Re: Need recommendation for craniofacial specialist; pediatrician in Seattle/Tacoma

[Guest guest]

Hi,

Welcome to the group! I hope we are able to help you with some of

your questions and concerns.

We have a lot of reference materials here at the group site. There

is a BEFORE AND AFTER photos folder in the PHOTOS section, which

shows that correction, or at least significant correction of facial

asymmetries, forehead bossing, and ear misalignment in addition to

flatness at the back of the head CAN be achieved through banding. I

urge you to take a look at some of the photos that group members

have been willing to share! At 4 months of age, your daughter is at

the very young end of the spectrum of the age that babies can get

helmeted or banded, and should receive maximum correction if you

pursue this treatment.

There is also a treatment of aggressive repositioning, which we were

able to use to correct our daughter Remy's plagio/brachy, but tort

will seriously undermine repo efforts, so I don't believe that will

be a treatment option for you.

We also have some DATABASES that may be of interest to you. There

is a HELMET/BAND DATABASE listed in the DATABASE section of the

group, which lists orthoses providers by location. Just off the top

of my head, I know the Clarren Helmet is available in Seattle, and I

also read a recent post of a STARband being available in that area

as well, I think. We have some new members just beginning treatment

in the Clarren, but I'm wondering if they went to Children's

Hospital as well, and were referred for helmet therapy. Sometimes

group members have had to travel some large distances to get

helmets/bands, so you may want to look at some nearby states as well.

Parents can get a prescription for a helmet/band from their

pediatrician, plastic surgeon, or ped neuro. Even though we ended

up not using a helmet, we did go through the initial stages of

considering one. In fact, I had to strong-arm the ped neuro a bit

to get the prescription, since he wasn't a big fan of orthotic

treatment. It was disappointing. Other parents have had to change

peds, as you may be looking to do. I hope that our members from the

Seattle Area will post with some doctor suggestions!

We have compiled a lot of information, especially in the FILES and

LINKS section which you may find of help.

Would you keep us posted on how your daughter's situation is coming

along? Please let us know if you have any other questions or

concerns, we are here to help!

Take care,

Christie (Mom to Repo'd Remy)

> Our daughter, Nyah, just turned four months old last week. About

a

> month ago, she was diagnosed with a condition called Torticollis.

> In her case, she prefers turning to her left side. The condition

is

> fairly easy to treat and we are working with a physical therapist

to

> resolve this issue. The real problem is that from sleeping on the

> left side of her head/face almost exclusively for the first three

> months of her life, she has developed a problem called

> Plagiocephaly. This is where her head starts to flatten and her

> face becomes asymmetrical.

>

> We are doing everything possible to stop this from continuing but

> unfortunately damage has already been done. It came as quite a

> shock to us to learn that although we can improve her appearance

she

> will forever be somewhat asymmetrical (deformed).

>

> I would appreciate any help you might be able to provide us. We

are

> specifically looking for a doctor in the Seattle/Tacoma Washington

> area (craniofacial specialist; pediatrician) who has had good

> results in working with children that have this problem. We have

> been to Children's Hospital in Seattle and were not satisfied with

> the " she will probably look better once she gets older " approach.

>

> Any advice you can offer or assistance in helping us find a doctor

> for her would be greatly appreciated. Thank you.

[Guest guest]

Hi...I live in Woodinville and am going through the same issues with

my son. He is nine months now and has been to Children's and has

been wearing the helmet for a little over two months. If you would

like you can email me directly with all your questions. You may

also want to look at the photos posted - the results are amazing and

the children are BEAUTIFUL!!!

I look forward to hearing from you!

email: kheyes@...

Kathy ('s mom)

> Our daughter, Nyah, just turned four months old last week. About

a

> month ago, she was diagnosed with a condition called Torticollis.

> In her case, she prefers turning to her left side. The condition

is

> fairly easy to treat and we are working with a physical therapist

to

> resolve this issue. The real problem is that from sleeping on the

> left side of her head/face almost exclusively for the first three

> months of her life, she has developed a problem called

> