Re: Feeling Worse... A Catch 22

[Guest guest]

Hello. As far as the CT scan is concerned... not all Doctors require

them/order them before they will prescribe a band, but many do that

(kinda as a " cover their butt " kinda thing... to make sure for

certain that no cranio is involved). If there is any cranio present,

then banding a child we do no good and may only make things worse,

since cranio usually requires some sort of surgery. As far as

regular x-rays... they CAN see cranio on an x -ray sometimes,

although the best way is by doing a 3D CT scan since it sees things

in much more detail. My Daughter, , had a CT scan (regular and

3D) when she was 6 Months old (to rule out cranio). She has a

prominent metopic ridge and had they just done x-rays, she would have

looked like she had metopic cranio. You could only see that her

metopic was in fact not fused in the 3D CT scan. To the best of my

knowledge, there haven't been any definitive studies that indicate

that CT scans are risky as far as the radiation.

You are right, that there is no guarantee that your Daughter's head

will round out on its own. It's unfortunate that Doctors often say

that it will take care of itself over time. I actually have a good

friend whose Son had what I would say was severe plagio when he was

very little. Although it has rounded out some on its own, he is now

4 and you can see that his head is mishappen, his ears are off and he

has some facial asymmetry. You really have to go with your gut on

this and push for the band (the sooner the better) if that is what

you want to do. Don't let a Dr pass you off and change your mind if

you feel that you want to get her banded.

Good luck and keep us updated on everything.

Jen

(19 mo), tort resolved, Hanger Band Grad

(4 years)

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its own).

The Dr. today believes that Syds plagio is positional, but will not

treat her without an official diagnosis. I understand that she is

only being prudent in not wanting to mold her without being assured

it's not cranio, but she also told me that she is not pro band. She

would not do any measurements, but took photos and said that we could

come back in two months to see if it's gotten better or worse. She

said she might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this decision,

but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an MRI

or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle when

they thought it was broken, but she says no. I could have sworn that

I'd seen postings where children had MRIs and x-rays rather than CT

scans. I believe that the CT scan shows greater detail, but thought

that they could at least rule out cranio using one of the other

methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

Hello. As far as the CT scan is concerned... not all Doctors require

them/order them before they will prescribe a band, but many do that

(kinda as a " cover their butt " kinda thing... to make sure for

certain that no cranio is involved). If there is any cranio present,

then banding a child we do no good and may only make things worse,

since cranio usually requires some sort of surgery. As far as

regular x-rays... they CAN see cranio on an x -ray sometimes,

although the best way is by doing a 3D CT scan since it sees things

in much more detail. My Daughter, , had a CT scan (regular and

3D) when she was 6 Months old (to rule out cranio). She has a

prominent metopic ridge and had they just done x-rays, she would have

looked like she had metopic cranio. You could only see that her

metopic was in fact not fused in the 3D CT scan. To the best of my

knowledge, there haven't been any definitive studies that indicate

that CT scans are risky as far as the radiation.

You are right, that there is no guarantee that your Daughter's head

will round out on its own. It's unfortunate that Doctors often say

that it will take care of itself over time. I actually have a good

friend whose Son had what I would say was severe plagio when he was

very little. Although it has rounded out some on its own, he is now

4 and you can see that his head is mishappen, his ears are off and he

has some facial asymmetry. You really have to go with your gut on

this and push for the band (the sooner the better) if that is what

you want to do. Don't let a Dr pass you off and change your mind if

you feel that you want to get her banded.

Good luck and keep us updated on everything.

Jen

(19 mo), tort resolved, Hanger Band Grad

(4 years)

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its own).

The Dr. today believes that Syds plagio is positional, but will not

treat her without an official diagnosis. I understand that she is

only being prudent in not wanting to mold her without being assured

it's not cranio, but she also told me that she is not pro band. She

would not do any measurements, but took photos and said that we could

come back in two months to see if it's gotten better or worse. She

said she might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this decision,

but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an MRI

or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle when

they thought it was broken, but she says no. I could have sworn that

I'd seen postings where children had MRIs and x-rays rather than CT

scans. I believe that the CT scan shows greater detail, but thought

that they could at least rule out cranio using one of the other

methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

Hi Jen, Thanks to you for your feedback as well. I really wish that I could find a Dr. that will work with us. Despite the stress that I know would come with the band, we would at least know that we'd tried everything. My situation feels so different from the rest of the Group's in that I don't feel like the Drs. are giving us an opportunity to make the decision for ourselves. They all just keep saying that it will round out on its own, which I know in my gut I don't trust. There seems to be a shortage of orthotists in Nashville, as well as Drs. with experience dealing with plagio. I guess if it gets worse and we can't find anyone local to work with, we may have to see about going to Charlotte to CT. I just don't know how feasible this is, as we'd have to fly there frequently and it would be very expensive. Our deal is that we HAVE to have a Dr. to work with to direct the orthotist. The

