Re: new to board - 5 mo. son w/ plagio & torticollis/Seattle CLARREN helmet

[Guest guest]

Hi Gail,

Welcome to the group! I have heard of the Clarren helmet in

Seattle. I checked the HELMET/BAND DATABASE in the DATABASE section

of the group, and looked up your facility. There is an email

address of a group member that has experience with this helmet who

is willing to be contacted offlist. Here is the email:

kheyes@... I think that is Kathy, whose son is in

the Clarren in the PHOTOS section under H. Also, we recently

had a new member post about a week ago, Steph, whose son will

be getting the Clarren. Her email is: Stephanino@... Why

don't you send them a note to see how their experience went?

I believe the Clarren helmet was first designed in 1979 by Dr.

Clarren himself, a pioneer in cranial remolding. As the Orthomerica

website says, this is a helmet of " passive " design, which relies on

growth spurts alone for the baby's head to grow and fill out into

the rounded shape of the helmet, so " passive " helmets work best on

younger babies who have many growth spurts ahead of them. The only

other helmet I know of in current use os a design that covers the

ears is the helmet used at the Hospital for Sick Children in

Canada. Although I don't know if the other Orthomerica bands/caps

are available in the Seattle facility, these other Orthomerica

products are of an " active " design, which means they use gentle

pressure to actually recontour the head, in addition to growth

spurts. These " active " types of helmets can therefore be used on

older babies up to 18 months of age.

I would be frustrated, too, if my son had to have a second evalution

after already getting one at the craniofacial clinic. Where will he

go for this second evaluation? Can you get on an appointment

cancellation list to have a chance to get in a little earlier? Did

they tell you how soon after the laser scanning that your helmet

would be available?

I hope the other group members who have used that same helmet will

be of some help to you with your questions and concerns!

Would you keep us posted, and let us know if we can help in any way?

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " gailee11 " <gailee11@y...>

wrote:

> Hello everyone. I found out about this board from Rhonda

(Collin's

> mom), who I believe is also a member. My 5-month old son,

,

> has plagiocephaly and torticollis, and we are in the process of

> starting physical therapy and waiting to see if a helmet will be

> necessary. We do not live near a CTI location, but Seattle

> Children's hospital uses actual helmets to accomplish similar

> results. (check it out at

> http://www.orthomerica.com/company/press/clarren_pr.htm ) It

looks

> a lot more invasive than the DOC band, doesn't it? Also, they

told

> us it would not affect the alignment of his ears, which are a

little

> off. On the brighter side, instead of casting, they do a laser

> image of his head to make the helmet.

>

> I am frustrated because we have been pursuing treatment since he

was

> 4 months old, and it has taken over a month to go back and forth

> between primary care doctor, the craniofacial clinic (for the

> diagnosis), back to the primary care doctor, and now a full

> evaluation from a developmental delay center just to get physical

> therapy for his neck. We have been told that 6 months is the

> optimum time to start helmet therapy, and after that point the

> amount of time it takes to correct the plagiocephaly is doubled

with

> each additional month. Repositioning him and working with him on

> our own have greatly improved his range of motion in his neck, and

> as a result, his head is evening out a bit. We were hoping that

the

> physical therapy would improve it even more and the helmet

wouldn't

> be necessary. But I'm doubtful at this point, especially

> considering how long it will take to start therapy. Today I found

> out that it will take 3 weeks just to get an evaluation

appointment,

> even though he was already evaluated at the craniofacial clinic in

> Seattle. The doctor at Children's told us on a scale of 1-10, 1

> being barely noticeable and 10 being severe, was about a

> 4.5. But I'm a mom, and I worry. I just don't want my happy baby

> to be sad and uncomfortable. I am also beating myself up because

my

> husband and I noticed how much he favored turning left at 2

months,

> and we didn't ask the doctor about it until his 4 month checkup.

>

> I'd appreciate any advice moms and dads out there might have for

> us. Also, if there's anyone from the Seattle area or who has

> experience with the Orthoamerica helmet, it would be great to hear

> about progress in your child. Thank you!

>

> Gail

>

> Port Orchard, Washington

[Guest guest]

Thank you Christie, , Angie, ...

It's great to find people who understand what we're going through.

