Re: New to board-need advice!!!

[Guest guest]

Cathleen,

3 weeks isn't going to be too late for a band.

DS was banded from 5-8 mo while DD was banded from 9-12 mo. I will

tell you there is a huge difference in the progress for them. She

didn't start getting flat enough to warrant a band until she was about

7 mo old.

I would trust the clinician to have a good grasp on the severity. Of

course it is a matter of opinion, but the clinician would be trained

in this repect. If you want another opinion perhaps check with a

pediatric plastic surgeon, but you might have a long wait to get in!

The ped told us she though DS fell into the mild range, but he had

18mm of asymmetry. I think he had 8mm of asymmetry in his face too.

Not very mild!

Good luck with your decision. You can also come here for support!

Mom to Dane 4 yo and Cece 12 mo (DOC Grads)

[Guest guest]

Cathleen,

3 weeks isn't going to be too late for a band.

DS was banded from 5-8 mo while DD was banded from 9-12 mo. I will

tell you there is a huge difference in the progress for them. She

didn't start getting flat enough to warrant a band until she was about

7 mo old.

I would trust the clinician to have a good grasp on the severity. Of

course it is a matter of opinion, but the clinician would be trained

in this repect. If you want another opinion perhaps check with a

pediatric plastic surgeon, but you might have a long wait to get in!

The ped told us she though DS fell into the mild range, but he had

18mm of asymmetry. I think he had 8mm of asymmetry in his face too.

Not very mild!

Good luck with your decision. You can also come here for support!

Mom to Dane 4 yo and Cece 12 mo (DOC Grads)

[Guest guest]

Cathleen-

My little guy was diagnosed at 5.5 mos, but after fighting with the

insurance co for two months before they FINALLY approved it (hope

you don't have to deal with that!), and now he is 8 mos yesterday

and not even in the band yet. He gets it next week and I am very

confident that we will see improvement at this age. Its once they

get closer to 24 mos that it takes a lot longer and is less

successful. Also remember, CT handles ONLY these types of cases, so

they are probably more trained than the ped and pt....

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but

we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was

6

> mos at the time. so, after a few weeks, my husband and I decided

to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>

[Guest guest]

Cathleen-

My little guy was diagnosed at 5.5 mos, but after fighting with the

insurance co for two months before they FINALLY approved it (hope

you don't have to deal with that!), and now he is 8 mos yesterday

and not even in the band yet. He gets it next week and I am very

confident that we will see improvement at this age. Its once they

get closer to 24 mos that it takes a lot longer and is less

successful. Also remember, CT handles ONLY these types of cases, so

they are probably more trained than the ped and pt....

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but

we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was

6

> mos at the time. so, after a few weeks, my husband and I decided

to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>

[Guest guest]

Hi Cathleen,

Welcome to the group. First, your son is not too old. CT is very

good at what they do. They see lots of plagio kids. Some neuros and

peds and PTs only see a few plagio kids a month or even a year. So

their idea of severe is just astronomically severe. I would trust

CT. I have with both of my girls. They both had tort (mild). Well

with the youngest we got her into PT at 5 months. She has been in it

for 2 months, twice a week. Her ears have corrected 1mm (from 8 to

7), which knowing how hard ears are to correct I am totally psyched

about. The flatness in the back (10mm) has not corrected at all, of

course it hasn't gotten worse either. We have tried every repo trick

known. Since na had tort and plagio we knew what to look for

and what to do to prevent. Well sometimes no matter what you do they

get a flat head - Kiersten is proof. I personally didn't think she

was that bad, but the measurements tell a different story. She will

get her DOC band on the 10th. The thing is that no one can tell you

if your son will be the one that rounds on his own. By the time you

know the answer it will be too late if he didn't round out. Think of

it as braces for the head. If he has crooked teeth at 12 will you

get him braces? They cost about the same - yikes. However, I think

you will find that the bands take less time, are easier to care for

and don't hurt (brace adjustments can be painful).

