New member

[Guest guest]

Welcome to the group. My daughter wasn't officially diagnose with tort but did have a tilt. She was banded at 9 months and had great success.

There are many memebers in this group whose baby's have tort and were banded. They had great results as well. I am sure they will chime in.

You are a great mom. I would definitely get a second opinion. I would definitely go to CT and get the free consultation. Unfortunately not all doctors are educated on plagio.

Please keep us updated.

Angie and Jenna(STARband grad 1/21/03)

New Member

Hello all!I am new to this group and have found all of the information here very informative. My son is 13 months old and has torticollis and plagio because of this. We were referred to a orthopeadic doctor when my son was about 10 weeks old. He sent us to physical therapy for the tort and it has greatly improved but still is there. The plagio is on the left side of his head and to us it is very noticeable. At every appt. my ortho kept telling us that the flatness would get better over time but we have seen little or no improvement. At the last visit, I forced the ortho to send us to a ped neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we had high hopes. Well, that did not last long. The neuro spent about 5 minutes with us and basically said he would not band a child with tort because it will make it more difficult for him to turn his head and would make it worse. Has anyone had this experience or has anyone banded a child with tort? Also, he said the flatness was mild and that within 3 months we should start seeing improvement but it will never be normal. I am currently waiting to schedule an appt at the Children's Hospital in Washington, DC to get a 2nd opinion. I want to feel like I did everything I could for my son.Anyone have any advice or anyone live in land that could suggest a good doctor? There is a CT in ndale, VA that is not far from my home and I am thinking of going to them for a free consultation but I thought a doctor would know best?!Thanks for listening,Rochelle in Frederick, MDFor more plagio info

[Guest guest]

Rochelle,

Welcome to the group. At your son's age, time is going to be a big

factor. I would hurry to CT to get a consult and see what they

say. CT will band a baby up until around 18 mos (it varies), but

the younger the baby, the better the chance of correction.

Unfortunately, this isn't an overnight process, you may have

insurance issues to contend with that could hold you up. I guess

before I get too ahead of myself, why not go to CT and get the

consult and see what they say. If your son's plagio is mild, then

you can breathe a sigh of relief. If it's not, at least you can

still do something about it. The consult is free, and I think many

members here would attest that they do give an unbiased opinion and

WILL turn you away if they don't think your son is a good candidate

for a band. Oh, and about the tort, my and many of our

banded babies have/had tort - we just had to take the band off for a

few minutes several times a day to do 's physical therapy

exercises at home...

Kerri from NY

Mom to (8 mos, DOCgrad)

--- In Plagiocephaly , " rtk0012001 " <rtkojac@m...>

wrote:

> Hello all!

>

> I am new to this group and have found all of the information here

> very informative. My son is 13 months old and has torticollis and

> plagio because of this. We were referred to a orthopeadic doctor

> when my son was about 10 weeks old. He sent us to physical

therapy

> for the tort and it has greatly improved but still is there. The

> plagio is on the left side of his head and to us it is very

> noticeable. At every appt. my ortho kept telling us that the

> flatness would get better over time but we have seen little or no

> improvement.

>

> At the last visit, I forced the ortho to send us to a ped

> neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we

> had high hopes. Well, that did not last long. The neuro spent

about

> 5 minutes with us and basically said he would not band a child

with

> tort because it will make it more difficult for him to turn his

head

> and would make it worse. Has anyone had this experience or has

> anyone banded a child with tort? Also, he said the flatness was

mild

> and that within 3 months we should start seeing improvement but it

> will never be normal.

>

> I am currently waiting to schedule an appt at the Children's

Hospital

> in Washington, DC to get a 2nd opinion. I want to feel like I did

> everything I could for my son.

>

> Anyone have any advice or anyone live in land that could

suggest

> a good doctor? There is a CT in ndale, VA that is not far

from

> my home and I am thinking of going to them for a free consultation

> but I thought a doctor would know best?!

>

> Thanks for listening,

> Rochelle in Frederick, MD

[Guest guest]

Hey there Rochelle,

There are a lot of parents on this board that have plagio and tort both. Most have had their children banded with much success. With your son being a little older, I would try to get a free evaluation at Cranial Tech ASAP. They are a great company and will tell you if your son would benefit from a band or not. We are using the CT in Atlanta and could not be happier with them.

I am sure you will hear from parents that have children with plagio and tort both.

Good luck and let us know what you decide.

Lou

New Member

Hello all!I am new to this group and have found all of the information here very informative. My son is 13 months old and has torticollis and plagio because of this. We were referred to a orthopeadic doctor when my son was about 10 weeks old. He sent us to physical therapy for the tort and it has greatly improved but still is there. The plagio is on the left side of his head and to us it is very noticeable. At every appt. my ortho kept telling us that the flatness would get better over time but we have seen little or no improvement. At the last visit, I forced the ortho to send us to a ped neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we had high hopes. Well, that did not last long. The neuro spent about 5 minutes with us and basically said he would not band a child with tort because it will make it more difficult for him to turn his head and would make it worse. Has anyone had this experience or has anyone banded a child with tort? Also, he said the flatness was mild and that within 3 months we should start seeing improvement but it will never be normal. I am currently waiting to schedule an appt at the Children's Hospital in Washington, DC to get a 2nd opinion. I want to feel like I did everything I could for my son.Anyone have any advice or anyone live in land that could suggest a good doctor? There is a CT in ndale, VA that is not far from my home and I am thinking of going to them for a free consultation but I thought a doctor would know best?!Thanks for listening,Rochelle in Frederick, MDFor more plagio info

[Guest guest]

Hi Rochelle and welcome to the group!!! Hurry and get him to CT for

an eval or a specialist to write a script. CT could probably get you

the name and number of a dr. in the area that is plagio and band

friendly. Time is of the essence when banding. A very small

window. Your doing a wonderful job!