I will be sure to contact the moms with experience with the Clarren

helmet. I spoke with the clinic again today, and asked if the

STARband was available. She said that Children's doesn't use it,

but there are other places in the area that do. She seemed to think

the helmet was the best option for because he is still so

young and has some major growth ahead of him. She felt the pressure

was unnecessary to correct the plagio, and passive therapy would be

sufficient. I was concerned about the chin strap on the helmet, but

she assured me that it is removable and many parents leave it off

once the baby grows into the helmet a little. He is teething, and

will probably drool all over it, not to mention he barely even has a

neck! She said we'd get 2 washable straps and many parents cover it

with a cut-out sock to absorb the drool. My husband and I discussed

it and we are going to give it a try.

I had an emotional crisis today dealing with the physical therapy

situation. My HMO referred us to another physical therapy clinic,

and we got an appointment already. Yay! So when the other clinic

called me to schedule their " evaluation " I told them we would not be

needing their services. The woman there really pushed to open a

file for anyway, saying we might need their developmental

delay services. I WAS SO MAD! Why would she think he would have

developmental delays? I called my pediatrician, who was furious

that they would even imply that plagio or torticollis would lead to

developmental delays. She said plagio is positional and torticollis

is muscular, resulting from the position (or sometimes vice-versa)

and I should ignore her. But it was just a lot to go through in one

day. I must be spending about 2 hours a day on the phone for all of

this, while working a full-time job.

Anyway, we have an appointment for his " laser scan " in early March.

They want us to wait until he is 6 months old. We have some time to

adjust the idea. My husband is all in favor of painting his helmet

like a University of Washington Huskies football helmet. Go Dawgs.

Thanks again for your support. I know this board is going to be

helpful!

Gail

's mom in Port Orchard

> > Hello everyone. I found out about this board from Rhonda

> (Collin's

> > mom), who I believe is also a member. My 5-month old son,

> ,

> > has plagiocephaly and torticollis, and we are in the process of

> > starting physical therapy and waiting to see if a helmet will be

> > necessary. We do not live near a CTI location, but Seattle

> > Children's hospital uses actual helmets to accomplish similar

> > results. (check it out at

> > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> looks

> > a lot more invasive than the DOC band, doesn't it? Also, they

> told

> > us it would not affect the alignment of his ears, which are a

> little

> > off. On the brighter side, instead of casting, they do a laser

> > image of his head to make the helmet.

> >

> > I am frustrated because we have been pursuing treatment since he

> was

> > 4 months old, and it has taken over a month to go back and forth

> > between primary care doctor, the craniofacial clinic (for the

> > diagnosis), back to the primary care doctor, and now a full

> > evaluation from a developmental delay center just to get

physical

> > therapy for his neck. We have been told that 6 months is the

> > optimum time to start helmet therapy, and after that point the

> > amount of time it takes to correct the plagiocephaly is doubled

> with

> > each additional month. Repositioning him and working with him

on

> > our own have greatly improved his range of motion in his neck,

and

> > as a result, his head is evening out a bit. We were hoping that

> the

> > physical therapy would improve it even more and the helmet

> wouldn't

> > be necessary. But I'm doubtful at this point, especially

> > considering how long it will take to start therapy. Today I

found

> > out that it will take 3 weeks just to get an evaluation

> appointment,

> > even though he was already evaluated at the craniofacial clinic

in

> > Seattle. The doctor at Children's told us on a scale of 1-10, 1

> > being barely noticeable and 10 being severe, was about a

> > 4.5. But I'm a mom, and I worry. I just don't want my happy

baby

> > to be sad and uncomfortable. I am also beating myself up

because

> my

> > husband and I noticed how much he favored turning left at 2

> months,

> > and we didn't ask the doctor about it until his 4 month checkup.

> >

> > I'd appreciate any advice moms and dads out there might have for

> > us. Also, if there's anyone from the Seattle area or who has

> > experience with the Orthoamerica helmet, it would be great to

hear

> > about progress in your child. Thank you!

> >

> > Gail

> >

> > Port Orchard, Washington

[Guest guest]

Thank you Christie, , Angie, ...

It's great to find people who understand what we're going through.

I will be sure to contact the moms with experience with the Clarren

helmet. I spoke with the clinic again today, and asked if the

STARband was available. She said that Children's doesn't use it,

but there are other places in the area that do. She seemed to think

the helmet was the best option for because he is still so

young and has some major growth ahead of him. She felt the pressure

was unnecessary to correct the plagio, and passive therapy would be

sufficient. I was concerned about the chin strap on the helmet, but

she assured me that it is removable and many parents leave it off

once the baby grows into the helmet a little. He is teething, and

will probably drool all over it, not to mention he barely even has a

neck! She said we'd get 2 washable straps and many parents cover it

with a cut-out sock to absorb the drool. My husband and I discussed

it and we are going to give it a try.