In the files section there is a whole folder on insurance. There are

some very helpful files.

na, 2 1/2, DOC Grad, Feb 04

Kiersten, 7 months, DOC band 1/10/06, tort

www.thefilyaws.com

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was 6

> mos at the time. so, after a few weeks, my husband and I decided to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>

[Guest guest]

Hi Cathleen,

Welcome to the group. First, your son is not too old. CT is very

good at what they do. They see lots of plagio kids. Some neuros and

peds and PTs only see a few plagio kids a month or even a year. So

their idea of severe is just astronomically severe. I would trust

CT. I have with both of my girls. They both had tort (mild). Well

with the youngest we got her into PT at 5 months. She has been in it

for 2 months, twice a week. Her ears have corrected 1mm (from 8 to

7), which knowing how hard ears are to correct I am totally psyched

about. The flatness in the back (10mm) has not corrected at all, of

course it hasn't gotten worse either. We have tried every repo trick

known. Since na had tort and plagio we knew what to look for

and what to do to prevent. Well sometimes no matter what you do they

get a flat head - Kiersten is proof. I personally didn't think she

was that bad, but the measurements tell a different story. She will

get her DOC band on the 10th. The thing is that no one can tell you

if your son will be the one that rounds on his own. By the time you

know the answer it will be too late if he didn't round out. Think of

it as braces for the head. If he has crooked teeth at 12 will you

get him braces? They cost about the same - yikes. However, I think

you will find that the bands take less time, are easier to care for

and don't hurt (brace adjustments can be painful).

In the files section there is a whole folder on insurance. There are

some very helpful files.

na, 2 1/2, DOC Grad, Feb 04

Kiersten, 7 months, DOC band 1/10/06, tort

www.thefilyaws.com

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was 6

> mos at the time. so, after a few weeks, my husband and I decided to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>

[Guest guest]

Hi Cathleen -

Sorry that you are going through similar things that we went

through - all though I do realize that there are far worse things

than dealing with Plagio. Just wanted to say that my son

experienced similar things and he's also a premature baby (9 weeks

early)- he is relatively mild of a case - and repo and PT has helped

the flatness and we don't notice the tort anymore. He was

borderline with measurements from CT. Our Ped. said that if it was

her son, she would not do banding but it's because she's not the

worrying type - but she was good and referred us to CT and wrote the

prescription. So we really debated the need for it or not. We

decided to go ahead (jury still out on insurance coverage)- but I'm

still not sure about it as I don't know if he really would have had

any long term health problems with the way his head is currently.

Good luck with your decision. Hopefully insurance will come through

for you... will this make your decision easier?

> >

> > Hello!

> > I just went on this board today, and have been reading and

> > reading...I am hoping I can get some advice...here is my son's

> story:

> > The Ped noticed at about 2 months that he had flatness, so we

kept

> > repositioning him. She then never really mentioned it again, but

we

> > noticed at about 6 months that it was not getting any better.

Went

> > to Ped neurologist, which told us that he had torticollis

(mild).

> We

> > never expected that, and was annoyed that the Ped never

mentioned

> > it. Looking back at pics early on, I realize that he tilted his

> head

> > to the right. anyway, neurologist told us that he has

flattening,

> > but it would correct itself once we get the torticollis fixed.

He

> > said to see him in 3 months. So, we started w/ pt once a week,

and

> > she also told us she did not think he needed a helmet, very

mild.

> We

> > kept thinking to ourselves that what if it did not correct

itself

> > after 3 mos, and we knew time/age had a lot to do with it. he

was 6

> > mos at the time. so, after a few weeks, my husband and I decided

to

> > go to cranial tech in nj to get the other side of things. we

> > noticed that his one eye was a little smaller than the other,

his

> > back of his head buldged on one side and flatter on other. So,

CT

> > said that he was a " somewhat severe " case. I was shocked, based

on

> > the other professionals. She noticed everything we did, and

more.

> > The ears a little unaligned, and forehead. My husband wants to

go

> > ahead with it, and i am on the fence, I jsut can't help but

think

> > that the Ped, pt, and neurolgist all did not think he needed it.

I

> > expected Ct to tell us he had a mild case. So, now I am in the

> > process of seeing if the insurance will cover it, Ct is out of

> > network, so I would have to pay out of pocket, unless there is

not

> > anyone else in the area. Does anyone know of anyone else in

> northern

> > nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> > premature, so Ct adjusted his age. They told me insurance cert

> could

> > take 3 weeks. Is it going to be too late for doc band? Any

> > help/advice would be greatly appreciated!

> > Cathleen

> >

>

[Guest guest]

Hi Cathleen -

Sorry that you are going through similar things that we went

through - all though I do realize that there are far worse things

than dealing with Plagio. Just wanted to say that my son

experienced similar things and he's also a premature baby (9 weeks

early)- he is relatively mild of a case - and repo and PT has helped

the flatness and we don't notice the tort anymore. He was

borderline with measurements from CT. Our Ped. said that if it was

her son, she would not do banding but it's because she's not the

worrying type - but she was good and referred us to CT and wrote the

prescription. So we really debated the need for it or not. We

decided to go ahead (jury still out on insurance coverage)- but I'm

still not sure about it as I don't know if he really would have had

any long term health problems with the way his head is currently.

