CHARALET:Re: Older plagio getting assessed at CT - help needed...

[Guest guest]

Hi there

I'm sure you have had this question answered already, but I just

thought I'd add that CT only band up til 20-22 months (usually

starting not much later than 18 in practice) as the head doesn't

grow much after this. The bands work by evening out the appearance

of the skull though new growth into the flat areas, which is why

with the best will in the world they simply can't design bands after

this age, the growth window has closed.

Surgery is only usually an option (and I don't think CT do it

anyway) if the plagio is really severe/there is an issue with brain

growth (and there rarely is with plagio)/or the appearance is such

there might be psycho-social problems for the child. But this is

really quite unusual these days. I also think surgery could actually

draw an older and more aware child's attention to the problem and

make them self-conscious about their appearance, which would create

the very problem it is designed to solve (something pointed out to

us recently by someone who had her ears pinned back and was teased

mercilessly by her schoolmates for this reason, not the ears!).

Let us know what they say, I just hope that they haven't raised your

hopes too much as banding really won't be an option past 18 months-2

years, which must seem really unfair. Let's hope it does turn out to

be mild and that they manage to put your mind at rest.

Hannah (mum to Lucia, London, UK)

Cranio grad

> Hey Carol, I don't mind posting...

>

> My son will be 3 in July, he's never been " officially " diagnosed

by anyone other than myself. He's had 4 peds in his short little

life and none of them think he's very bad off - But I know alot of

Docs simply don't know about plagio yet... So, since it's a free

consult, since I will be in Chicago anyway, I asked if they'd take a

look, make an assessment and let me know what they think from there.

>

> I am hoping that they say I am over reacting and his case is

indeed mild. But if they say he's moderate to severe and would be

eligible for surgery, then maybe we'll consider that. (doubt it,

but maybe) If nothing else - I am doing it for my own peace of mind.

>

> The gal that made the appointment stated very clearly that this is

unusual and that they don't band at his age. I'm fine with that. I

just want the assessment so I know what we have to deal with.

>

> And MAYBE - it will be interesting to them for future reference.

Face it, the medical field is a BUSINESS. I expect if enough

parents demand helmeting for 18m - 4yo, some company somewhere will

research it and provide it... May not be helpful, but who knows...

it's all still to new for anyone to say one way or the other.

>

> I guess I'd like to know: How bad off is it, what are the

measurements and what " should " they be, how much can I expect it to

round out yet, why don't they band after 18mo? What do they think

of CO? What do they think caused it? Are they finding that babies

with bigger heads are more susceptible to plagio? etc...

>

> What else should I ask them?

> CHARALET:Re: Older plagio getting assessed at

CT - help needed...

>

>

> Charalet,

> How exciting! If you don't mind me asking, what did CT tell you.

I

> know he is three and they usually don't band over 20 months, so

I am

> curious if they are bringing him in to help you know what you

can do

> at this point or what. I can help you with questions better if I

know

> what the consult is for. Can you share the details with me? You

can e-

> mail me if you want too.

> CAROLG

>

>

>

>

>

>

>

>

>

>

>

> --- In Plagiocephaly , " xzvhfh2 " <cjd10@c...>

wrote:

> > Hey All,

> > Well, I am finally taking the plunge.

> >

> > Back ground: I first noticed the plagio at 6 weeks, but the

peds

> > fluffed us off. Last Fall, my nephew was diagnosed with Torti

&

> > Plagio - that's the first I knew the " flat spot " had a medical

> > name... As I researched further I learned that I missed out

on a

> lot

> > of options and am still working through the whole thing.

> >

> > I have given myself until 9/1/05 to dig into it and kinda

> > be " consumed " by it. So I finally was able to schedule an

> > appointment with Cranial Technologies in Chicago. I'll be

meeting

> > with Kay McGuire about my 3yo's head shape.

> >

> > So, between now and then - I need to get prepared...

> > Anyone else take an older child with plagio to CT to get

assessed?

> > Tell me about it.

> >

> > What questions should I ask?

> > What can I expect?

> > Anything anyone hear wants to know that I can post after our

> > appointment?

> >

> > I am scheduled for 7/21/05 - yes, it's months away, but I

scheduled

> > it to fit with my trip back to the grandparents home since

there

> > isn't a CT near us in Oregon. I did post this in the

olderplag

> group.

> >

> > Look forward to your reply. Thanks.