I had an emotional crisis today dealing with the physical therapy

situation. My HMO referred us to another physical therapy clinic,

and we got an appointment already. Yay! So when the other clinic

called me to schedule their " evaluation " I told them we would not be

needing their services. The woman there really pushed to open a

file for anyway, saying we might need their developmental

delay services. I WAS SO MAD! Why would she think he would have

developmental delays? I called my pediatrician, who was furious

that they would even imply that plagio or torticollis would lead to

developmental delays. She said plagio is positional and torticollis

is muscular, resulting from the position (or sometimes vice-versa)

and I should ignore her. But it was just a lot to go through in one

day. I must be spending about 2 hours a day on the phone for all of

this, while working a full-time job.

Anyway, we have an appointment for his " laser scan " in early March.

They want us to wait until he is 6 months old. We have some time to

adjust the idea. My husband is all in favor of painting his helmet

like a University of Washington Huskies football helmet. Go Dawgs.

Thanks again for your support. I know this board is going to be

helpful!

Gail

's mom in Port Orchard

> > Hello everyone. I found out about this board from Rhonda

> (Collin's

> > mom), who I believe is also a member. My 5-month old son,

> ,

> > has plagiocephaly and torticollis, and we are in the process of

> > starting physical therapy and waiting to see if a helmet will be

> > necessary. We do not live near a CTI location, but Seattle

> > Children's hospital uses actual helmets to accomplish similar

> > results. (check it out at

> > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> looks

> > a lot more invasive than the DOC band, doesn't it? Also, they

> told

> > us it would not affect the alignment of his ears, which are a

> little

> > off. On the brighter side, instead of casting, they do a laser

> > image of his head to make the helmet.

> >

> > I am frustrated because we have been pursuing treatment since he

> was

> > 4 months old, and it has taken over a month to go back and forth

> > between primary care doctor, the craniofacial clinic (for the

> > diagnosis), back to the primary care doctor, and now a full

> > evaluation from a developmental delay center just to get

physical

> > therapy for his neck. We have been told that 6 months is the

> > optimum time to start helmet therapy, and after that point the

> > amount of time it takes to correct the plagiocephaly is doubled

> with

> > each additional month. Repositioning him and working with him

on

> > our own have greatly improved his range of motion in his neck,

and

> > as a result, his head is evening out a bit. We were hoping that

> the

> > physical therapy would improve it even more and the helmet

> wouldn't

> > be necessary. But I'm doubtful at this point, especially

> > considering how long it will take to start therapy. Today I

found

> > out that it will take 3 weeks just to get an evaluation

> appointment,

> > even though he was already evaluated at the craniofacial clinic

in

> > Seattle. The doctor at Children's told us on a scale of 1-10, 1

> > being barely noticeable and 10 being severe, was about a

> > 4.5. But I'm a mom, and I worry. I just don't want my happy

baby

> > to be sad and uncomfortable. I am also beating myself up

because

> my

> > husband and I noticed how much he favored turning left at 2

> months,

> > and we didn't ask the doctor about it until his 4 month checkup.

> >

> > I'd appreciate any advice moms and dads out there might have for

> > us. Also, if there's anyone from the Seattle area or who has

> > experience with the Orthoamerica helmet, it would be great to

hear

> > about progress in your child. Thank you!

> >

> > Gail

> >

> > Port Orchard, Washington

[Guest guest]

Hi Gail,

I'm not sure if you received my email that I sent directly to your

account. I am down here in Federal Way, and we are heading up

to Seattle tomorrow to pick up 's helmet. It's so funny to be

reading your post and know exactly who you talked to (Darcy, right?)

and to understand what you are going through. Interesting that she

mentioned the socks on the strap...I hadn't even thought of asking

that, but I have been wondering how difficult it is going to be to

nurse him. I guess we'll find out tomorrow.

also required physical therapy for his torticollis and I want

to encourage you to call your local school district to find out

where they have a program that can offer you services. We have a

Birth to Three Center near us that has provided physical therapy for

both my daughter (now 2 1/2) and our son for torticollis. Our

insurance has paid for a certain percentage, but even if they had

not, the Birth to Three Center would have given us services at no

cost to us. Anyways, just a thought. Or...you could come to Federal

Way...quite a trek, but might be worth it!