Dustie, mom to , DOC Grad'03

--- In Plagiocephaly , " rtk0012001 " <rtkojac@m...>

wrote:

> Hello all!

>

> I am new to this group and have found all of the information here

> very informative. My son is 13 months old and has torticollis and

> plagio because of this. We were referred to a orthopeadic doctor

> when my son was about 10 weeks old. He sent us to physical therapy

> for the tort and it has greatly improved but still is there. The

> plagio is on the left side of his head and to us it is very

> noticeable. At every appt. my ortho kept telling us that the

> flatness would get better over time but we have seen little or no

> improvement.

>

> At the last visit, I forced the ortho to send us to a ped

> neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we

> had high hopes. Well, that did not last long. The neuro spent

about

> 5 minutes with us and basically said he would not band a child with

> tort because it will make it more difficult for him to turn his

head

> and would make it worse. Has anyone had this experience or has

> anyone banded a child with tort? Also, he said the flatness was

mild

> and that within 3 months we should start seeing improvement but it

> will never be normal.

>

> I am currently waiting to schedule an appt at the Children's

Hospital

> in Washington, DC to get a 2nd opinion. I want to feel like I did

> everything I could for my son.

>

> Anyone have any advice or anyone live in land that could

suggest

> a good doctor? There is a CT in ndale, VA that is not far from

> my home and I am thinking of going to them for a free consultation

> but I thought a doctor would know best?!

>

> Thanks for listening,

> Rochelle in Frederick, MD

[Guest guest]

Hi Rochelle,

Welcome to the group! 80+% cases of plagio are caused by torticollis.

So your neuro is 100% incorrect!!!!! My baby had tort and was

DOCbanded.

When it comes to plagio, no one is more educated than Cranial Tech. I

don't think there is any doctor that would know more. Time really is

of the essence here, I'd get a script from your pediatrician for a

DOCband and make an appt ASAP.

--- In Plagiocephaly , " rtk0012001 " <rtkojac@m...>

wrote:

> Hello all!

>

> I am new to this group and have found all of the information here

> very informative. My son is 13 months old and has torticollis and

> plagio because of this. We were referred to a orthopeadic doctor

> when my son was about 10 weeks old. He sent us to physical therapy

> for the tort and it has greatly improved but still is there. The

> plagio is on the left side of his head and to us it is very

> noticeable. At every appt. my ortho kept telling us that the

> flatness would get better over time but we have seen little or no

> improvement.

>

> At the last visit, I forced the ortho to send us to a ped

> neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we

> had high hopes. Well, that did not last long. The neuro spent

about

> 5 minutes with us and basically said he would not band a child with

> tort because it will make it more difficult for him to turn his

head

> and would make it worse. Has anyone had this experience or has

> anyone banded a child with tort? Also, he said the flatness was

mild

> and that within 3 months we should start seeing improvement but it

> will never be normal.

>

> I am currently waiting to schedule an appt at the Children's

Hospital

> in Washington, DC to get a 2nd opinion. I want to feel like I did

> everything I could for my son.

>

> Anyone have any advice or anyone live in land that could

suggest

> a good doctor? There is a CT in ndale, VA that is not far from

> my home and I am thinking of going to them for a free consultation

> but I thought a doctor would know best?!

>

> Thanks for listening,

> Rochelle in Frederick, MD

[Guest guest]

My son Ian wore a DOC band. We live in Centreville VA and we went to

the CT office in ndale. is the therapist there and she is

wonderful. They do free consults. Maybe you should schedule one and

see what her take is on the severity of your sons plagio. She would

definately be able to tell you if a band would make a difference.

Then if she thinks it would help, would your regular pediatrician be

willing to write a prescription for a band????

Good luck!

Kate

Mom to Ian (DOC grad 5/03)

Northern Virginia

--- In Plagiocephaly , " rtk0012001 " <rtkojac@m...>

wrote:

> Hello all!

>

> I am new to this group and have found all of the information here

> very informative. My son is 13 months old and has torticollis and

> plagio because of this. We were referred to a orthopeadic doctor

> when my son was about 10 weeks old. He sent us to physical therapy

> for the tort and it has greatly improved but still is there. The

> plagio is on the left side of his head and to us it is very

> noticeable. At every appt. my ortho kept telling us that the

> flatness would get better over time but we have seen little or no

> improvement.

>

> At the last visit, I forced the ortho to send us to a ped

> neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we

> had high hopes. Well, that did not last long. The neuro spent

about

> 5 minutes with us and basically said he would not band a child with

> tort because it will make it more difficult for him to turn his

head

> and would make it worse. Has anyone had this experience or has

> anyone banded a child with tort? Also, he said the flatness was

mild

> and that within 3 months we should start seeing improvement but it

> will never be normal.

>

> I am currently waiting to schedule an appt at the Children's

Hospital

> in Washington, DC to get a 2nd opinion. I want to feel like I did

> everything I could for my son.

>

> Anyone have any advice or anyone live in land that could

suggest

> a good doctor? There is a CT in ndale, VA that is not far from

> my home and I am thinking of going to them for a free consultation

> but I thought a doctor would know best?!

>

> Thanks for listening,

> Rochelle in Frederick, MD

[Guest guest]

Hi Rochelle and welcome to the group.

My son had plagio and tort, he wore a DOC Band from Cranial Tech.

The band does not interfere with the tort, it actually helps it. I

would definetly get that free consult from CT, they will give you an

honest opinion on you son's condition and if he would benefit from

the band. The earlier you start the better, so you can do this while

waiting for the 2nd opinion appointment. Tort does take a while to

correct, so keep doing those exercises 4 - 6 times a day.

Good luck and keep us posted.

mom to Jake 13mo.(DocBand grad 4/03)

and Tyler 3yrs.

--- In Plagiocephaly , " rtk0012001 " <rtkojac@m...>

wrote:

> Hello all!

>

> I am new to this group and have found all of the information here

> very informative. My son is 13 months old and has torticollis and

> plagio because of this. We were referred to a orthopeadic doctor

> when my son was about 10 weeks old. He sent us to physical therapy

> for the tort and it has greatly improved but still is there. The

> plagio is on the left side of his head and to us it is very

> noticeable. At every appt. my ortho kept telling us that the

> flatness would get better over time but we have seen little or no

> improvement.

>

> At the last visit, I forced the ortho to send us to a ped

> neurosurgeon. He sent us to s Hopkins in Baltimore, MD and we

> had high hopes. Well, that did not last long. The neuro spent

about

> 5 minutes with us and basically said he would not band a child with

> tort because it will make it more difficult for him to turn his

head

> and would make it worse. Has anyone had this experience or has

> anyone banded a child with tort? Also, he said the flatness was

mild

> and that within 3 months we should start seeing improvement but it

> will never be normal.

>

> I am currently waiting to schedule an appt at the Children's

Hospital

> in Washington, DC to get a 2nd opinion. I want to feel like I did

> everything I could for my son.

>

> Anyone have any advice or anyone live in land that could

suggest

> a good doctor? There is a CT in ndale, VA that is not far from

> my home and I am thinking of going to them for a free consultation

> but I thought a doctor would know best?!

>

> Thanks for listening,

> Rochelle in Frederick, MD

[Guest guest]

In a message dated 8/15/2003 3:24:38 PM Eastern Daylight Time, snuffy292002@... writes:

Finally, at his 9 month checkup, I was very

serious, and I told him my son needed an intervention. How long does

it take before I'll see some improvement?

Welcome to the group! Did your ped refer you to any specialists once you made him take a serious look? You definetly want to explore your options now, the window of good correction time is closing in and you'll want to start setting up some appts. now. What area are you, perhaps we have some members that can share their references for an Ortho or clinic in your area. Did your ped offer to write a prescription for a band or helmet?

' mom

[Guest guest]

Hi,

Welcome to the group! Are you located near a cranial tech clinic?

They will give you a free evaluation. You don't need a script from a

specialist, you can get it from your pediatrician. I'm guess that is

why are being referred to a specialist. Since you've already had

x-rays done and there aren't any fused sutures you don't need to see

a ped neuro. Ask your ped for a script for a cranial orthotic.

You can find out if you are near a CT office by going here

http://www.cranialtech.com

You can find out about the STARband by going here:

http://www.orthomerica.com

The younger a baby is banded the better and faster the correction.

The window of opportunity to correct plagio isn't a big one, so I

wouldn't wait until the end of October. Keep us posted.

--- In Plagiocephaly , " laliya333 " <laliya333@y...>

wrote:

> Hello everyone, I've heard many good things about this group and

have

> many questions. My son was a little over 3 months old when I

noticed

> his head seemed just a bit flat on one side, but everyone insisted

> that it would round itself out and not to worry, after all my

daughter

> (who is now 8years old) had an odd shaped head when she was a

newborn

> but repositioning worked fine and she rounded out perfectly. But

with

> my son, it didn't seem to be working. I looked up a few things on

> google and came up with plagiocephaly. It showed me to look from

the

> topview of his head, and when I did that, I almost had a heart

attack.

> Not only was one side of his head a bit flat but more noticeable

was

> his ears were not aligned and one side of his forehead protruded. I

> took him to his ped and he advised " aggressive " repositioning, and

> that he would check him in a month. When my son was 5 months old,

he

> advised to continue with the repositioning which we did. At 6

months,

> the ped referred us to get x-rays done which showed he did not have

a

> suture problem. And now we are refered to a ped neuro but the

earliest

> appointment available isn't until October 24th (which we took)... I

> don't know what to do... does it always take that long to see a

neuro

> ped? Are these the steps to take before treatment is recommended?

This

> is all new to me, should I have followed my instincts and insisted

on

> him getting x-rays earlier? Did I do something wrong? And we have

> Carefirst and they say it is cosmetic and he will not be eligible

for

> coverage if he needs a helmet. I am sorry for writing a long

message,

> I just don't know what the steps are, if we are going in the right

> direction... I feel like some of my relatives blame me, that I did

> something wrong, but I did the same positioning if not more as I

did

> with my daughter... Please help... thank you so much, in advance...

[Guest guest]

Hello & welcome to our group!

First & foremost, you have done NOTHING wrong!! Plagio is a growing epidemic in our society today, you put your son to sleep on his back per the AAP's strong recommendation to prevent SIDS and followed everything your Dr has instructed you to do thus far.

It is pretty typical to have a long wait to see a ped. neuro., our wait was well over a month as well. As to be placed on their cancellation list, so if there are any canceled appts between your appt & now, they can call to get you in. But, if your son has already had Xrays that were negative for premature fusion, and you'd feel he'd benefit from a band or helmet, I'd ask your ped. for a rx for a helmet or band if he knows of any in your area. Where do you live? The younger you get your baby banded, the better & faster correction will be. Not all members in our group were referred to a ped. neuro for the rx for their baby's band or helmet.

Also, follow 's tips and check out Cranial Tech's & Orthomerica's websites for more plagio info..

Good luck, please keep us posted.