orthos here apparently take their direction from the Dr. and make adjustments accordingly. This is weird, I know, and very different from the stories that I've heard everyone else describe. I'm just going to keep praying on it and hope we can find what we are looking for before it's too late to do anything about it. Your point about the time factor is well taken. I'm glad that you achieved a good result with . Thanks again for your comments. Best, (Sydney, 6 months, plagio not yet treated)Jen <ronandjenvelez@...> wrote: Hello. As far as the CT scan is concerned... not all Doctors require them/order them before they will prescribe a band, but many do that (kinda as a "cover their

butt" kinda thing... to make sure for certain that no cranio is involved). If there is any cranio present, then banding a child we do no good and may only make things worse, since cranio usually requires some sort of surgery. As far as regular x-rays... they CAN see cranio on an x -ray sometimes, although the best way is by doing a 3D CT scan since it sees things in much more detail. My Daughter, , had a CT scan (regular and 3D) when she was 6 Months old (to rule out cranio). She has a prominent metopic ridge and had they just done x-rays, she would have looked like she had metopic cranio. You could only see that her metopic was in fact not fused in the 3D CT scan. To the best of my knowledge, there haven't been any definitive studies that indicate that CT scans are risky as far as the radiation. You are right, that there is no guarantee that your Daughter's head will round out

on its own. It's unfortunate that Doctors often say that it will take care of itself over time. I actually have a good friend whose Son had what I would say was severe plagio when he was very little. Although it has rounded out some on its own, he is now 4 and you can see that his head is mishappen, his ears are off and he has some facial asymmetry. You really have to go with your gut on this and push for the band (the sooner the better) if that is what you want to do. Don't let a Dr pass you off and change your mind if you feel that you want to get her banded. Good luck and keep us updated on everything.Jen (19 mo), tort resolved, Hanger Band Grad (4 years)>> Hello everyone,> > Well, after waiting another month and hoping to

get some resolution or relief on Sydney's head we saw the plastic surgeon today and I feel even worse! I was hoping that she'd recommend a band/helmut without having to do a CT scan, but she said that she would definitely have to have one to rule out craniosynostinosis. Ugh. We were going to her for our third opinion (we've seen the neuro and he thought she did NOT have cranio and discounted her plagio and the Ped is determined that it will round out on its own). The Dr. today believes that Syds plagio is positional, but will not treat her without an official diagnosis. I understand that she is only being prudent in not wanting to mold her without being assured it's not cranio, but she also told me that she is not pro band. She would not do any measurements, but took photos and said that we could come back in two months to see if it's gotten better or worse. She said she might feel more

confident making a decision at that point> without the CT scan, given some additional growth. I really didn't want to wait and lose more time on the flattening and asymmetry, but don't feel we have any other options now because we are not comfortable with doing the CT scan. I guess I just have to accept now that we are in fact limiting our options by this decision, but I am sooooooo stressed out. > > While I know that several of your children have had CT scans and I respect everyone's personal choice, my husband and I are very opposed to this idea due to the radiation factor. We thought that perhaps the doctor could get a visual and rule out cranio with an MRI or plain old x-ray. She told us today that wasn't the case. I thought MRIs could also show bone, as I had one done on my ankle when they thought it was broken, but she says no. I could

have sworn that I'd seen postings where children had MRIs and x-rays rather than CT scans. I believe that the CT scan shows greater detail, but thought that they could at least rule out cranio using one of the other methods. Am I barking up the wrong tree here? > > In addition to the flattening, I'm worried about two very flat spots on the top of either side of her head. I asked the Dr. about these and she didn't seem to think that these would necessarily go away even if the head rounds out. Oh, she did say that given some more time she thought the back of the head would round out. I just wish I had the confidence of the Drs. that we've spoken to and it would be great if it does, but I just don't want to have to rely on this happening and have no other options. I'm beginning to feel hopeless now... When I asked her to characterize her

head, she said she thought it was mild. This is a good thing, but I still am not happy with her current head shape, as it is obviously flat. Don't know where to go from here. > > As always, I appreciate your feedback. > > Thanks!> > Best,> > > (Sydney, six months, flattening and asymmetry)> > > ---------------------------------> > Use Photomail to share photos without annoying attachments.>

Use Photomail to share photos without annoying attachments.