> > Charalet

> > Mom to athan, almost 3yo - unresolved Plagio

> > Mom to , 5mo

> > Auntie to Eli, 9mo - Torti, plagio, Starband 3/05

>

>

>

>

> For more plagio info

[Guest guest]

Hi there

I'm sure you have had this question answered already, but I just

thought I'd add that CT only band up til 20-22 months (usually

starting not much later than 18 in practice) as the head doesn't

grow much after this. The bands work by evening out the appearance

of the skull though new growth into the flat areas, which is why

with the best will in the world they simply can't design bands after

this age, the growth window has closed.

Surgery is only usually an option (and I don't think CT do it

anyway) if the plagio is really severe/there is an issue with brain

growth (and there rarely is with plagio)/or the appearance is such

there might be psycho-social problems for the child. But this is

really quite unusual these days. I also think surgery could actually

draw an older and more aware child's attention to the problem and

make them self-conscious about their appearance, which would create

the very problem it is designed to solve (something pointed out to

us recently by someone who had her ears pinned back and was teased

mercilessly by her schoolmates for this reason, not the ears!).

Let us know what they say, I just hope that they haven't raised your

hopes too much as banding really won't be an option past 18 months-2

years, which must seem really unfair. Let's hope it does turn out to

be mild and that they manage to put your mind at rest.

Hannah (mum to Lucia, London, UK)

Cranio grad

> Hey Carol, I don't mind posting...

>

> My son will be 3 in July, he's never been " officially " diagnosed

by anyone other than myself. He's had 4 peds in his short little

life and none of them think he's very bad off - But I know alot of

Docs simply don't know about plagio yet... So, since it's a free

consult, since I will be in Chicago anyway, I asked if they'd take a

look, make an assessment and let me know what they think from there.

>

> I am hoping that they say I am over reacting and his case is

indeed mild. But if they say he's moderate to severe and would be

eligible for surgery, then maybe we'll consider that. (doubt it,

but maybe) If nothing else - I am doing it for my own peace of mind.

>

> The gal that made the appointment stated very clearly that this is

unusual and that they don't band at his age. I'm fine with that. I

just want the assessment so I know what we have to deal with.

>

> And MAYBE - it will be interesting to them for future reference.

Face it, the medical field is a BUSINESS. I expect if enough

parents demand helmeting for 18m - 4yo, some company somewhere will

research it and provide it... May not be helpful, but who knows...

it's all still to new for anyone to say one way or the other.

>

> I guess I'd like to know: How bad off is it, what are the

measurements and what " should " they be, how much can I expect it to

round out yet, why don't they band after 18mo? What do they think

of CO? What do they think caused it? Are they finding that babies

with bigger heads are more susceptible to plagio? etc...

>

> What else should I ask them?

> CHARALET:Re: Older plagio getting assessed at

CT - help needed...

>

>

> Charalet,

> How exciting! If you don't mind me asking, what did CT tell you.

I

> know he is three and they usually don't band over 20 months, so

I am

> curious if they are bringing him in to help you know what you

can do

> at this point or what. I can help you with questions better if I

know

> what the consult is for. Can you share the details with me? You

can e-

> mail me if you want too.

> CAROLG

>

>

>

>

>

>

>

>

>

>

>

> --- In Plagiocephaly , " xzvhfh2 " <cjd10@c...>

wrote:

> > Hey All,

> > Well, I am finally taking the plunge.

> >

> > Back ground: I first noticed the plagio at 6 weeks, but the

peds

> > fluffed us off. Last Fall, my nephew was diagnosed with Torti

&

> > Plagio - that's the first I knew the " flat spot " had a medical

> > name... As I researched further I learned that I missed out

on a

> lot

> > of options and am still working through the whole thing.

> >

> > I have given myself until 9/1/05 to dig into it and kinda

> > be " consumed " by it. So I finally was able to schedule an

> > appointment with Cranial Technologies in Chicago. I'll be

meeting

> > with Kay McGuire about my 3yo's head shape.

> >

> > So, between now and then - I need to get prepared...

> > Anyone else take an older child with plagio to CT to get

assessed?

> > Tell me about it.

> >

> > What questions should I ask?

> > What can I expect?

> > Anything anyone hear wants to know that I can post after our

> > appointment?

> >

> > I am scheduled for 7/21/05 - yes, it's months away, but I

scheduled

> > it to fit with my trip back to the grandparents home since

there

> > isn't a CT near us in Oregon. I did post this in the

olderplag

> group.

> >

> > Look forward to your reply. Thanks.

> > Charalet

> > Mom to athan, almost 3yo - unresolved Plagio

> > Mom to , 5mo

> > Auntie to Eli, 9mo - Torti, plagio, Starband 3/05

>

>

>

>

> For more plagio info