Debbie Abby's mom DOCGrad Michiganlaliya333 <laliya333@...> wrote:

Hello everyone, I've heard many good things about this group and have many questions. My son was a little over 3 months old when I noticed his head seemed just a bit flat on one side, but everyone insisted that it would round itself out and not to worry, after all my daughter (who is now 8years old) had an odd shaped head when she was a newborn but repositioning worked fine and she rounded out perfectly. But with my son, it didn't seem to be working. I looked up a few things on google and came up with plagiocephaly. It showed me to look from the topview of his head, and when I did that, I almost had a heart attack. Not only was one side of his head a bit flat but more noticeable was his ears were not aligned and one side of his forehead protruded. I took him to his ped and he advised "aggressive" repositioning, and that he would

check him in a month. When my son was 5 months old, he advised to continue with the repositioning which we did. At 6 months, the ped referred us to get x-rays done which showed he did not have a suture problem. And now we are refered to a ped neuro but the earliest appointment available isn't until October 24th (which we took)... I don't know what to do... does it always take that long to see a neuro ped? Are these the steps to take before treatment is recommended? This is all new to me, should I have followed my instincts and insisted on him getting x-rays earlier? Did I do something wrong? And we have Carefirst and they say it is cosmetic and he will not be eligible for coverage if he needs a helmet. I am sorry for writing a long message, I just don't know what the steps are, if we are going in the right direction... I feel like some of my relatives blame me, that I did something wrong, but I did the same positioning if not more

as I did with my daughter... Please help... thank you so much, in advance...For more plagio info

[Guest guest]

Aw, don't feel bad about it. With my first child, I just didn't

know. With my second, I did and he is banded too. Knowing what I know

now, my best advice to you is to really try and begin treatment (if

you go that route) and look into banding him. Personally, I wouldn't

wait until October. My son started treatment at 5 months and now at 6

months he is half way there. They are telling me 6 more weeks of

treatment. Check into Cranial Tech or StarBand

Caroline

[Guest guest]

Hello and welcome to the group.

The previous posts have giving you some very good advice. We've all

felt the guilt, but you can't prevent something you don't know can

happen. The sooner you band the better, so hopefully there's a

Cranial Tech or Starband maker near you. If you post the area you

live in maybe someone can give you another ped neurosurgeon to check

out. I waited 2 months for our appointment, but my son was only 4

months at the time.

As far as the insurance goes, many try to deny based on the Cosmetic

issue, but that can be fought. Plagio is not a cosmetic issue,

treatment for it is considered reconstructive. You can get more info

when you need it at the cappskids website, they have a very good

insurance help section.

www.cappskids.org

Good Luck and keep us posted.

in NJ

mom to Jake 13mo(DOC band grad 4/03)

and Tyler 3yrs.

--- In Plagiocephaly , " laliya333 " <laliya333@y...>

wrote:

> Hello everyone, I've heard many good things about this group and

have

> many questions. My son was a little over 3 months old when I

noticed

> his head seemed just a bit flat on one side, but everyone insisted

> that it would round itself out and not to worry, after all my

daughter

> (who is now 8years old) had an odd shaped head when she was a

newborn

> but repositioning worked fine and she rounded out perfectly. But

with

> my son, it didn't seem to be working. I looked up a few things on

> google and came up with plagiocephaly. It showed me to look from

the

> topview of his head, and when I did that, I almost had a heart

attack.

> Not only was one side of his head a bit flat but more noticeable

was

> his ears were not aligned and one side of his forehead protruded. I

> took him to his ped and he advised " aggressive " repositioning, and

> that he would check him in a month. When my son was 5 months old,

he

> advised to continue with the repositioning which we did. At 6

months,

> the ped referred us to get x-rays done which showed he did not have

a

> suture problem. And now we are refered to a ped neuro but the

earliest

> appointment available isn't until October 24th (which we took)... I

> don't know what to do... does it always take that long to see a

neuro

> ped? Are these the steps to take before treatment is recommended?

This

> is all new to me, should I have followed my instincts and insisted

on

> him getting x-rays earlier? Did I do something wrong? And we have

> Carefirst and they say it is cosmetic and he will not be eligible

for

> coverage if he needs a helmet. I am sorry for writing a long

message,

> I just don't know what the steps are, if we are going in the right

> direction... I feel like some of my relatives blame me, that I did

> something wrong, but I did the same positioning if not more as I

did

> with my daughter... Please help... thank you so much, in advance...

[Guest guest]

First, let me welcome you! I see you have had some great posts so far, so I won't go on and on. It took us a month to get a neuro appointment, but I agree with the other posts that you should look to see if there are any Cranial Technologies or Starband clinics in your area. Starting earlier is best, but you will still have good correction if you begin before one year old, so not to worry.

Second, please do not blame yourself for this. It really is up to the medical society to educate us parents on how to prevent this growing problem. You did nothing wrong!

Please let us know how things progress!

Rhonda

Mom to Collin - DOC Band Grad 2003http://www.collingillespie.com http://www.preciousbambino.com

From: "laliya333" <laliya333@y...> Date: Mon Aug 25, 2003 9:46 pmSubject: new member

ADVERTISEMENTHello everyone, I've heard many good things about this group and have many questions. My son was a little over 3 months old when I noticed his head seemed just a bit flat on one side, but everyone insisted that it would round itself out and not to worry, after all my daughter (who is now 8years old) had an odd shaped head when she was a newborn but repositioning worked fine and she rounded out perfectly. But with my son, it didn't seem to be working. I looked up a few things on google and came up with plagiocephaly. It showed me to look from the topview of his head, and when I did that, I almost had a heart attack. Not only was one side of his head a bit flat but more noticeable was his ears were not aligned and one side of his forehead protruded. I took him to his ped and he advised "aggressive" repositioning, and that he would check him in a month. When my son was 5 months old, he advised to continue with the repositioning which we did. At 6 months, the ped referred us to get x-rays done which showed he did not have a suture problem. And now we are refered to a ped neuro but the earliest appointment available isn't until October 24th (which we took)... I don't know what to do... does it always take that long to see a neuro ped? Are these the steps to take before treatment is recommended? This is all new to me, should I have followed my instincts and insisted on him getting x-rays earlier? Did I do something wrong? And we have Carefirst and they say it is cosmetic and he will not be eligible for coverage if he needs a helmet. I am sorry for writing a long message, I just don't know what the steps are, if we are going in the right direction... I feel like some of my relatives blame me, that I did something wrong, but I did the same positioning if not more as I did with my daughter... Please help... thank you so much, in advance...