-

> > > Hello everyone. I found out about this board from Rhonda

> > (Collin's

> > > mom), who I believe is also a member. My 5-month old son,

> > ,

> > > has plagiocephaly and torticollis, and we are in the process

of

> > > starting physical therapy and waiting to see if a helmet will

be

> > > necessary. We do not live near a CTI location, but Seattle

> > > Children's hospital uses actual helmets to accomplish similar

> > > results. (check it out at

> > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > looks

> > > a lot more invasive than the DOC band, doesn't it? Also, they

> > told

> > > us it would not affect the alignment of his ears, which are a

> > little

> > > off. On the brighter side, instead of casting, they do a

laser

> > > image of his head to make the helmet.

> > >

> > > I am frustrated because we have been pursuing treatment since

he

> > was

> > > 4 months old, and it has taken over a month to go back and

forth

> > > between primary care doctor, the craniofacial clinic (for the

> > > diagnosis), back to the primary care doctor, and now a full

> > > evaluation from a developmental delay center just to get

> physical

> > > therapy for his neck. We have been told that 6 months is the

> > > optimum time to start helmet therapy, and after that point the

> > > amount of time it takes to correct the plagiocephaly is

doubled

> > with

> > > each additional month. Repositioning him and working with him

> on

> > > our own have greatly improved his range of motion in his neck,

> and

> > > as a result, his head is evening out a bit. We were hoping

that

> > the

> > > physical therapy would improve it even more and the helmet

> > wouldn't

> > > be necessary. But I'm doubtful at this point, especially

> > > considering how long it will take to start therapy. Today I

> found

> > > out that it will take 3 weeks just to get an evaluation

> > appointment,

> > > even though he was already evaluated at the craniofacial

clinic

> in

> > > Seattle. The doctor at Children's told us on a scale of 1-10,

1

> > > being barely noticeable and 10 being severe, was about

a

> > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> baby

> > > to be sad and uncomfortable. I am also beating myself up

> because

> > my

> > > husband and I noticed how much he favored turning left at 2

> > months,

> > > and we didn't ask the doctor about it until his 4 month

checkup.

> > >

> > > I'd appreciate any advice moms and dads out there might have

for

> > > us. Also, if there's anyone from the Seattle area or who has

> > > experience with the Orthoamerica helmet, it would be great to

> hear

> > > about progress in your child. Thank you!

> > >

> > > Gail

> > >

> > > Port Orchard, Washington

[Guest guest]

Hi,

Not to upset you, but it's VERY common for babies with torticollis to

be developmentally delayed. We have quite a few members whose babies

were delayed due to tort. My daughter was very delayed due to her

tort. She was in physical therapy for twice a week for three months

she also received early intervention through my state b/c of her

delays. It was all because of her torticollis.

Check out the group called torticolliskids.

Torticolliskids/

> > > Hello everyone. I found out about this board from Rhonda

> > (Collin's

> > > mom), who I believe is also a member. My 5-month old son,

> > ,

> > > has plagiocephaly and torticollis, and we are in the process of

> > > starting physical therapy and waiting to see if a helmet will

be

> > > necessary. We do not live near a CTI location, but Seattle

> > > Children's hospital uses actual helmets to accomplish similar

> > > results. (check it out at

> > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > looks

> > > a lot more invasive than the DOC band, doesn't it? Also, they

> > told

> > > us it would not affect the alignment of his ears, which are a

> > little

> > > off. On the brighter side, instead of casting, they do a laser

> > > image of his head to make the helmet.

> > >

> > > I am frustrated because we have been pursuing treatment since

he

> > was

> > > 4 months old, and it has taken over a month to go back and

forth

> > > between primary care doctor, the craniofacial clinic (for the

> > > diagnosis), back to the primary care doctor, and now a full

> > > evaluation from a developmental delay center just to get

> physical

> > > therapy for his neck. We have been told that 6 months is the

> > > optimum time to start helmet therapy, and after that point the

> > > amount of time it takes to correct the plagiocephaly is doubled

> > with

> > > each additional month. Repositioning him and working with him

> on

> > > our own have greatly improved his range of motion in his neck,

> and

> > > as a result, his head is evening out a bit. We were hoping

that

> > the

> > > physical therapy would improve it even more and the helmet

> > wouldn't

> > > be necessary. But I'm doubtful at this point, especially

> > > considering how long it will take to start therapy. Today I

> found

> > > out that it will take 3 weeks just to get an evaluation

> > appointment,

> > > even though he was already evaluated at the craniofacial clinic

> in

> > > Seattle. The doctor at Children's told us on a scale of 1-10, 1

> > > being barely noticeable and 10 being severe, was about

a

> > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> baby

> > > to be sad and uncomfortable. I am also beating myself up

> because

> > my

> > > husband and I noticed how much he favored turning left at 2

> > months,

> > > and we didn't ask the doctor about it until his 4 month checkup.