[Guest guest]

Hi Jen, Thanks to you for your feedback as well. I really wish that I could find a Dr. that will work with us. Despite the stress that I know would come with the band, we would at least know that we'd tried everything. My situation feels so different from the rest of the Group's in that I don't feel like the Drs. are giving us an opportunity to make the decision for ourselves. They all just keep saying that it will round out on its own, which I know in my gut I don't trust. There seems to be a shortage of orthotists in Nashville, as well as Drs. with experience dealing with plagio. I guess if it gets worse and we can't find anyone local to work with, we may have to see about going to Charlotte to CT. I just don't know how feasible this is, as we'd have to fly there frequently and it would be very expensive. Our deal is that we HAVE to have a Dr. to work with to direct the orthotist. The

orthos here apparently take their direction from the Dr. and make adjustments accordingly. This is weird, I know, and very different from the stories that I've heard everyone else describe. I'm just going to keep praying on it and hope we can find what we are looking for before it's too late to do anything about it. Your point about the time factor is well taken. I'm glad that you achieved a good result with . Thanks again for your comments. Best, (Sydney, 6 months, plagio not yet treated)Jen <ronandjenvelez@...> wrote: Hello. As far as the CT scan is concerned... not all Doctors require them/order them before they will prescribe a band, but many do that (kinda as a "cover their

butt" kinda thing... to make sure for certain that no cranio is involved). If there is any cranio present, then banding a child we do no good and may only make things worse, since cranio usually requires some sort of surgery. As far as regular x-rays... they CAN see cranio on an x -ray sometimes, although the best way is by doing a 3D CT scan since it sees things in much more detail. My Daughter, , had a CT scan (regular and 3D) when she was 6 Months old (to rule out cranio). She has a prominent metopic ridge and had they just done x-rays, she would have looked like she had metopic cranio. You could only see that her metopic was in fact not fused in the 3D CT scan. To the best of my knowledge, there haven't been any definitive studies that indicate that CT scans are risky as far as the radiation. You are right, that there is no guarantee that your Daughter's head will round out

on its own. It's unfortunate that Doctors often say that it will take care of itself over time. I actually have a good friend whose Son had what I would say was severe plagio when he was very little. Although it has rounded out some on its own, he is now 4 and you can see that his head is mishappen, his ears are off and he has some facial asymmetry. You really have to go with your gut on this and push for the band (the sooner the better) if that is what you want to do. Don't let a Dr pass you off and change your mind if you feel that you want to get her banded. Good luck and keep us updated on everything.Jen (19 mo), tort resolved, Hanger Band Grad (4 years)>> Hello everyone,> > Well, after waiting another month and hoping to

get some resolution or relief on Sydney's head we saw the plastic surgeon today and I feel even worse! I was hoping that she'd recommend a band/helmut without having to do a CT scan, but she said that she would definitely have to have one to rule out craniosynostinosis. Ugh. We were going to her for our third opinion (we've seen the neuro and he thought she did NOT have cranio and discounted her plagio and the Ped is determined that it will round out on its own). The Dr. today believes that Syds plagio is positional, but will not treat her without an official diagnosis. I understand that she is only being prudent in not wanting to mold her without being assured it's not cranio, but she also told me that she is not pro band. She would not do any measurements, but took photos and said that we could come back in two months to see if it's gotten better or worse. She said she might feel more

confident making a decision at that point> without the CT scan, given some additional growth. I really didn't want to wait and lose more time on the flattening and asymmetry, but don't feel we have any other options now because we are not comfortable with doing the CT scan. I guess I just have to accept now that we are in fact limiting our options by this decision, but I am sooooooo stressed out. > > While I know that several of your children have had CT scans and I respect everyone's personal choice, my husband and I are very opposed to this idea due to the radiation factor. We thought that perhaps the doctor could get a visual and rule out cranio with an MRI or plain old x-ray. She told us today that wasn't the case. I thought MRIs could also show bone, as I had one done on my ankle when they thought it was broken, but she says no. I could

have sworn that I'd seen postings where children had MRIs and x-rays rather than CT scans. I believe that the CT scan shows greater detail, but thought that they could at least rule out cranio using one of the other methods. Am I barking up the wrong tree here? > > In addition to the flattening, I'm worried about two very flat spots on the top of either side of her head. I asked the Dr. about these and she didn't seem to think that these would necessarily go away even if the head rounds out. Oh, she did say that given some more time she thought the back of the head would round out. I just wish I had the confidence of the Drs. that we've spoken to and it would be great if it does, but I just don't want to have to rely on this happening and have no other options. I'm beginning to feel hopeless now... When I asked her to characterize her

head, she said she thought it was mild. This is a good thing, but I still am not happy with her current head shape, as it is obviously flat. Don't know where to go from here. > > As always, I appreciate your feedback. > > Thanks!> > Best,> > > (Sydney, six months, flattening and asymmetry)> > > ---------------------------------> > Use Photomail to share photos without annoying attachments.>

Use Photomail to share photos without annoying attachments.

[Guest guest]

Hey ,

I just find it amazing at most PEDs and Neuro's reluctance to do band

when I honestly don't see how there is any liability for them?!?