[Guest guest]

Hi, Im fairly new too. My son, Drew, will be 6 months next week. He

received is DocBand today! Just thought Id let you know that we

skipped the neurosurgeon. I insisted that my ped give me the

prescription for the DocBand at Cranial Technologies. I then went and

had my sons head measured at the neuros partners only b/c my

insurance needed that to pay..well partly pay. You need to check to

see if their is a CT place where or near where you live or the other

for StarBand. I don't know much about that but read some of the posts

and it's been mentioned. So I started this process at the 4month

appt and we just received the band today... for us the insurance and

everything took 2 months. Id see what channels you could skip..

Hope it all goes well.

Lisha

Dallas, TX

Drew 8/27

Jay DB grad

> new member

>

>

> Hello everyone, I've heard many good things about this group and

have

> many questions. My son was a little over 3 months old when I

noticed

> his head seemed just a bit flat on one side, but everyone insisted

> that it would round itself out and not to worry, after all my

daughter

> (who is now 8years old) had an odd shaped head when she was a

newborn

> but repositioning worked fine and she rounded out perfectly. But

with

> my son, it didn't seem to be working. I looked up a few things on

> google and came up with plagiocephaly. It showed me to look from

the

> topview of his head, and when I did that, I almost had a heart

attack.

> Not only was one side of his head a bit flat but more noticeable

was

> his ears were not aligned and one side of his forehead protruded.

I

> took him to his ped and he advised " aggressive " repositioning, and

> that he would check him in a month. When my son was 5 months old,

he

> advised to continue with the repositioning which we did. At 6

months,

> the ped referred us to get x-rays done which showed he did not

have a

> suture problem. And now we are refered to a ped neuro but the

earliest

> appointment available isn't until October 24th (which we took)...

I

> don't know what to do... does it always take that long to see a

neuro

> ped? Are these the steps to take before treatment is recommended?

This

> is all new to me, should I have followed my instincts and

insisted on

> him getting x-rays earlier? Did I do something wrong? And we have

> Carefirst and they say it is cosmetic and he will not be eligible

for

> coverage if he needs a helmet. I am sorry for writing a long

message,

> I just don't know what the steps are, if we are going in the right

> direction... I feel like some of my relatives blame me, that I did

> something wrong, but I did the same positioning if not more as I

did

> with my daughter... Please help... thank you so much, in

advance...

>

>

>

[Guest guest]

Hi ,

Welcome to the group! You have definitely found a great source of information and support. I cannot help with repositioning, as Trentyn was too old for that to help when we started down this path.

We go to CT in Dallas. They are the only ones in the DFW area with a lot of experience in this area. We interviewed other available Orthotists and found them lacking in experience.

We also have been to Dr. Day's office to see Dr. Kolar who has done both sets of Trentyn's measurements for insurance. He is somewhat gruff, but they refer to CT and he believes in the power of helmets!

Anyway, just wanted to welcome you, we are in the Keller area. Good luck with your appt. next week, keep us posted!

Jen- TXTrentyn- 15 mo. DocBand 06/12/03

New Member

My son Judah is 5 months old and we have an appointment next week with a craniofacial surgeon to confirm if he has positional plagiocephaly.He was born 3 weeks early by forceps delivery. My son had a tendency to look toward the left constantly - in the crib, when we held him and in his carseat. We noticed at apprx. 2 months that his head was becoming flat on the back left, his left ear is pushed forward (and sticks out while the other does not) and his head has an oval shape. We could not really see this when looking straight at him, but rather from the top and from the back. After a bit of research, I found an explanation for craniosynostosis and plagiocephaly along with another issue I thought might be to blame - torticollis. My pediatrician couldn't find any muscle bunching which is indicative of torticollis, but still prescribed a regimen of daily neck stretches chin-to-shoulder for a couple minutes per day to stretch his muscles. We also had X-rays taken to eliminate the diagnosis of craniosynostosis and the pediatrician stated that he most likely has positional plagiocephaly. She told us to make sandbags to prop his head straight up at night so we purchased sandbox sand, filled ziplock bags and covered them in pillowcases.I wanted to read a few posts before contributing to this forum and several things we're experiencing with our son are repeated by others in this group, for example, how my son hates (HATES!!!) tummy time and cries hysterically when placed down in this position. Being a premie, I have accepted that he may be a month behind other children his age in development, but his lack of enjoyment of tummy time creates enormous stress for my husband and me because he is not really doing his mini-pushups yet and this prolongs him being on his back thus putting additional pressure on his head.I'd love any advice that can be given on what you've done to position your babies (esp. those who were scooting all over the crib at night because of their increased back/leg strength.) I'd tried sleep positioners since birth, but they never worked with him and now he's too mobile to use them. I'm also worried about continuing the use of sandbags which restrict him from rolling over and I think he should be practicing that as much as possible. I generally do not use sandbags during playtime. I put mirrors and toys he likes in the opposite direction and have an activity mat with toys suspended by arches to keep his attention, but he still turns on the flat side quite a bit.Finally, I'd like to say how immensely relieved I am to have found this e-group. Seeing the improvements from helmets on your babies has given me hope. By the way, I live in Dallas and noticed quite a few Dallasites on the list. If you have recommendations for specialists in the area or could share your experiences with me, I'd be appreciative (can email me personally). I'm taking my son to Medical City Dallas next week to see Dr. Day, who is a craniofacial surgeon and geneticist.Kind regards,For more plagio info

[Guest guest]

Hi ,

Welcome to the group! I've heard good things about Dr. Day from

members in this group. You'll be in good hands. Do you plan on

banding your son?

