Re: Trianglular head??- trigonocephaly

[Guest guest]

Hi ,

Not all babies with trigonocephaly have the ridge going down the

forehead. The only think I can think is maybe the ped ns you are

going to isn't all that experienced with plagio and cranio. It looks

to me like scaphocephaly. Cranial Tech is the only company that has a

band that corrects scaphocephaly. Maybe you ped ns isn't aware there

is a band to correct it. You really should join the group I told you

about. They would be more than willing to answer all of your

questions and help you out any way they can.

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Thank you all for your suggestions!! I looked up the links that

were sent,

> and pictures didn't really look like Lorenzo's head. He doesn't

have the

> ridge down the forehead. I have attached a picture... please

pardon the

> glare! :-) As you can see, from his ears back is pretty normal -

nice and

> round for the most part. But then it really narrows in front. The

front

> looks like scaphocephaly... but the back doesn't!

>

> , we live in LaGrange, KY. We saw Dr. Chariker - he is

downtown by

> the hospitals.

>

> What do y'all think??

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (2-1/2) and Lorenzo (3

mos.)

[Guest guest]

,

I meant to say the front looks like scaphocephaly. The back doesn't.

Sorry about that. I have heard of banding babies with cranio though.

> > Thank you all for your suggestions!! I looked up the links that

> were sent,

> > and pictures didn't really look like Lorenzo's head. He doesn't

> have the

> > ridge down the forehead. I have attached a picture... please

> pardon the

> > glare! :-) As you can see, from his ears back is pretty normal -

> nice and

> > round for the most part. But then it really narrows in front.

The

> front

> > looks like scaphocephaly... but the back doesn't!

> >

> > , we live in LaGrange, KY. We saw Dr. Chariker - he is

> downtown by

> > the hospitals.

> >

> > What do y'all think??

> >

> > God Bless,

> > in KY

> >

> > Wife to Bert

> > Mama to Isabelle (5), Carolina (4), (2-1/2) and Lorenzo

(3

> mos.)

[Guest guest]

-

Orthomerica has a band for scaphy too. I would really check into

cold hard facts on the orthotist's experience level and the

results. I don't believe we have heard here on this board from

someone who has used it.

Dustie had a lot of trouble with her daughter's scaphy bands and

never walked out of the door with either one of them. The first one

was enormous and the second one fell apart.

Maybe you would be able to find an ortho with scaphy experience in

your area so you wouldn't have to travel. I remember that being a

concern of yours before.

I would definitly get a second opinion. If cranio has been ruled

out, I don't understand why he would want to wait a month. That's

pretty valuable time!

Dane's mom DOC Grad

> > Thank you all for your suggestions!! I looked up the links that

> were sent,

> > and pictures didn't really look like Lorenzo's head. He doesn't

> have the

> > ridge down the forehead. I have attached a picture... please

> pardon the

> > glare! :-) As you can see, from his ears back is pretty normal -

> nice and

> > round for the most part. But then it really narrows in front.

The

> front

> > looks like scaphocephaly... but the back doesn't!

> >

> > , we live in LaGrange, KY. We saw Dr. Chariker - he is

> downtown by

> > the hospitals.

> >

> > What do y'all think??

> >

> > God Bless,

> > in KY

> >

> > Wife to Bert

> > Mama to Isabelle (5), Carolina (4), (2-1/2) and Lorenzo

(3

> mos.)

[Guest guest]

,

I mentioned scaphocephaly to this doctor, and he just dismissed it

and said " Nope, it's not scaphocephaly. The back is fine. It looks

to me more like trigonocephaly. A helmet won't do any good for

trigonocephaly. " Now at the time, I didn't realize that

trigonocephaly was a form of cranio... I just thought it was another

type of plagio that I hadn't heard of, so I didn't really question

it. Do you think that the doctor that read the CT scan at the

hospital in mid-December might have been mistaken about the sutures

not being fused?

Judging from pictures around the place (lot of cuties in helmets), it

seemed that this plastic surgeon was pretty knowledgable... Gosh, I

just don't know! :-) We have another appointment with him in a

month. We're supposed to bring the xrays (done in Nov.) and CT scan

(done in Dec) with us.

What should I do? ask? etc.

in KY

>

> > Hi ,

> > Not all babies with trigonocephaly have the ridge going down the

> > forehead. The only think I can think is maybe the ped ns you are

> > going to isn't all that experienced with plagio and cranio. It

> looks

> > to me like scaphocephaly. Cranial Tech is the only company that

has

> a

> > band that corrects scaphocephaly. Maybe you ped ns isn't aware

> there

> > is a band to correct it. You really should join the group I told

> you

> > about. They would be more than willing to answer all of your

> > questions and help you out any way they can.

> >

[Guest guest]

,

The front looks like scaphocephaly but that's it. That is why he said

no. What I don't understand is why wait a month. Craino isn't

something to wait around about. It is possible that the scans were

read wrong. I really don't mean to scare you but sometimes just

saying it is better than beating around the bush. It does look to me

like his metopic suture is fused. I'm far from a doctor, just a Mom

who reads a lot. When the road to plagio started for me, I read all I

could about cranio b/c at the time they didn't know if is was cranio

or plagio. Please get a second opinion for a ped neurosurgeon!!

Did you get the email I sent to you? Feel free to email me anytime.