What's it to them? Your situation in Nashville sounds pretty

difficult. Did you ask the cranio what would be the cons of banding

now(after they rule out craniostynosis)? Did you ask her what her

" medical " reason for not banding in mild Plagio is? I think it's very

important to distinguish between a Medical reason and her Personal

Preference. My PED's opinion was that if it bothered ME then I should

do something. I think it's crazy that you've been to 3 Drs and are

back a square one! Do you know anyone else in Nashville who's had a

helmet/band? Maybe if you find other mom's close by(there might be

some on this board)then they could tell you how they got it done! Good

luck and keep us posted!

Bye, (Max DOCbanded 2/7)

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon today

and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the neuro

and he thought she did NOT have cranio and discounted her plagio and

the Ped is determined that it will round out on its own). The Dr.

today believes that Syds plagio is positional, but will not treat her

without an official diagnosis. I understand that she is only being

prudent in not wanting to mold her without being assured it's not

cranio, but she also told me that she is not pro band. She would not

do any measurements, but took photos and said that we could come back

in two months to see if it's gotten better or worse. She said she

might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really didn't

want to wait and lose more time on the flattening and asymmetry, but

don't feel we have any other options now because we are not

comfortable with doing the CT scan. I guess I just have to accept now

that we are in fact limiting our options by thisdecision, but I am

sooooooo stressed out.

>

> While I know that several of your children have had CT scans and I

respect everyone's personal choice, my husband and I are very opposed

to this idea due to the radiation factor. We thought that perhaps the

doctor could get a visual and rule out cranio with an MRI or plain old

x-ray. She told us today that wasn't the case. I thought MRIs could

also show bone, as I had one done on my ankle when they thought it was

broken, but she says no. I could have sworn that I'd seen postings

where children had MRIs and x-rays rather than CT scans. I believe

that the CT scan shows greater detail, but thought that they could at

least rule out cranio using one of the other methods. Am I barking up

the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

Hey ,

I just find it amazing at most PEDs and Neuro's reluctance to do band

when I honestly don't see how there is any liability for them?!?

What's it to them? Your situation in Nashville sounds pretty

difficult. Did you ask the cranio what would be the cons of banding

now(after they rule out craniostynosis)? Did you ask her what her

" medical " reason for not banding in mild Plagio is? I think it's very

important to distinguish between a Medical reason and her Personal

Preference. My PED's opinion was that if it bothered ME then I should

do something. I think it's crazy that you've been to 3 Drs and are

back a square one! Do you know anyone else in Nashville who's had a

helmet/band? Maybe if you find other mom's close by(there might be

some on this board)then they could tell you how they got it done! Good

luck and keep us posted!

Bye, (Max DOCbanded 2/7)

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon today

and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the neuro

and he thought she did NOT have cranio and discounted her plagio and

the Ped is determined that it will round out on its own). The Dr.

today believes that Syds plagio is positional, but will not treat her

without an official diagnosis. I understand that she is only being

prudent in not wanting to mold her without being assured it's not

cranio, but she also told me that she is not pro band. She would not

do any measurements, but took photos and said that we could come back

in two months to see if it's gotten better or worse. She said she

might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really didn't

want to wait and lose more time on the flattening and asymmetry, but

don't feel we have any other options now because we are not

comfortable with doing the CT scan. I guess I just have to accept now

that we are in fact limiting our options by thisdecision, but I am

sooooooo stressed out.

>

> While I know that several of your children have had CT scans and I

respect everyone's personal choice, my husband and I are very opposed

to this idea due to the radiation factor. We thought that perhaps the

doctor could get a visual and rule out cranio with an MRI or plain old

x-ray. She told us today that wasn't the case. I thought MRIs could

also show bone, as I had one done on my ankle when they thought it was

broken, but she says no. I could have sworn that I'd seen postings

where children had MRIs and x-rays rather than CT scans. I believe

that the CT scan shows greater detail, but thought that they could at

least rule out cranio using one of the other methods. Am I barking up

the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

I have to agree with 's point about medical reason vs. personal

opinion. I am sure a dr can't refuse your child treatment simply

because they don't son't personally agree with banding or because

they aren't informed enough to look beyond the archaiec, " it will

round out on its own " theory. Please go with your gut. If you

think your child needs a band then please keep at it.

Becky

, repo grad

Pittsburgh, PA

> >

> > Hello everyone,

> >

> > Well, after waiting another month and hoping to get some

> resolution or relief on Sydney's head we saw the plastic surgeon

today

> and I feel even worse! I was hoping that she'd recommend a

> band/helmut without having to do a CT scan, but she said that she

> would definitely have to have one to rule out craniosynostinosis.

> Ugh. We were going to her for our third opinion (we've seen the

neuro

> and he thought she did NOT have cranio and discounted her plagio

and

> the Ped is determined that it will round out on its own). The Dr.

