Re: Advice on first Neurosurgeon Appt.

[Guest guest]

Hi,

I went for mine first appointment here in PHX and your son will

get his head measured and the doctor will really let you know if he

really needs it. But from what you said I think he will.. your son

won't get the helmet that day. The doc will give you places to go and

call. You better make sure your insurance covers it because mine

doesn't and I don't know what to do.

--- In Plagiocephaly , " soleilfoo " <Iansmom22504@a...>

wrote:

> Hi I was just wondering if anyone could give me any advice on our

> appointment with the Neurosurgeon. What kinds of questions should

I

> ask and what I can expect. I would appriciate it. We had to trick

our

> pediatrician into giving us a referral for our son by scheduling

our

> appointment with the Neurosurgeon first and she says that this

> Neurosurgon isn't going to do anything for our son because she

dosn't

> feel there is a problem and she also said she has seen severe cases

> that he has turned away this worries me! My son most definatly has

> plagiocephaly his head is very flat on the right side and bulges

alot

> on the right his ears are also off. Has anyone ever run across a

> Neurosurgeon that hasn't treated it? Thank you for your help!

> -Jeannine

[Guest guest]

, good luck to you. I know how expensive the helmets are I have

a feeling mine isn't going to cover it either. Thanks for the info.

> > Hi I was just wondering if anyone could give me any advice on our

> > appointment with the Neurosurgeon. What kinds of questions

should

> I

> > ask and what I can expect. I would appriciate it. We had to trick

> our

> > pediatrician into giving us a referral for our son by scheduling

> our

> > appointment with the Neurosurgeon first and she says that this

> > Neurosurgon isn't going to do anything for our son because she

> dosn't

> > feel there is a problem and she also said she has seen severe

cases

> > that he has turned away this worries me! My son most definatly

has

> > plagiocephaly his head is very flat on the right side and bulges

> alot

> > on the right his ears are also off. Has anyone ever run across a

> > Neurosurgeon that hasn't treated it? Thank you for your help!

> > -Jeannine

[Guest guest]

Hi Jeannine!

We have a couple of links here at the group that might help you

compile a list of q's for the neuro:

Cranial Tech's Questions to Ask the Doctor or Orthotist:

The quality of treatment available varies widely for children with

plagiocephaly. One way to avoid pitfalls is to be aware of them.

Print this page and use it for your research.

http://www.cranialtech.com/Treatment/selecting.html

Questions for the Doctor

It is important to ask any questions that concern you. WRITE DOWN

the questions you want to ask, and take a pen (or a mini tape

recorder) with you so you can write down the answers given. Here are

some suggested questions for you doctor and/or orthotist. Please

feel free to print this page...

http://www.plagiocephaly.org/support/questions.htm

When I took my daughter to the neuro to be evaluated, it was a huge

disappointment. I was hoping to find a real resource about plagio

treatment from someone knowledgeable, but all I got was literally a

glance at my daughter's head and basically a " What's the big deal? "

My daughter's head was literally as flat as a board at the back,

too. I steeled myself and demanded a prescription, which he

grudgingly provided. So at least I got what I needed to at least be

able to make a choice about using a band or not. You may need to be

very direct and firm regarding your expectations of the visit.

You can get a prescription for a helmt/band from your ped, the

neuro, or other specialists such as craniofacial doctors or plastic

surgeons. If you hit a brick wall with the neuro, go somewhere else.

When is your appt. at the neuro? If this neuro has a reputation for

being anti-band, is there another specialist you can change to?

Christie (Mom to Repo'd Remy)

> Hi I was just wondering if anyone could give me any advice on our

> appointment with the Neurosurgeon. What kinds of questions should

I

> ask and what I can expect. I would appriciate it. We had to trick

our

> pediatrician into giving us a referral for our son by scheduling

our

> appointment with the Neurosurgeon first and she says that this

> Neurosurgon isn't going to do anything for our son because she

dosn't

> feel there is a problem and she also said she has seen severe

cases

> that he has turned away this worries me! My son most definatly has

> plagiocephaly his head is very flat on the right side and bulges

alot

> on the right his ears are also off. Has anyone ever run across a

> Neurosurgeon that hasn't treated it? Thank you for your help!

> -Jeannine

[Guest guest]

Jeannine,

My ped said the same thing! But I really love her anyway. My ped

gladly wrote the referral but warned that they " turned a more severe

case away. " Knowing that, I just prepared myself with all of the

research that I could find. The neuro didn't do any measurements,

just did a visual examination and asked questions. Just KNOW that

most are not pro-band and won't write a script without your request.

Just be calm and FIRM and tell him that you and your husband want to

pursue helmet therapy as it is a quick, non-invasive therapy that

will ensure that his head grows out symmetrical and that you don't

want to lose this window of opportunity. I guarantee that he will

tell you that it is going to round out and you may second-guess

yourself so just be sure that you know what you want to do ahead of

time. I hope this helps and makes sense. I am the queen of the run-

on sentence! good luck and please let us know what happens.

Sue

Colin F. 11 mos., brachy

Starband 6/29 (9 wks.)

Buffalo, NY

--- In Plagiocephaly , " soleilfoo " <Iansmom22504@a...>

wrote:

> Hi I was just wondering if anyone could give me any advice on our

> appointment with the Neurosurgeon. What kinds of questions should

I

> ask and what I can expect. I would appriciate it. We had to trick

our

> pediatrician into giving us a referral for our son by scheduling

our

> appointment with the Neurosurgeon first and she says that this

> Neurosurgon isn't going to do anything for our son because she

dosn't

> feel there is a problem and she also said she has seen severe cases

> that he has turned away this worries me! My son most definatly has

> plagiocephaly his head is very flat on the right side and bulges

alot

> on the right his ears are also off. Has anyone ever run across a

> Neurosurgeon that hasn't treated it? Thank you for your help!

> -Jeannine

[Guest guest]

Christie,

Thank you for your response. The links you listed gave me some good

ideas on some questions to ask I feel a little more confident for

Ian's appointment next Wednesday.

> > Hi I was just wondering if anyone could give me any advice on our

> > appointment with the Neurosurgeon. What kinds of questions

should

> I

> > ask and what I can expect. I would appriciate it. We had to trick

> our

> > pediatrician into giving us a referral for our son by scheduling

> our

> > appointment with the Neurosurgeon first and she says that this

> > Neurosurgon isn't going to do anything for our son because she

> dosn't

> > feel there is a problem and she also said she has seen severe

> cases

> > that he has turned away this worries me! My son most definatly

has

> > plagiocephaly his head is very flat on the right side and bulges

> alot

> > on the right his ears are also off. Has anyone ever run across a

> > Neurosurgeon that hasn't treated it? Thank you for your help!

> > -Jeannine