lawsuit. Go ahead and make a complaint and

maybe the next baby will get a freakin' helmet without the fight

you're going through.

Boy I sound crabby. Good luck.

, 18 mos, tort, DOC Band 5/7

> I am going to start off by saying my daughter Kaitlyn is 12 months

> old w/ plagio....we noticed it when she was born. When she was 2

> months old We started going to the pediatrician several times

finally

> she referred us to a nuerosurgeon at 4 months of age when she

noticed

> it wasnt getting any better with repo. So we go to the nuerosurgeon

> she says she doesnt need helmet it will round out on its own....ok

we

> keep doing the repo...then at 7 months i take her back to

> pediatrician she refers us back to nuerosurgeon again she says she

> doesnt need it....at 11 months I go back to nuero....she finally

> refers me to plastic surgeon..though i dont take Kaitlyn to see him

> until this 28th. So still have to wait on that senario since he has

> to be the one to write prescription( so says the nuerosurgeon)Why

> couldnt she write it?

> Anyhow I have just been so upset with that nuerosurgeon for just

> sending us back home and giving us reassurance that she will round

> out and that the human skull doesnt harden cmpletely until the age

of

> 3 that she will be fine. Dont get me wrong I am mad at myself for

> listenng to her and not finding someone else...and I sure wish I

had

> found this group sooner than i did and maybe I wouldn't have been

so

> naive about it all.

> I guess what my question is ....should I have a complaint against

> her ? I would truly hate to see another parent listen to her

> especially a naive one without the knowledge of a support group

like

> this to learn from.Honest opinions anyone please...i dont know see

if

> it would be wrong of me to complain when it is partly my fault for

> not realizing she was sooo wrong about it getting better when she

is

> 3..I mean how dumb am I? from 2 months to now its only got worse

and

> I knew that...I just thought well she ( nuerosurgeon) must know

what

> she is talking about maybe by the time she is 3 years of age this

> repostioning will help...god Im stupid my poor baby would hate me

for

> not doing something anything to help her from vision problems, ear

> infections, and let alone the psycological part of it.

> Of course now I am trying my best and I have faith the plastic

> surgeon will write the script the 28th...if not I have made my

> appointment at straight ahead (cranialtech) in cleveland for july

> 3rd...and i realize if that nuerosurgeon would have just referred

me

> to plastic surgeon at 4 months old we would have hadd this over and

> better chance than now at 12 months of age.I wish I knew about

> vranial tech at 4 months of age...goodness i am writing a

book...sorry

> Should i write a complaint?

> Robin mom of Kaitlyn 12 months old-Hillsboro,Ohio

[Guest guest]

Robin,

We are ALL sick & tired of lame doctors shrugging their shoulders and

acting like it's no big deal. Every time I read a post about it I get

all worked up inside. I just think all the time and irritation that

could be avoided if things were nipped in the bud early on by these

doctors!! And the worst part about it is the ones that I hear make

you feel like you are an " obsessed Mom " or " paranoid. " It's just so

wrong.

It couldn't hurt to file a complaint. Maybe by doing so it will save

another parent from having to go through 12 months of wasted time.

Sounds like both the ped and the neuro dropped the ball on this one.

Bottom line is to try not to blame yourself for the plagio. It's hard

not to though. I look back on my own life and think what kind of Mom

doesn't notice her child's head is getting flatter by the week? But,

I've tried to stop the blaming (on myself and hubbby)and concentrate

on the positive-he's receiving great treatment and this will all be

over shortly.

Good luck,

Crista

Mom to -8 mo old-DOCbanded 5/13

> I am going to start off by saying my daughter Kaitlyn is 12 months

> old w/ plagio....we noticed it when she was born. When she was 2

> months old We started going to the pediatrician several times

finally

> she referred us to a nuerosurgeon at 4 months of age when she

noticed

> it wasnt getting any better with repo. So we go to the nuerosurgeon

> she says she doesnt need helmet it will round out on its own....ok

we

> keep doing the repo...then at 7 months i take her back to

> pediatrician she refers us back to nuerosurgeon again she says she

> doesnt need it....at 11 months I go back to nuero....she finally

> refers me to plastic surgeon..though i dont take Kaitlyn to see him

> until this 28th. So still have to wait on that senario since he has

> to be the one to write prescription( so says the nuerosurgeon)Why

> couldnt she write it?