> > > Hi ,

> > > Not all babies with trigonocephaly have the ridge going down

the

> > > forehead. The only think I can think is maybe the ped ns you

are

> > > going to isn't all that experienced with plagio and cranio. It

> > looks

> > > to me like scaphocephaly. Cranial Tech is the only company that

> has

> > a

> > > band that corrects scaphocephaly. Maybe you ped ns isn't aware

> > there

> > > is a band to correct it. You really should join the group I

told

> > you

> > > about. They would be more than willing to answer all of your

> > > questions and help you out any way they can.

> > >

[Guest guest]

-

I wouldn't wait a month. If it is cranio, get him in ASAP! You may

want to try the craniosynostosis boards. Someone over there may

have more info.

Please keep us posted!

Dane's mom DOC Grad

> > > Hi ,

> > > Not all babies with trigonocephaly have the ridge going down

the

> > > forehead. The only think I can think is maybe the ped ns you

are

> > > going to isn't all that experienced with plagio and cranio. It

> > looks

> > > to me like scaphocephaly. Cranial Tech is the only company

that

> has

> > a

> > > band that corrects scaphocephaly. Maybe you ped ns isn't aware

> > there

> > > is a band to correct it. You really should join the group I

told

> > you

> > > about. They would be more than willing to answer all of your

> > > questions and help you out any way they can.

> > >

[Guest guest]

,

This doctor agrees that scaphocephaly is treatable with a helmet, but

he doesn't think that Lorenzo has scaphy. He said that Lorenzo had a

triangular head and not an elongated head. Argh! What to do, what

to do... He was referred by our pediatrician. I don't even know how

to go about a 2nd opinion.

in KY

> -

> Orthomerica has a band for scaphy too. I would really check into

> cold hard facts on the orthotist's experience level and the

> results. I don't believe we have heard here on this board from

> someone who has used it.

> Dustie had a lot of trouble with her daughter's scaphy bands and

> never walked out of the door with either one of them. The first

one

> was enormous and the second one fell apart.

> Maybe you would be able to find an ortho with scaphy experience in

> your area so you wouldn't have to travel. I remember that being a

> concern of yours before.

> I would definitly get a second opinion. If cranio has been ruled

> out, I don't understand why he would want to wait a month. That's

> pretty valuable time!

>

> Dane's mom DOC Grad

[Guest guest]

,

From what I understand you have a legal right to get a second opinion

and your ins co would have to pay for it!! Look in you ins book under

ped ns and then head over to the cranio board I told you about. See

if any of the ns in your book has been used by any parents over there.

> > -

> > Orthomerica has a band for scaphy too. I would really check into

> > cold hard facts on the orthotist's experience level and the

> > results. I don't believe we have heard here on this board from

> > someone who has used it.

> > Dustie had a lot of trouble with her daughter's scaphy bands and

> > never walked out of the door with either one of them. The first

> one

> > was enormous and the second one fell apart.

> > Maybe you would be able to find an ortho with scaphy experience

in

> > your area so you wouldn't have to travel. I remember that being

a

> > concern of yours before.

> > I would definitly get a second opinion. If cranio has been ruled

> > out, I don't understand why he would want to wait a month.

That's

> > pretty valuable time!

> >

> > Dane's mom DOC Grad

[Guest guest]

I'm sorry I'm late coming into this conversation. I have something

to say. *raising hand* This head looks just like 's did before

treatment and she was diagnosed with Scaphy! Oh my, I think I just

helped someone else.

Dustie, mom to , DOCband 12/23/02

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Thank you all for your suggestions!! I looked up the links that

were sent,

> and pictures didn't really look like Lorenzo's head. He doesn't

have the

> ridge down the forehead. I have attached a picture... please

pardon the

> glare! :-) As you can see, from his ears back is pretty normal -

nice and

> round for the most part. But then it really narrows in front. The

front

> looks like scaphocephaly... but the back doesn't!

>

> , we live in LaGrange, KY. We saw Dr. Chariker - he is

downtown by

> the hospitals.

>

> What do y'all think??

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (2-1/2) and Lorenzo (3

mos.)

[Guest guest]

Hi ,

I agree with everyone that it looks like the pictures I've seen of

scaphalocephaly, not trigono. Can you get a second opinion? I think I

read somewhere (here?) that DOC band now does a band for scaphalo,

but that STAR bands and passive helmets don't. But I'm not sure about

that. I know that the closest DOC band centers to us are Cleveland

and Chicago -- a ways away.

We are in Hanover, IN. We saw Dr. Moriarity of Neurosurgical

Associates next to Kosair. We had a helmet made at the Center for

Orthotic and Prosthetic Care in New Albany, IN. never

tolerated it, so we were out of luck, but I think we were an unusual

case.

-

mom to

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Thank you all for your suggestions!! I looked up the links that

were sent,

> and pictures didn't really look like Lorenzo's head. He doesn't

have the

> ridge down the forehead. I have attached a picture... please

pardon the

> glare! :-) As you can see, from his ears back is pretty normal -

nice and

> round for the most part. But then it really narrows in front. The

front

> looks like scaphocephaly... but the back doesn't!

>

> , we live in LaGrange, KY. We saw Dr. Chariker - he is

downtown by

> the hospitals.

>

> What do y'all think??

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (2-1/2) and Lorenzo (3

mos.)