Good luck with your decision. Hopefully insurance will come through

for you... will this make your decision easier?

> >

> > Hello!

> > I just went on this board today, and have been reading and

> > reading...I am hoping I can get some advice...here is my son's

> story:

> > The Ped noticed at about 2 months that he had flatness, so we

kept

> > repositioning him. She then never really mentioned it again, but

we

> > noticed at about 6 months that it was not getting any better.

Went

> > to Ped neurologist, which told us that he had torticollis

(mild).

> We

> > never expected that, and was annoyed that the Ped never

mentioned

> > it. Looking back at pics early on, I realize that he tilted his

> head

> > to the right. anyway, neurologist told us that he has

flattening,

> > but it would correct itself once we get the torticollis fixed.

He

> > said to see him in 3 months. So, we started w/ pt once a week,

and

> > she also told us she did not think he needed a helmet, very

mild.

> We

> > kept thinking to ourselves that what if it did not correct

itself

> > after 3 mos, and we knew time/age had a lot to do with it. he

was 6

> > mos at the time. so, after a few weeks, my husband and I decided

to

> > go to cranial tech in nj to get the other side of things. we

> > noticed that his one eye was a little smaller than the other,

his

> > back of his head buldged on one side and flatter on other. So,

CT

> > said that he was a " somewhat severe " case. I was shocked, based

on

> > the other professionals. She noticed everything we did, and

more.

> > The ears a little unaligned, and forehead. My husband wants to

go

> > ahead with it, and i am on the fence, I jsut can't help but

think

> > that the Ped, pt, and neurolgist all did not think he needed it.

I

> > expected Ct to tell us he had a mild case. So, now I am in the

> > process of seeing if the insurance will cover it, Ct is out of

> > network, so I would have to pay out of pocket, unless there is

not

> > anyone else in the area. Does anyone know of anyone else in

> northern

> > nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> > premature, so Ct adjusted his age. They told me insurance cert

> could

> > take 3 weeks. Is it going to be too late for doc band? Any

> > help/advice would be greatly appreciated!

> > Cathleen

> >

>

[Guest guest]

Welcome Cathleen,

I see that others have already given you great advice so I won't

repeat it, but wanted to say Welcome. This is a great board and you

will find it a great asset. My opinion is do the band, you will be

amazed at the results.

CAROLG

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was 6

> mos at the time. so, after a few weeks, my husband and I decided to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>

[Guest guest]

Welcome Cathleen,

I see that others have already given you great advice so I won't

repeat it, but wanted to say Welcome. This is a great board and you

will find it a great asset. My opinion is do the band, you will be

amazed at the results.

CAROLG

>

> Hello!

> I just went on this board today, and have been reading and

> reading...I am hoping I can get some advice...here is my son's

story:

> The Ped noticed at about 2 months that he had flatness, so we kept

> repositioning him. She then never really mentioned it again, but we

> noticed at about 6 months that it was not getting any better. Went

> to Ped neurologist, which told us that he had torticollis(mild).

We

> never expected that, and was annoyed that the Ped never mentioned

> it. Looking back at pics early on, I realize that he tilted his

head

> to the right. anyway, neurologist told us that he has flattening,

> but it would correct itself once we get the torticollis fixed. He

> said to see him in 3 months. So, we started w/ pt once a week, and

> she also told us she did not think he needed a helmet, very mild.

We

> kept thinking to ourselves that what if it did not correct itself

> after 3 mos, and we knew time/age had a lot to do with it. he was 6

> mos at the time. so, after a few weeks, my husband and I decided to

> go to cranial tech in nj to get the other side of things. we

> noticed that his one eye was a little smaller than the other, his

> back of his head buldged on one side and flatter on other. So, CT

> said that he was a " somewhat severe " case. I was shocked, based on

> the other professionals. She noticed everything we did, and more.

> The ears a little unaligned, and forehead. My husband wants to go

> ahead with it, and i am on the fence, I jsut can't help but think

> that the Ped, pt, and neurolgist all did not think he needed it. I

> expected Ct to tell us he had a mild case. So, now I am in the

> process of seeing if the insurance will cover it, Ct is out of

> network, so I would have to pay out of pocket, unless there is not

> anyone else in the area. Does anyone know of anyone else in

northern

> nj? I am also concerned about his age. he is 8 mos, but 5 weeks

> premature, so Ct adjusted his age. They told me insurance cert

could

> take 3 weeks. Is it going to be too late for doc band? Any

> help/advice would be greatly appreciated!

> Cathleen

>