> My son Judah is 5 months old and we have an appointment next week

> with a craniofacial surgeon to confirm if he has positional

> plagiocephaly.

>

> He was born 3 weeks early by forceps delivery. My son had a

> tendency to look toward the left constantly - in the crib, when we

> held him and in his carseat. We noticed at apprx. 2 months that

his

> head was becoming flat on the back left, his left ear is pushed

> forward (and sticks out while the other does not) and his head has

> an oval shape. We could not really see this when looking straight

> at him, but rather from the top and from the back. After a bit of

> research, I found an explanation for craniosynostosis and

> plagiocephaly along with another issue I thought might be to blame -

> torticollis. My pediatrician couldn't find any muscle bunching

> which is indicative of torticollis, but still prescribed a regimen

> of daily neck stretches chin-to-shoulder for a couple minutes per

> day to stretch his muscles. We also had X-rays taken to eliminate

> the diagnosis of craniosynostosis and the pediatrician stated that

> he most likely has positional plagiocephaly. She told us to make

> sandbags to prop his head straight up at night so we purchased

> sandbox sand, filled ziplock bags and covered them in pillowcases.

>

> I wanted to read a few posts before contributing to this forum and

> several things we're experiencing with our son are repeated by

> others in this group, for example, how my son hates (HATES!!!)

tummy

> time and cries hysterically when placed down in this position.

> Being a premie, I have accepted that he may be a month behind other

> children his age in development, but his lack of enjoyment of tummy

> time creates enormous stress for my husband and me because he is

not

> really doing his mini-pushups yet and this prolongs him being on

his

> back thus putting additional pressure on his head.

>

> I'd love any advice that can be given on what you've done to

> position your babies (esp. those who were scooting all over the

crib

> at night because of their increased back/leg strength.) I'd tried

> sleep positioners since birth, but they never worked with him and

> now he's too mobile to use them. I'm also worried about continuing

> the use of sandbags which restrict him from rolling over and I

think

> he should be practicing that as much as possible. I generally do

> not use sandbags during playtime. I put mirrors and toys he likes

> in the opposite direction and have an activity mat with toys

> suspended by arches to keep his attention, but he still turns on

the

> flat side quite a bit.

>

> Finally, I'd like to say how immensely relieved I am to have found

> this e-group. Seeing the improvements from helmets on your babies

> has given me hope. By the way, I live in Dallas and noticed quite

a

> few Dallasites on the list. If you have recommendations for

> specialists in the area or could share your experiences with me,

I'd

> be appreciative (can email me personally). I'm taking my son to

> Medical City Dallas next week to see Dr. Day, who is a

> craniofacial surgeon and geneticist.

>

> Kind regards,

>

[Guest guest]

Hi and welcome to the group.

Sounds like you've done a lot of research and you're doing all the

right things for you son. Repositioning at night gets more difficult

as they get older and more mobile. I didn't have much luck, but

other members have. I'm sure they'll chime in. My son hated tummy

time also, but you have to do it. Try rolling up a towel and putting

it under his arms and chest. My son's physical therapist suggested

this and it helped with my son. If you chose to band your child, he

is young enough to get some very good results, and you don't have to

worry about the repositioning at night. Good luck at your

appointment next week.

mom to Jake 14mo(DOC Band grad 4/03)

and Tyler 3yrs.

> My son Judah is 5 months old and we have an appointment next week

> with a craniofacial surgeon to confirm if he has positional

> plagiocephaly.

>

> He was born 3 weeks early by forceps delivery. My son had a

> tendency to look toward the left constantly - in the crib, when we

> held him and in his carseat. We noticed at apprx. 2 months that

his

> head was becoming flat on the back left, his left ear is pushed

> forward (and sticks out while the other does not) and his head has

> an oval shape. We could not really see this when looking straight

> at him, but rather from the top and from the back. After a bit of

> research, I found an explanation for craniosynostosis and

> plagiocephaly along with another issue I thought might be to blame -

> torticollis. My pediatrician couldn't find any muscle bunching

> which is indicative of torticollis, but still prescribed a regimen

> of daily neck stretches chin-to-shoulder for a couple minutes per

> day to stretch his muscles. We also had X-rays taken to eliminate

> the diagnosis of craniosynostosis and the pediatrician stated that

> he most likely has positional plagiocephaly. She told us to make

> sandbags to prop his head straight up at night so we purchased

> sandbox sand, filled ziplock bags and covered them in pillowcases.

>

> I wanted to read a few posts before contributing to this forum and

> several things we're experiencing with our son are repeated by

> others in this group, for example, how my son hates (HATES!!!)

tummy

> time and cries hysterically when placed down in this position.

> Being a premie, I have accepted that he may be a month behind other

> children his age in development, but his lack of enjoyment of tummy

> time creates enormous stress for my husband and me because he is

not

> really doing his mini-pushups yet and this prolongs him being on

his

> back thus putting additional pressure on his head.