> today believes that Syds plagio is positional, but will not treat

her

> without an official diagnosis. I understand that she is only being

> prudent in not wanting to mold her without being assured it's not

> cranio, but she also told me that she is not pro band. She would

not

> do any measurements, but took photos and said that we could come

back

> in two months to see if it's gotten better or worse. She said she

> might feel more confident making a decision at that point

> > without the CT scan, given some additional growth. I really

didn't

> want to wait and lose more time on the flattening and asymmetry,

but

> don't feel we have any other options now because we are not

> comfortable with doing the CT scan. I guess I just have to accept

now

> that we are in fact limiting our options by thisdecision, but I am

> sooooooo stressed out.

> >

> > While I know that several of your children have had CT scans

and I

> respect everyone's personal choice, my husband and I are very

opposed

> to this idea due to the radiation factor. We thought that perhaps

the

> doctor could get a visual and rule out cranio with an MRI or plain

old

> x-ray. She told us today that wasn't the case. I thought MRIs

could

> also show bone, as I had one done on my ankle when they thought it

was

> broken, but she says no. I could have sworn that I'd seen postings

> where children had MRIs and x-rays rather than CT scans. I believe

> that the CT scan shows greater detail, but thought that they could

at

> least rule out cranio using one of the other methods. Am I

barking up

> the wrong tree here?

> >

> > In addition to the flattening, I'm worried about two very flat

> spots on the top of either side of her head. I asked the Dr. about

> these and she didn't seem to think that these would necessarily go

> away even if the head rounds out. Oh, she did say that given some

> more time she thought the back of the head would round out. I

just

> wish I had the confidence of the Drs. that we've spoken to and it

> would be great if it does, but I just don't want to have to rely on

> this happening and have no other options. I'm beginning to feel

> hopeless now... When I asked her to characterize her head, she

said

> she thought it was mild. This is a good thing, but I still am not

> happy with her current head shape, as it is obviously flat. Don't

> know where to go from here.

> >

> > As always, I appreciate your feedback.

> >

> > Thanks!

> >

> > Best,

> >

> >

> > (Sydney, six months, flattening and asymmetry)

> >

> >

> > ---------------------------------

> >

> > Use Photomail to share photos without annoying attachments.

> >

>

[Guest guest]

I have to agree with 's point about medical reason vs. personal

opinion. I am sure a dr can't refuse your child treatment simply

because they don't son't personally agree with banding or because

they aren't informed enough to look beyond the archaiec, " it will

round out on its own " theory. Please go with your gut. If you

think your child needs a band then please keep at it.

Becky

, repo grad

Pittsburgh, PA

> >

> > Hello everyone,

> >

> > Well, after waiting another month and hoping to get some

> resolution or relief on Sydney's head we saw the plastic surgeon

today

> and I feel even worse! I was hoping that she'd recommend a

> band/helmut without having to do a CT scan, but she said that she

> would definitely have to have one to rule out craniosynostinosis.

> Ugh. We were going to her for our third opinion (we've seen the

neuro

> and he thought she did NOT have cranio and discounted her plagio

and

> the Ped is determined that it will round out on its own). The Dr.

> today believes that Syds plagio is positional, but will not treat

her

> without an official diagnosis. I understand that she is only being

> prudent in not wanting to mold her without being assured it's not

> cranio, but she also told me that she is not pro band. She would

not

> do any measurements, but took photos and said that we could come

back

> in two months to see if it's gotten better or worse. She said she

> might feel more confident making a decision at that point

> > without the CT scan, given some additional growth. I really

didn't

> want to wait and lose more time on the flattening and asymmetry,

but

> don't feel we have any other options now because we are not

> comfortable with doing the CT scan. I guess I just have to accept

now

> that we are in fact limiting our options by thisdecision, but I am

> sooooooo stressed out.

> >

> > While I know that several of your children have had CT scans

and I

> respect everyone's personal choice, my husband and I are very

opposed

> to this idea due to the radiation factor. We thought that perhaps

the

> doctor could get a visual and rule out cranio with an MRI or plain

old

> x-ray. She told us today that wasn't the case. I thought MRIs

could

> also show bone, as I had one done on my ankle when they thought it

was

> broken, but she says no. I could have sworn that I'd seen postings

> where children had MRIs and x-rays rather than CT scans. I believe

> that the CT scan shows greater detail, but thought that they could

at

> least rule out cranio using one of the other methods. Am I

barking up

> the wrong tree here?

> >

> > In addition to the flattening, I'm worried about two very flat

> spots on the top of either side of her head. I asked the Dr. about

> these and she didn't seem to think that these would necessarily go

> away even if the head rounds out. Oh, she did say that given some

> more time she thought the back of the head would round out. I

just

> wish I had the confidence of the Drs. that we've spoken to and it

> would be great if it does, but I just don't want to have to rely on

> this happening and have no other options. I'm beginning to feel

> hopeless now... When I asked her to characterize her head, she

said

> she thought it was mild. This is a good thing, but I still am not

> happy with her current head shape, as it is obviously flat. Don't

> know where to go from here.