> > >

> > > I'd appreciate any advice moms and dads out there might have

for

> > > us. Also, if there's anyone from the Seattle area or who has

> > > experience with the Orthoamerica helmet, it would be great to

> hear

> > > about progress in your child. Thank you!

> > >

> > > Gail

> > >

> > > Port Orchard, Washington

[Guest guest]

Hi Gail,

I'm glad Children's was able to answer your questions. I didn't

think they offered the other types of bands, but I wasn't sure. I

see that Steph already posted a response - it's so helpful to

communicate with another mom going to the same place. Would you

keep us posted on s scan in a couple of weeks? I think

that's the Starscanner, which somebody may have pointed out in a

previous post. We have some examples of these Starscanner reports

in the FILES section of the group if you haven't already been

there. It's amazing to see how progress is charted not only in the

graphic, but also in the many measurements that are taken!

It sounds like an emotional roller coaster with your communications

with the physical therapy clinics. I would be surprised if the

physical therapy clinic was aware of any risk of developmental

delays with plagio, because studies pointing to this risk are only a

few years old or less, and most of the pediatricians aren't even up

on the reading, but they DO exist. There is one large study and one

smaller one that show statistically significant developmental delays

in plagio babies. Other studies are starting to show associations

with alignment related issues, such as auditory processing, visual

field development, sleep apnea, astigmatism, and the like. The

results from these studies remain a big concern, so we try to find

any work on plagio research and link it in the LINKS section,

PLAGIOCEPHALY STUDIES AND RESEARCH folder.

Take care,

Christie (Mom to Repo'd Remy)

> > > Hello everyone. I found out about this board from Rhonda

> > (Collin's

> > > mom), who I believe is also a member. My 5-month old son,

> > ,

> > > has plagiocephaly and torticollis, and we are in the process

of

> > > starting physical therapy and waiting to see if a helmet will

be

> > > necessary. We do not live near a CTI location, but Seattle

> > > Children's hospital uses actual helmets to accomplish similar

> > > results. (check it out at

> > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > looks

> > > a lot more invasive than the DOC band, doesn't it? Also, they

> > told

> > > us it would not affect the alignment of his ears, which are a

> > little

> > > off. On the brighter side, instead of casting, they do a

laser

> > > image of his head to make the helmet.

> > >

> > > I am frustrated because we have been pursuing treatment since

he

> > was

> > > 4 months old, and it has taken over a month to go back and

forth

> > > between primary care doctor, the craniofacial clinic (for the

> > > diagnosis), back to the primary care doctor, and now a full

> > > evaluation from a developmental delay center just to get

> physical

> > > therapy for his neck. We have been told that 6 months is the

> > > optimum time to start helmet therapy, and after that point the

> > > amount of time it takes to correct the plagiocephaly is

doubled

> > with

> > > each additional month. Repositioning him and working with him

> on

> > > our own have greatly improved his range of motion in his neck,

> and

> > > as a result, his head is evening out a bit. We were hoping

that

> > the

> > > physical therapy would improve it even more and the helmet

> > wouldn't

> > > be necessary. But I'm doubtful at this point, especially

> > > considering how long it will take to start therapy. Today I

> found

> > > out that it will take 3 weeks just to get an evaluation

> > appointment,

> > > even though he was already evaluated at the craniofacial

clinic

> in

> > > Seattle. The doctor at Children's told us on a scale of 1-10,

1

> > > being barely noticeable and 10 being severe, was about

a

> > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> baby

> > > to be sad and uncomfortable. I am also beating myself up

> because

> > my

> > > husband and I noticed how much he favored turning left at 2

> > months,

> > > and we didn't ask the doctor about it until his 4 month

checkup.

> > >

> > > I'd appreciate any advice moms and dads out there might have

for

> > > us. Also, if there's anyone from the Seattle area or who has

> > > experience with the Orthoamerica helmet, it would be great to

> hear

> > > about progress in your child. Thank you!

> > >

> > > Gail

> > >

> > > Port Orchard, Washington

[Guest guest]

Gail,

While plagio may not cause developmental delays, tort can cause delays.

Depending on the severity of the tort, it can effect fine and gross motor

skills. My son is going to be a year old in a week and is just now sitting

up on his own and that is will PT 3x a week and OT 1x a week. Since

Jordan's had left side tort, his right arm and leg are very weak. Due to

always looking left for so long, he didn't seem to realize that there were

things on the right side to reach for etc. Also his tilt in his neck caused

him to position his pelvis tilted to compensate for balance.