>

> I'd love any advice that can be given on what you've done to

> position your babies (esp. those who were scooting all over the

crib

> at night because of their increased back/leg strength.) I'd tried

> sleep positioners since birth, but they never worked with him and

> now he's too mobile to use them. I'm also worried about continuing

> the use of sandbags which restrict him from rolling over and I

think

> he should be practicing that as much as possible. I generally do

> not use sandbags during playtime. I put mirrors and toys he likes

> in the opposite direction and have an activity mat with toys

> suspended by arches to keep his attention, but he still turns on

the

> flat side quite a bit.

>

> Finally, I'd like to say how immensely relieved I am to have found

> this e-group. Seeing the improvements from helmets on your babies

> has given me hope. By the way, I live in Dallas and noticed quite

a

> few Dallasites on the list. If you have recommendations for

> specialists in the area or could share your experiences with me,

I'd

> be appreciative (can email me personally). I'm taking my son to

> Medical City Dallas next week to see Dr. Day, who is a

> craniofacial surgeon and geneticist.

>

> Kind regards,

>

[Guest guest]

Hi ,

Thanks for the welcome. Yes, if Dr. Day recommends banding, I will

be more than happy to go this route. Anything to round out my

baby's head and correct his ear placement. I will add that he has

other problems: sebaceous naevus, a pre-cancerous skin lesion on top

of his head that was there since birth and possible deafness in one

or both ears. He had surgery yesterday to implant tubes after

failing numerous hearing screens and us trying to drain middle ear

fluid via a 6-week Sudafed regimen.

Long story short: I've got a wonderful son who is bright, handsome

and has a great personality. But, little kids can be mean and I'd

like to eliminate as many of the problems he is facing as possible

so that he won't experience the burden of being singled out in grade

school.

Regards,

--- In Plagiocephaly , " stripes6060 " <taime@o...>

wrote:

> Hi ,

> Welcome to the group! I've heard good things about Dr. Day from

> members in this group. You'll be in good hands. Do you plan on

> banding your son?

>

[Guest guest]

,

Welcome to the group. You will be very pleased with Dr. Day. He is

honest and will give you all your options. We were very pleased

with him and CT here in Dallas. Your son is at the perfect age for

banding with great results. We tried repositioning our son and did

PT for his tort, but still banded and it was the BEST decision we

have ever made. Twelve weeks later, Drew has a perfectly round

head. Best of luck!!

Take care,

Randi

mom to Drew 9 months DOC grad 7/2003

> My son Judah is 5 months old and we have an appointment next week

> with a craniofacial surgeon to confirm if he has positional

> plagiocephaly.

>

> He was born 3 weeks early by forceps delivery. My son had a

> tendency to look toward the left constantly - in the crib, when we

> held him and in his carseat. We noticed at apprx. 2 months that

his

> head was becoming flat on the back left, his left ear is pushed

> forward (and sticks out while the other does not) and his head has

> an oval shape. We could not really see this when looking straight

> at him, but rather from the top and from the back. After a bit of

> research, I found an explanation for craniosynostosis and

> plagiocephaly along with another issue I thought might be to

blame -

> torticollis. My pediatrician couldn't find any muscle bunching

> which is indicative of torticollis, but still prescribed a regimen

> of daily neck stretches chin-to-shoulder for a couple minutes per

> day to stretch his muscles. We also had X-rays taken to eliminate

> the diagnosis of craniosynostosis and the pediatrician stated that

> he most likely has positional plagiocephaly. She told us to make

> sandbags to prop his head straight up at night so we purchased

> sandbox sand, filled ziplock bags and covered them in pillowcases.

>

> I wanted to read a few posts before contributing to this forum and

> several things we're experiencing with our son are repeated by

> others in this group, for example, how my son hates (HATES!!!)

tummy

> time and cries hysterically when placed down in this position.

> Being a premie, I have accepted that he may be a month behind

other

> children his age in development, but his lack of enjoyment of

tummy

> time creates enormous stress for my husband and me because he is

not

> really doing his mini-pushups yet and this prolongs him being on

his

> back thus putting additional pressure on his head.

>

> I'd love any advice that can be given on what you've done to

> position your babies (esp. those who were scooting all over the

crib

> at night because of their increased back/leg strength.) I'd tried

> sleep positioners since birth, but they never worked with him and

> now he's too mobile to use them. I'm also worried about

continuing

> the use of sandbags which restrict him from rolling over and I

think

> he should be practicing that as much as possible. I generally do

> not use sandbags during playtime. I put mirrors and toys he likes

> in the opposite direction and have an activity mat with toys

> suspended by arches to keep his attention, but he still turns on

the

> flat side quite a bit.

>

> Finally, I'd like to say how immensely relieved I am to have found

> this e-group. Seeing the improvements from helmets on your babies

> has given me hope. By the way, I live in Dallas and noticed quite

a

> few Dallasites on the list. If you have recommendations for

> specialists in the area or could share your experiences with me,

I'd

> be appreciative (can email me personally). I'm taking my son to

> Medical City Dallas next week to see Dr. Day, who is a

> craniofacial surgeon and geneticist.

>

> Kind regards,

>

[Guest guest]

Hi,

Welcome to the group! When you first joined you were sent an email

telling you the difference between the 2 bands. Please read it. Also

in the files section their is a comparsion chart, please read that

too.

The STARband is a great product, as long as the orthotist using it is

experienced.

Where are you located? Maybe we have a member that has used the same

place you are. I'm sure they'll share their experience with you.

Please keep us posted!

--- In Plagiocephaly , " bamagurl96 " <bamagurl96@y...>

wrote:

> Hi anyone!!

>

> My baby girl Caroline was just casted on Friday and it was a

horrific

> experience. I think I was more traumatized by it than her though,

> luckily. I know that we are doing the right thing for her but do

have

> many concerns. I would appreciate anyone's comments to ease my

mind.