> >

> > As always, I appreciate your feedback.

> >

> > Thanks!

> >

> > Best,

> >

> >

> > (Sydney, six months, flattening and asymmetry)

> >

> >

> > ---------------------------------

> >

> > Use Photomail to share photos without annoying attachments.

> >

>

[Guest guest]

I don't know if you had a chance to look in the database section

here. There is a list of referring dr's in different areas, and

there is one in there for Nashville. If you are dead set against

getting a CT scan, though, I don't know how much help he will be

since it does say a CT is required first. Perhaps if he is not the

dr you already saw, and you called and talked ot him, maybe his

opinion in that has changed or he might be willing to be lenient

given your strong opinions. Just and idea.

Becky

, repo grad

Pittsburgh, PA

> >

> > Hello everyone,

> >

> > Well, after waiting another month and hoping to get some

> resolution or relief on Sydney's head we saw the plastic surgeon

today

> and I feel even worse! I was hoping that she'd recommend a

> band/helmut without having to do a CT scan, but she said that she

> would definitely have to have one to rule out craniosynostinosis.

> Ugh. We were going to her for our third opinion (we've seen the

neuro

> and he thought she did NOT have cranio and discounted her plagio

and

> the Ped is determined that it will round out on its own). The Dr.

> today believes that Syds plagio is positional, but will not treat

her

> without an official diagnosis. I understand that she is only being

> prudent in not wanting to mold her without being assured it's not

> cranio, but she also told me that she is not pro band. She would

not

> do any measurements, but took photos and said that we could come

back

> in two months to see if it's gotten better or worse. She said she

> might feel more confident making a decision at that point

> > without the CT scan, given some additional growth. I really

didn't

> want to wait and lose more time on the flattening and asymmetry,

but

> don't feel we have any other options now because we are not

> comfortable with doing the CT scan. I guess I just have to accept

now

> that we are in fact limiting our options by thisdecision, but I am

> sooooooo stressed out.

> >

> > While I know that several of your children have had CT scans

and I

> respect everyone's personal choice, my husband and I are very

opposed

> to this idea due to the radiation factor. We thought that perhaps

the

> doctor could get a visual and rule out cranio with an MRI or plain

old

> x-ray. She told us today that wasn't the case. I thought MRIs

could

> also show bone, as I had one done on my ankle when they thought it

was

> broken, but she says no. I could have sworn that I'd seen postings

> where children had MRIs and x-rays rather than CT scans. I believe

> that the CT scan shows greater detail, but thought that they could

at

> least rule out cranio using one of the other methods. Am I

barking up

> the wrong tree here?

> >

> > In addition to the flattening, I'm worried about two very flat

> spots on the top of either side of her head. I asked the Dr. about

> these and she didn't seem to think that these would necessarily go

> away even if the head rounds out. Oh, she did say that given some

> more time she thought the back of the head would round out. I

just

> wish I had the confidence of the Drs. that we've spoken to and it

> would be great if it does, but I just don't want to have to rely on

> this happening and have no other options. I'm beginning to feel

> hopeless now... When I asked her to characterize her head, she

said

> she thought it was mild. This is a good thing, but I still am not

> happy with her current head shape, as it is obviously flat. Don't

> know where to go from here.

> >

> > As always, I appreciate your feedback.

> >

> > Thanks!

> >

> > Best,

> >

> >

> > (Sydney, six months, flattening and asymmetry)

> >

> >

> > ---------------------------------

> >

> > Use Photomail to share photos without annoying attachments.

> >

>

[Guest guest]

I don't know if you had a chance to look in the database section

here. There is a list of referring dr's in different areas, and

there is one in there for Nashville. If you are dead set against

getting a CT scan, though, I don't know how much help he will be

since it does say a CT is required first. Perhaps if he is not the

dr you already saw, and you called and talked ot him, maybe his

opinion in that has changed or he might be willing to be lenient

given your strong opinions. Just and idea.

Becky

, repo grad

Pittsburgh, PA

> >

> > Hello everyone,

> >

> > Well, after waiting another month and hoping to get some

> resolution or relief on Sydney's head we saw the plastic surgeon

today

> and I feel even worse! I was hoping that she'd recommend a

> band/helmut without having to do a CT scan, but she said that she

> would definitely have to have one to rule out craniosynostinosis.

> Ugh. We were going to her for our third opinion (we've seen the

neuro

> and he thought she did NOT have cranio and discounted her plagio

and

> the Ped is determined that it will round out on its own). The Dr.