While Jordan's tort is very severe, even a mild case of tort can cause a

mini chain reaction of delays. We are very hopeful that Jordan will, with

the help of therapy, outgrow his delays. I'm sure the woman at the clinic

didn't mean to offend you but I think that she had 's interest in

mind and if he does need a little help due to dev. delays my opinion is it's

much better now, while they are little, than later.

HTH,

~~Buffalo, NY

Mama to:

, Jordan (cranio,plagio & tort~Starband 10-24-03) &

http://members.ebay.com/aboutme/mama2jared/

> I had an emotional crisis today dealing with the physical therapy

> situation. My HMO referred us to another physical therapy clinic,

> and we got an appointment already. Yay! So when the other clinic

> called me to schedule their " evaluation " I told them we would not be

> needing their services. The woman there really pushed to open a

> file for anyway, saying we might need their developmental

> delay services. I WAS SO MAD! Why would she think he would have

> developmental delays? I called my pediatrician, who was furious

> that they would even imply that plagio or torticollis would lead to

> developmental delays. She said plagio is positional and torticollis

> is muscular, resulting from the position (or sometimes vice-versa)

> and I should ignore her. But it was just a lot to go through in one

> day. I must be spending about 2 hours a day on the phone for all of

> this, while working a full-time job.

[Guest guest]

Hi ! Thanks for responding! I sent you a direct email to

your aol address. I look forward to corresponding with you and

sharing and 's stories. Good luck getting 's helmet

today. I can't wait to hear how he does with it.

Take care,

Gail

> > > > Hello everyone. I found out about this board from Rhonda

> > > (Collin's

> > > > mom), who I believe is also a member. My 5-month old son,

> > > ,

> > > > has plagiocephaly and torticollis, and we are in the process

> of

> > > > starting physical therapy and waiting to see if a helmet will

> be

> > > > necessary. We do not live near a CTI location, but Seattle

> > > > Children's hospital uses actual helmets to accomplish similar

> > > > results. (check it out at

> > > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > > looks

> > > > a lot more invasive than the DOC band, doesn't it? Also,

they

> > > told

> > > > us it would not affect the alignment of his ears, which are a

> > > little

> > > > off. On the brighter side, instead of casting, they do a

> laser

> > > > image of his head to make the helmet.

> > > >

> > > > I am frustrated because we have been pursuing treatment since

> he

> > > was

> > > > 4 months old, and it has taken over a month to go back and

> forth

> > > > between primary care doctor, the craniofacial clinic (for the

> > > > diagnosis), back to the primary care doctor, and now a full

> > > > evaluation from a developmental delay center just to get

> > physical

> > > > therapy for his neck. We have been told that 6 months is the

> > > > optimum time to start helmet therapy, and after that point

the

> > > > amount of time it takes to correct the plagiocephaly is

> doubled

> > > with

> > > > each additional month. Repositioning him and working with

him

> > on

> > > > our own have greatly improved his range of motion in his

neck,

> > and

> > > > as a result, his head is evening out a bit. We were hoping

> that

> > > the

> > > > physical therapy would improve it even more and the helmet

> > > wouldn't

> > > > be necessary. But I'm doubtful at this point, especially

> > > > considering how long it will take to start therapy. Today I

> > found

> > > > out that it will take 3 weeks just to get an evaluation

> > > appointment,

> > > > even though he was already evaluated at the craniofacial

> clinic

> > in

> > > > Seattle. The doctor at Children's told us on a scale of 1-10,

> 1

> > > > being barely noticeable and 10 being severe, was

about

> a

> > > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> > baby

> > > > to be sad and uncomfortable. I am also beating myself up

> > because

> > > my

> > > > husband and I noticed how much he favored turning left at 2

> > > months,

> > > > and we didn't ask the doctor about it until his 4 month

> checkup.

> > > >

> > > > I'd appreciate any advice moms and dads out there might have

> for

> > > > us. Also, if there's anyone from the Seattle area or who has

> > > > experience with the Orthoamerica helmet, it would be great to

> > hear

> > > > about progress in your child. Thank you!

> > > >

> > > > Gail

> > > >

> > > > Port Orchard, Washington

[Guest guest]

Thanks Christie,

I got in touch with . It's nice to have someone local who

is going through the same process. I will be sure to keep you

updated on his progress after his scan. We will take some " before "

pictures this week, too.

I did see one study on developmental delays in plagio babies. It

seems that the results are not conclusive yet. I explored this

site's other links as well, and I'll be sure to check out the studies

you mentioned. I am determined to be informed and on the lookout for

any warning signs before it's too late. I don't want to make the

same mistake twice!