> Anyhow I have just been so upset with that nuerosurgeon for just

> sending us back home and giving us reassurance that she will round

> out and that the human skull doesnt harden cmpletely until the age

of

> 3 that she will be fine. Dont get me wrong I am mad at myself for

> listenng to her and not finding someone else...and I sure wish I

had

> found this group sooner than i did and maybe I wouldn't have been

so

> naive about it all.

> I guess what my question is ....should I have a complaint against

> her ? I would truly hate to see another parent listen to her

> especially a naive one without the knowledge of a support group

like

> this to learn from.Honest opinions anyone please...i dont know see

if

> it would be wrong of me to complain when it is partly my fault for

> not realizing she was sooo wrong about it getting better when she

is

> 3..I mean how dumb am I? from 2 months to now its only got worse

and

> I knew that...I just thought well she ( nuerosurgeon) must know

what

> she is talking about maybe by the time she is 3 years of age this

> repostioning will help...god Im stupid my poor baby would hate me

for

> not doing something anything to help her from vision problems, ear

> infections, and let alone the psycological part of it.

> Of course now I am trying my best and I have faith the plastic

> surgeon will write the script the 28th...if not I have made my

> appointment at straight ahead (cranialtech) in cleveland for july

> 3rd...and i realize if that nuerosurgeon would have just referred

me

> to plastic surgeon at 4 months old we would have hadd this over and

> better chance than now at 12 months of age.I wish I knew about

> vranial tech at 4 months of age...goodness i am writing a

book...sorry

> Should i write a complaint?

> Robin mom of Kaitlyn 12 months old-Hillsboro,Ohio

[Guest guest]

Robin,

Please do not be so hard on yourself! You *have* been doing

everything you knew how to do, by taking your daughter to the doctors

and persuing this through up until now. Pat yourself on the back for

persevering.

Of course you think you can trust doctors. I work in healthcare(or

did before children) and know to question things based on experience

and still find I want to have so much faith in those who are supposed

to be experts. It is all just so hard when it is our babies, I

find. You just don't want anything to be wrong, and I find everyone

tries to make us feel better by saying they are fine, etc... It

makes it hard.

I am sure you will get the script you need, especially since the

surgeon referred you for that very purpose. But I do think any

doctor, even the reg. ped can prescribe it. Maybe she wants an

addtional consult realizing she was wrong, and it did not round out.

Maybe she realizes she does need another expert's help in dealing

with your child because what she told you (which I assume she truly

believed) did not happen.

Good luck with it. It is just a few more days, right? I hope it all

goes well for you. mish

> I am going to start off by saying my daughter Kaitlyn is 12 months

> old w/ plagio....we noticed it when she was born. When she was 2

> months old We started going to the pediatrician several times

finally

> she referred us to a nuerosurgeon at 4 months of age when she

noticed

> it wasnt getting any better with repo. So we go to the nuerosurgeon

> she says she doesnt need helmet it will round out on its own....ok

we

> keep doing the repo...then at 7 months i take her back to

> pediatrician she refers us back to nuerosurgeon again she says she

> doesnt need it....at 11 months I go back to nuero....she finally

> refers me to plastic surgeon..though i dont take Kaitlyn to see him

> until this 28th. So still have to wait on that senario since he has

> to be the one to write prescription( so says the nuerosurgeon)Why

> couldnt she write it?

> Anyhow I have just been so upset with that nuerosurgeon for just

> sending us back home and giving us reassurance that she will round

> out and that the human skull doesnt harden cmpletely until the age

of

> 3 that she will be fine. Dont get me wrong I am mad at myself for

> listenng to her and not finding someone else...and I sure wish I

had

> found this group sooner than i did and maybe I wouldn't have been

so

> naive about it all.

> I guess what my question is ....should I have a complaint against

> her ? I would truly hate to see another parent listen to her

> especially a naive one without the knowledge of a support group

like

> this to learn from.Honest opinions anyone please...i dont know see

if

> it would be wrong of me to complain when it is partly my fault for

> not realizing she was sooo wrong about it getting better when she

is

> 3..I mean how dumb am I? from 2 months to now its only got worse

and

> I knew that...I just thought well she ( nuerosurgeon) must know

what

> she is talking about maybe by the time she is 3 years of age this

> repostioning will help...god Im stupid my poor baby would hate me

for

> not doing something anything to help her from vision problems, ear

> infections, and let alone the psycological part of it.

> Of course now I am trying my best and I have faith the plastic

> surgeon will write the script the 28th...if not I have made my

> appointment at straight ahead (cranialtech) in cleveland for july

> 3rd...and i realize if that nuerosurgeon would have just referred

me

> to plastic surgeon at 4 months old we would have hadd this over and

> better chance than now at 12 months of age.I wish I knew about

> vranial tech at 4 months of age...goodness i am writing a

book...sorry

> Should i write a complaint?

> Robin mom of Kaitlyn 12 months old-Hillsboro,Ohio

[Guest guest]

Robin,

What a dianosis and treatment ordeal you have already been through

with Kaitlyn. I laud you for being so persistant in spite of the

anti-banding or uneducated doctors with which you have had to deal.

At this point, maybe you could directly demand a prescription from

anyone, someone! Your pediatrician, the neuro, and the plastic

surgeon are all eligible to write this prescription.

The American Academy of Pediatrics issued a directive on the

treatment of Plagiocephaly in July 2003, which everyone involved in

your daughter's care should have read and abided by. In a nutshell,

here are some highlights of that release:

" To prevent the deformity, parents should be counseled during the

newborn period (by 2 to 4 weeks of age) when the skull is maximally

deformable

Once deformational plagiocephaly is diagnosed, the parent should be

made aware of the condition and the mechanical adjustments that can

be instituted. In general, most infants improve if the appropriate

measures are conducted for a 2- to 3-month period.

If there is progression or lack of improvement of the skull

deformity after a trial of mechanical adjustments, then referral to

a pediatric neurosurgeon, a general neurosurgeon with expertise in

pediatrics, or a craniofacial surgeon or craniofacial anomalies team

should be considered. The purpose of this referral is to obtain the

expertise of the pediatric surgical specialist on whether the

correct diagnosis has been made and to direct the subsequent

management, which may include molding helmets or surgery.

Skull molding helmets are an option for patients with severe

deformity or skull shape that is refractory to therapeutic physical

adjustments and position changes. "

By the way, with my own daughter, Remy, I received no counseling on

positioning after her birth, recieved no diagnosis or repositioning

directives after her plagio/brachy developed, wasn't referred to a

specialist until I demaded one when she was 7 months old, and

wasn't " offered " a band prescription even though her condition was

worsening. Just awful!! Our experience took place before the July

2003 AAP Release on Plagio, so when it came out, I marched a copy of

it to the pediatrician's practice, highlighted and all, and demanded

they educated themselves and comply.

It may be of interest to you that the orthotics industry is keenly

aware of this lack of consistency in evaluating plagio and referring

for treatment in a timely manner. They have proposed additional

guidelines to the AAP for consideration, including a decision tree.

I hope the AAP adopts these guidelines soon, and publishes them as

such (if the link is more than one line long, you may need to copy

and paste the entire link to your address bar to get directed

correctly):

AAP Proposal Nov. 2003

New Guideline for treatment of deformational plagiocephaly are

proposed 11/5/03

http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DD

5007FCDB8?

OpenDocument & id=48DDE4A73E09A969852568880078C249 & c=Paediatrics & count=

10.htm

I hope this information is helpful, and maybe you could make the

neuro and ped aware of it as well, if you think it might help other

parents.

Take care,

Christie (Mom to Repo'd Remy)

> I am going to start off by saying my daughter Kaitlyn is 12

months

> old w/ plagio....we noticed it when she was born. When she was 2

> months old We started going to the pediatrician several times

finally

> she referred us to a nuerosurgeon at 4 months of age when she

noticed

> it wasnt getting any better with repo. So we go to the

nuerosurgeon

> she says she doesnt need helmet it will round out on its own....ok

we

> keep doing the repo...then at 7 months i take her back to

> pediatrician she refers us back to nuerosurgeon again she says she

> doesnt need it....at 11 months I go back to nuero....she finally

> refers me to plastic surgeon..though i dont take Kaitlyn to see

him

> until this 28th. So still have to wait on that senario since he

has

> to be the one to write prescription( so says the nuerosurgeon)Why

> couldnt she write it?