> today believes that Syds plagio is positional, but will not treat

her

> without an official diagnosis. I understand that she is only being

> prudent in not wanting to mold her without being assured it's not

> cranio, but she also told me that she is not pro band. She would

not

> do any measurements, but took photos and said that we could come

back

> in two months to see if it's gotten better or worse. She said she

> might feel more confident making a decision at that point

> > without the CT scan, given some additional growth. I really

didn't

> want to wait and lose more time on the flattening and asymmetry,

but

> don't feel we have any other options now because we are not

> comfortable with doing the CT scan. I guess I just have to accept

now

> that we are in fact limiting our options by thisdecision, but I am

> sooooooo stressed out.

> >

> > While I know that several of your children have had CT scans

and I

> respect everyone's personal choice, my husband and I are very

opposed

> to this idea due to the radiation factor. We thought that perhaps

the

> doctor could get a visual and rule out cranio with an MRI or plain

old

> x-ray. She told us today that wasn't the case. I thought MRIs

could

> also show bone, as I had one done on my ankle when they thought it

was

> broken, but she says no. I could have sworn that I'd seen postings

> where children had MRIs and x-rays rather than CT scans. I believe

> that the CT scan shows greater detail, but thought that they could

at

> least rule out cranio using one of the other methods. Am I

barking up

> the wrong tree here?

> >

> > In addition to the flattening, I'm worried about two very flat

> spots on the top of either side of her head. I asked the Dr. about

> these and she didn't seem to think that these would necessarily go

> away even if the head rounds out. Oh, she did say that given some

> more time she thought the back of the head would round out. I

just

> wish I had the confidence of the Drs. that we've spoken to and it

> would be great if it does, but I just don't want to have to rely on

> this happening and have no other options. I'm beginning to feel

> hopeless now... When I asked her to characterize her head, she

said

> she thought it was mild. This is a good thing, but I still am not

> happy with her current head shape, as it is obviously flat. Don't

> know where to go from here.

> >

> > As always, I appreciate your feedback.

> >

> > Thanks!

> >

> > Best,

> >

> >

> > (Sydney, six months, flattening and asymmetry)

> >

> >

> > ---------------------------------

> >

> > Use Photomail to share photos without annoying attachments.

> >

>

[Guest guest]

Hi ,

I haven't read the other responses yet so I may be repeating. I'm

so upset that drs today still say it'll round out when they have no

evidence that it will. the AAP even recommends banding at 6 months

of age if repo has not worked, recognizing that the younger the

child is when banded the greater the correction. Repo on a 6 month

old is difficult and not as effective because 1) they are very

willful, 2) they can usually reposition themselves the wrong way

rather easily, and 3) they're sitting up which is good because no

further flattening during this time but bad because you can't use

counter pressure.

Neither of my daughters had CT scans, xrays, mri's or anything. We

have a research paper that shows the difference between plagio and

cranio by visual only - it's in the files section. Of course with

medical malpractice and such a dr may be reluctant to say positional

only. Our family dr wrote the RX in both cases. With my youngest

insurance wanted us to get a 2nd opinion from a " specialst " - I

convinced them otherwise

na, DOC Grad Feb 04, Tort Resolved

Kiersten, 9 months, DOC 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its

own). The Dr. today believes that Syds plagio is positional, but

will not treat her without an official diagnosis. I understand that

she is only being prudent in not wanting to mold her without being

assured it's not cranio, but she also told me that she is not pro

band. She would not do any measurements, but took photos and said

that we could come back in two months to see if it's gotten better

or worse. She said she might feel more confident making a decision

at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this

decision, but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an

MRI or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle

when they thought it was broken, but she says no. I could have

sworn that I'd seen postings where children had MRIs and x-rays

rather than CT scans. I believe that the CT scan shows greater

detail, but thought that they could at least rule out cranio using

one of the other methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

Hi ,

I haven't read the other responses yet so I may be repeating. I'm

so upset that drs today still say it'll round out when they have no

evidence that it will. the AAP even recommends banding at 6 months

of age if repo has not worked, recognizing that the younger the

child is when banded the greater the correction. Repo on a 6 month

old is difficult and not as effective because 1) they are very

willful, 2) they can usually reposition themselves the wrong way

rather easily, and 3) they're sitting up which is good because no

further flattening during this time but bad because you can't use

counter pressure.