BTW, I saw Remy's picture - she is gorgeous. So she never had a band

or helmet? How long did you reposition her before her head

corrected? And how old was she when you started? I'm curious.

Thanks for your help,

Gail

> > > > Hello everyone. I found out about this board from Rhonda

> > > (Collin's

> > > > mom), who I believe is also a member. My 5-month old son,

> > > ,

> > > > has plagiocephaly and torticollis, and we are in the process

> of

> > > > starting physical therapy and waiting to see if a helmet will

> be

> > > > necessary. We do not live near a CTI location, but Seattle

> > > > Children's hospital uses actual helmets to accomplish similar

> > > > results. (check it out at

> > > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > > looks

> > > > a lot more invasive than the DOC band, doesn't it? Also,

they

> > > told

> > > > us it would not affect the alignment of his ears, which are a

> > > little

> > > > off. On the brighter side, instead of casting, they do a

> laser

> > > > image of his head to make the helmet.

> > > >

> > > > I am frustrated because we have been pursuing treatment since

> he

> > > was

> > > > 4 months old, and it has taken over a month to go back and

> forth

> > > > between primary care doctor, the craniofacial clinic (for the

> > > > diagnosis), back to the primary care doctor, and now a full

> > > > evaluation from a developmental delay center just to get

> > physical

> > > > therapy for his neck. We have been told that 6 months is the

> > > > optimum time to start helmet therapy, and after that point

the

> > > > amount of time it takes to correct the plagiocephaly is

> doubled

> > > with

> > > > each additional month. Repositioning him and working with

him

> > on

> > > > our own have greatly improved his range of motion in his

neck,

> > and

> > > > as a result, his head is evening out a bit. We were hoping

> that

> > > the

> > > > physical therapy would improve it even more and the helmet

> > > wouldn't

> > > > be necessary. But I'm doubtful at this point, especially

> > > > considering how long it will take to start therapy. Today I

> > found

> > > > out that it will take 3 weeks just to get an evaluation

> > > appointment,

> > > > even though he was already evaluated at the craniofacial

> clinic

> > in

> > > > Seattle. The doctor at Children's told us on a scale of 1-10,

> 1

> > > > being barely noticeable and 10 being severe, was

about

> a

> > > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> > baby

> > > > to be sad and uncomfortable. I am also beating myself up

> > because

> > > my

> > > > husband and I noticed how much he favored turning left at 2

> > > months,

> > > > and we didn't ask the doctor about it until his 4 month

> checkup.

> > > >

> > > > I'd appreciate any advice moms and dads out there might have

> for

> > > > us. Also, if there's anyone from the Seattle area or who has

> > > > experience with the Orthoamerica helmet, it would be great to

> > hear

> > > > about progress in your child. Thank you!

> > > >

> > > > Gail

> > > >

> > > > Port Orchard, Washington

[Guest guest]

Gail,

I received your email this morning and sent a response back to you

private email with my telephone number. The Clarren helmet is the

only helmet available in this area due to the fact that Dr. Clarren

developed it right here in Seattle 20-some years ago. As for the

chin strap, we just throw 's in the washer in one of those

mesh laundry bags. So far it has taken all of the stains out.

Please contact me with any questions...I really look forward to

hearing from you!

Kathy and

> > > Hello everyone. I found out about this board from Rhonda

> > (Collin's

> > > mom), who I believe is also a member. My 5-month old son,

> > ,

> > > has plagiocephaly and torticollis, and we are in the process

of

> > > starting physical therapy and waiting to see if a helmet will

be

> > > necessary. We do not live near a CTI location, but Seattle

> > > Children's hospital uses actual helmets to accomplish similar

> > > results. (check it out at

> > > http://www.orthomerica.com/company/press/clarren_pr.htm ) It

> > looks

> > > a lot more invasive than the DOC band, doesn't it? Also, they

> > told

> > > us it would not affect the alignment of his ears, which are a

> > little

> > > off. On the brighter side, instead of casting, they do a

laser

> > > image of his head to make the helmet.