> Anyhow I have just been so upset with that nuerosurgeon for just

> sending us back home and giving us reassurance that she will round

> out and that the human skull doesnt harden cmpletely until the age

of

> 3 that she will be fine. Dont get me wrong I am mad at myself for

> listenng to her and not finding someone else...and I sure wish I

had

> found this group sooner than i did and maybe I wouldn't have been

so

> naive about it all.

> I guess what my question is ....should I have a complaint against

> her ? I would truly hate to see another parent listen to her

> especially a naive one without the knowledge of a support group

like

> this to learn from.Honest opinions anyone please...i dont know see

if

> it would be wrong of me to complain when it is partly my fault for

> not realizing she was sooo wrong about it getting better when she

is

> 3..I mean how dumb am I? from 2 months to now its only got worse

and

> I knew that...I just thought well she ( nuerosurgeon) must know

what

> she is talking about maybe by the time she is 3 years of age this

> repostioning will help...god Im stupid my poor baby would hate me

for

> not doing something anything to help her from vision problems, ear

> infections, and let alone the psycological part of it.

> Of course now I am trying my best and I have faith the plastic

> surgeon will write the script the 28th...if not I have made my

> appointment at straight ahead (cranialtech) in cleveland for july

> 3rd...and i realize if that nuerosurgeon would have just referred

me

> to plastic surgeon at 4 months old we would have hadd this over

and

> better chance than now at 12 months of age.I wish I knew about

> vranial tech at 4 months of age...goodness i am writing a

book...sorry

> Should i write a complaint?

> Robin mom of Kaitlyn 12 months old-Hillsboro,Ohio

[Guest guest]

Great response. I want to add that I don't think only severe cases

should be offered a molding helmet. Any kid with plagio should be

offered the treatment. All insurance companies pay for circumcision,

which research has shown is NOT medically necessary. They should pay

for any deformity to be corrected, even if it is not horrific.

, 18 mos, tort, DOC Band 5.7

> > I am going to start off by saying my daughter Kaitlyn is 12

> months

> > old w/ plagio....we noticed it when she was born. When she was 2

> > months old We started going to the pediatrician several times

> finally

> > she referred us to a nuerosurgeon at 4 months of age when she

> noticed

> > it wasnt getting any better with repo. So we go to the

> nuerosurgeon

> > she says she doesnt need helmet it will round out on its

own....ok

> we

> > keep doing the repo...then at 7 months i take her back to

> > pediatrician she refers us back to nuerosurgeon again she says

she

> > doesnt need it....at 11 months I go back to nuero....she finally

> > refers me to plastic surgeon..though i dont take Kaitlyn to see

> him

> > until this 28th. So still have to wait on that senario since he

> has

> > to be the one to write prescription( so says the nuerosurgeon)Why

> > couldnt she write it?

> > Anyhow I have just been so upset with that nuerosurgeon for just

> > sending us back home and giving us reassurance that she will

round

> > out and that the human skull doesnt harden cmpletely until the

age

> of

> > 3 that she will be fine. Dont get me wrong I am mad at myself for

> > listenng to her and not finding someone else...and I sure wish I

> had

> > found this group sooner than i did and maybe I wouldn't have been

> so

> > naive about it all.

> > I guess what my question is ....should I have a complaint

against

> > her ? I would truly hate to see another parent listen to her

> > especially a naive one without the knowledge of a support group

> like

> > this to learn from.Honest opinions anyone please...i dont know

see

> if

> > it would be wrong of me to complain when it is partly my fault

for

> > not realizing she was sooo wrong about it getting better when she

> is

> > 3..I mean how dumb am I? from 2 months to now its only got worse

> and

> > I knew that...I just thought well she ( nuerosurgeon) must know

> what

> > she is talking about maybe by the time she is 3 years of age this

> > repostioning will help...god Im stupid my poor baby would hate me

> for

> > not doing something anything to help her from vision problems,

ear

> > infections, and let alone the psycological part of it.

> > Of course now I am trying my best and I have faith the plastic

> > surgeon will write the script the 28th...if not I have made my

> > appointment at straight ahead (cranialtech) in cleveland for july

> > 3rd...and i realize if that nuerosurgeon would have just referred

> me

> > to plastic surgeon at 4 months old we would have hadd this over

> and

> > better chance than now at 12 months of age.I wish I knew about

> > vranial tech at 4 months of age...goodness i am writing a

> book...sorry

> > Should i write a complaint?

> > Robin mom of Kaitlyn 12 months old-Hillsboro,Ohio