Neither of my daughters had CT scans, xrays, mri's or anything. We

have a research paper that shows the difference between plagio and

cranio by visual only - it's in the files section. Of course with

medical malpractice and such a dr may be reluctant to say positional

only. Our family dr wrote the RX in both cases. With my youngest

insurance wanted us to get a 2nd opinion from a " specialst " - I

convinced them otherwise

na, DOC Grad Feb 04, Tort Resolved

Kiersten, 9 months, DOC 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its

own). The Dr. today believes that Syds plagio is positional, but

will not treat her without an official diagnosis. I understand that

she is only being prudent in not wanting to mold her without being

assured it's not cranio, but she also told me that she is not pro

band. She would not do any measurements, but took photos and said

that we could come back in two months to see if it's gotten better

or worse. She said she might feel more confident making a decision

at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this

decision, but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an

MRI or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle

when they thought it was broken, but she says no. I could have

sworn that I'd seen postings where children had MRIs and x-rays

rather than CT scans. I believe that the CT scan shows greater

detail, but thought that they could at least rule out cranio using

one of the other methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

,

Some doctors want to be sure there is no chance of cranio before

allowing a band. The reason they are saying a CT scan is because with

an x-ray you can sometimes end up having to have a CT anyway if there

are any questions. Now if you are concerned about the radiation then

go with the CT scan so it's a one time deal. The CT scan will show

them any " sticky sutures " as well which an x-ray cannot most times. I

know it's crazy but some doctors are very strict about this. Will

this doctor write you a script for the band if you have the CT?

You may want to look in the files for another " band friendly " doctor

to see. I am so sorry this has been such an ordeal for you.

CAROLG

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its own).

The Dr. today believes that Syds plagio is positional, but will not

treat her without an official diagnosis. I understand that she is

only being prudent in not wanting to mold her without being assured

it's not cranio, but she also told me that she is not pro band. She

would not do any measurements, but took photos and said that we could

come back in two months to see if it's gotten better or worse. She

said she might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this decision,

but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an MRI

or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle when

they thought it was broken, but she says no. I could have sworn that

I'd seen postings where children had MRIs and x-rays rather than CT

scans. I believe that the CT scan shows greater detail, but thought

that they could at least rule out cranio using one of the other

methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

,

Some doctors want to be sure there is no chance of cranio before

allowing a band. The reason they are saying a CT scan is because with

an x-ray you can sometimes end up having to have a CT anyway if there

are any questions. Now if you are concerned about the radiation then

go with the CT scan so it's a one time deal. The CT scan will show

them any " sticky sutures " as well which an x-ray cannot most times. I

know it's crazy but some doctors are very strict about this. Will

this doctor write you a script for the band if you have the CT?

You may want to look in the files for another " band friendly " doctor

to see. I am so sorry this has been such an ordeal for you.

CAROLG

>

> Hello everyone,

>

> Well, after waiting another month and hoping to get some

resolution or relief on Sydney's head we saw the plastic surgeon

today and I feel even worse! I was hoping that she'd recommend a

band/helmut without having to do a CT scan, but she said that she

would definitely have to have one to rule out craniosynostinosis.

Ugh. We were going to her for our third opinion (we've seen the

neuro and he thought she did NOT have cranio and discounted her

plagio and the Ped is determined that it will round out on its own).

The Dr. today believes that Syds plagio is positional, but will not

treat her without an official diagnosis. I understand that she is

only being prudent in not wanting to mold her without being assured

it's not cranio, but she also told me that she is not pro band. She

would not do any measurements, but took photos and said that we could

come back in two months to see if it's gotten better or worse. She

said she might feel more confident making a decision at that point

> without the CT scan, given some additional growth. I really

didn't want to wait and lose more time on the flattening and

asymmetry, but don't feel we have any other options now because we

are not comfortable with doing the CT scan. I guess I just have to

accept now that we are in fact limiting our options by this decision,

but I am sooooooo stressed out.

>

> While I know that several of your children have had CT scans and

I respect everyone's personal choice, my husband and I are very

opposed to this idea due to the radiation factor. We thought that

perhaps the doctor could get a visual and rule out cranio with an MRI

or plain old x-ray. She told us today that wasn't the case. I

thought MRIs could also show bone, as I had one done on my ankle when

they thought it was broken, but she says no. I could have sworn that

I'd seen postings where children had MRIs and x-rays rather than CT

scans. I believe that the CT scan shows greater detail, but thought

that they could at least rule out cranio using one of the other

methods. Am I barking up the wrong tree here?

>

> In addition to the flattening, I'm worried about two very flat

spots on the top of either side of her head. I asked the Dr. about

these and she didn't seem to think that these would necessarily go

away even if the head rounds out. Oh, she did say that given some

more time she thought the back of the head would round out. I just

wish I had the confidence of the Drs. that we've spoken to and it

would be great if it does, but I just don't want to have to rely on

this happening and have no other options. I'm beginning to feel

hopeless now... When I asked her to characterize her head, she said

she thought it was mild. This is a good thing, but I still am not

happy with her current head shape, as it is obviously flat. Don't

know where to go from here.

>

> As always, I appreciate your feedback.

>

> Thanks!

>

> Best,

>

>

> (Sydney, six months, flattening and asymmetry)

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>