> First has anyone used Orthomerica brand? If so, were you pleased

> with the results/services? The nearest DocBrand facility is 3hrs

> away compared to an Orthomerica facility only 10 minutes away.

> However, I do not want to compromise my daughter's progress because

> of convenience. Is anyone familiar with Orthomerica's reputation?

>

> Thanks so much!!!!!!

[Guest guest]

Hi!

Well orthomerica makes several types of bands. We used the starband which is one of the most common bands they produce and we had great results. With their bands it is important to make sure that your ortho has plenty of experience, since the ortho will be monitoring Caroline's treatment, and not orthomerica. They just produce products that certified orthotists can use. There is a list of questions you can ask your ortho to determine experience at http://www.orthomerica.com just go to the cranial remoulding area and they have great info there. Where are you located? Maybe there is a member that has used the same ortho as you.

mom to Vivian star gradbamagurl96 <bamagurl96@...> wrote:

Hi anyone!!My baby girl Caroline was just casted on Friday and it was a horrific experience. I think I was more traumatized by it than her though, luckily. I know that we are doing the right thing for her but do have many concerns. I would appreciate anyone's comments to ease my mind. First has anyone used Orthomerica brand? If so, were you pleased with the results/services? The nearest DocBrand facility is 3hrs away compared to an Orthomerica facility only 10 minutes away. However, I do not want to compromise my daughter's progress because of convenience. Is anyone familiar with Orthomerica's reputation?Thanks so much!!!!!!For more plagio info

[Guest guest]

Wow! Thanks for such quick responses!!! I am located in ton,

South Carolina. I was very happy with the Orthotist we met with, it

(the casting) was just an experience I was not prepared for! If you

know of anyone in this area, please let me know! Congratulations to

Vivian!!!!

> Hi anyone!!

>

> My baby girl Caroline was just casted on Friday and it was a

horrific

> experience. I think I was more traumatized by it than her though,

> luckily. I know that we are doing the right thing for her but do

have

> many concerns. I would appreciate anyone's comments to ease my

mind.

> First has anyone used Orthomerica brand? If so, were you pleased

> with the results/services? The nearest DocBrand facility is 3hrs

> away compared to an Orthomerica facility only 10 minutes away.

> However, I do not want to compromise my daughter's progress because

> of convenience. Is anyone familiar with Orthomerica's reputation?

>

> Thanks so much!!!!!!

>

>

>

[Guest guest]

Hi and welcome to the group! Let us know when the band is in!

Dustie

--- In Plagiocephaly , " bamagurl96 " <bamagurl96@y...>

wrote:

> Hi anyone!!

>

> My baby girl Caroline was just casted on Friday and it was a

horrific

> experience. I think I was more traumatized by it than her though,

> luckily. I know that we are doing the right thing for her but do

have

> many concerns. I would appreciate anyone's comments to ease my

mind.

> First has anyone used Orthomerica brand? If so, were you pleased

> with the results/services? The nearest DocBrand facility is 3hrs

> away compared to an Orthomerica facility only 10 minutes away.

> However, I do not want to compromise my daughter's progress because

> of convenience. Is anyone familiar with Orthomerica's reputation?

>

> Thanks so much!!!!!!

[Guest guest]

Sorry i am late to replying. The STARband is a great product. You need to make sure the ortho is experienced. Maybe someone in the group has used your facility and will chime in. Jenna received 80% correction in just 12 weeks! She was banded at 9 months. Please let us know when her band comes in.

Angie and Jenna

New Member

Hi anyone!!My baby girl Caroline was just casted on Friday and it was a horrific experience. I think I was more traumatized by it than her though, luckily. I know that we are doing the right thing for her but do have many concerns. I would appreciate anyone's comments to ease my mind. First has anyone used Orthomerica brand? If so, were you pleased with the results/services? The nearest DocBrand facility is 3hrs away compared to an Orthomerica facility only 10 minutes away. However, I do not want to compromise my daughter's progress because of convenience. Is anyone familiar with Orthomerica's reputation?Thanks so much!!!!!!For more plagio info

[Guest guest]

Hi !

I am also from grand rapids! We have like 4 members right now from GR, we have all used Free Bed hospital downtown for banding and they have been really great. Anywhoo, if you are concerned about your son's headshape then you need to trust your instincts and do something about it. I would suggest asking your ped for a referral to a ped neuro who can evalute his headshape asap. If Ben is showing ear assymetry it is definately something that I would pursue. This will help to give you some insight on his level of severity and what you can do about it. Unfortunately, some dr's still ascribe to the "it will take care of itself" theory but it most times is not true, and as Ben is 8 months you will want to do it soon.

If you do need to band, try not to fret too much. It will be harder on you than on Ben. Most babies actually adjust very well to their bands. You'd be amazed. It's like they could care less that the band is even on. Some babies have a rough time the first week or so but adjust after that. Banding Vivian was the best thing we have done for her, she didn't mind it at all and her head looks great now.

mom to Vivian star grad - MIkaren <helge4@...> wrote:

I am a new member. I am in the beginning stage. I have been reading the e-mails posted and I am getting a little scared. I don't want my son to grow up with a head abnormality but I also don't want him to cry all the time and go through what I have been reading of other parents. I keep going back and forth if my son's head is bad enough. I have been bringing up the subject at his doctors appt's since my son was 2 months old and he(my doctor) keeps telling me it will correct itself. I have really not seen many changes except that my son's hair is growing so it seems to hide his head shape better. My main concern is his ears. One is higher and pushed more forward then the other. My son is 8 months old now and I fear if we don't take action it may be too late. H. mother of Ben

Grand Rapids MichiganFor more plagio info