> > >

> > > I am frustrated because we have been pursuing treatment since

he

> > was

> > > 4 months old, and it has taken over a month to go back and

forth

> > > between primary care doctor, the craniofacial clinic (for the

> > > diagnosis), back to the primary care doctor, and now a full

> > > evaluation from a developmental delay center just to get

> physical

> > > therapy for his neck. We have been told that 6 months is the

> > > optimum time to start helmet therapy, and after that point the

> > > amount of time it takes to correct the plagiocephaly is

doubled

> > with

> > > each additional month. Repositioning him and working with him

> on

> > > our own have greatly improved his range of motion in his neck,

> and

> > > as a result, his head is evening out a bit. We were hoping

that

> > the

> > > physical therapy would improve it even more and the helmet

> > wouldn't

> > > be necessary. But I'm doubtful at this point, especially

> > > considering how long it will take to start therapy. Today I

> found

> > > out that it will take 3 weeks just to get an evaluation

> > appointment,

> > > even though he was already evaluated at the craniofacial

clinic

> in

> > > Seattle. The doctor at Children's told us on a scale of 1-10,

1

> > > being barely noticeable and 10 being severe, was about

a

> > > 4.5. But I'm a mom, and I worry. I just don't want my happy

> baby

> > > to be sad and uncomfortable. I am also beating myself up

> because

> > my

> > > husband and I noticed how much he favored turning left at 2

> > months,

> > > and we didn't ask the doctor about it until his 4 month

checkup.

> > >

> > > I'd appreciate any advice moms and dads out there might have

for

> > > us. Also, if there's anyone from the Seattle area or who has

> > > experience with the Orthoamerica helmet, it would be great to

> hear

> > > about progress in your child. Thank you!

> > >

> > > Gail

> > >

> > > Port Orchard, Washington

[Guest guest]

,

I know you are picking up your helmet today and I was just thinking

about you both. cried for about 10 seconds when they first

put it on him and then it was over. Now he knows that when he hears

the velcro strap come undone his little head will be free to be

rubbed and he makes the funniest little face when you pull it off.

Believe me the whole situation is a lot more stressful on us than

them. Anyway I was just thinking about you both and I know all will

go well.

I did send a few emails to your other email but I didn't hear back

so I hope all is well!

Did do your scan?

Kathy and

> > > > Hello everyone. I found out about this board from Rhonda

> > > (Collin's

> > > > mom), who I believe is also a member. My 5-month old son,

> > > ,

> > > > has plagiocephaly and torticollis, and we are in the process

> of

> > > > starting physical therapy and waiting to see if a helmet

will

> be

> > > > necessary. We do not live near a CTI location, but Seattle

> > > > Children's hospital uses actual helmets to accomplish

similar

> > > > results. (check it out at

> > > > http://www.orthomerica.com/company/press/clarren_pr.htm )

It

> > > looks

> > > > a lot more invasive than the DOC band, doesn't it? Also,

they

> > > told

> > > > us it would not affect the alignment of his ears, which are

a

> > > little

> > > > off. On the brighter side, instead of casting, they do a

> laser

> > > > image of his head to make the helmet.

> > > >

> > > > I am frustrated because we have been pursuing treatment

since

> he

> > > was

> > > > 4 months old, and it has taken over a month to go back and

> forth

> > > > between primary care doctor, the craniofacial clinic (for

the

> > > > diagnosis), back to the primary care doctor, and now a full

> > > > evaluation from a developmental delay center just to get

> > physical

> > > > therapy for his neck. We have been told that 6 months is

the

> > > > optimum time to start helmet therapy, and after that point

the

> > > > amount of time it takes to correct the plagiocephaly is

> doubled

> > > with

> > > > each additional month. Repositioning him and working with

him

> > on

> > > > our own have greatly improved his range of motion in his

neck,

> > and

> > > > as a result, his head is evening out a bit. We were hoping

> that

> > > the

> > > > physical therapy would improve it even more and the helmet

> > > wouldn't

> > > > be necessary. But I'm doubtful at this point, especially

> > > > considering how long it will take to start therapy. Today I

> > found

> > > > out that it will take 3 weeks just to get an evaluation

> > > appointment,

> > > > even though he was already evaluated at the craniofacial

> clinic

> > in

> > > > Seattle. The doctor at Children's told us on a scale of 1-

10,

> 1

> > > > being barely noticeable and 10 being severe, was

about

> a

> > > > 4.5. But I'm a mom, and I worry. I just don't want my

happy

> > baby

> > > > to be sad and uncomfortable. I am also beating myself up

> > because

> > > my

> > > > husband and I noticed how much he favored turning left at 2

> > > months,

> > > > and we didn't ask the doctor about it until his 4 month

> checkup.

> > > >

> > > > I'd appreciate any advice moms and dads out there might have

> for

> > > > us. Also, if there's anyone from the Seattle area or who

has

> > > > experience with the Orthoamerica helmet, it would be great

to

> > hear

> > > > about progress in your child. Thank you!

> > > >

> > > > Gail

> > > >

> > > > Port Orchard, Washington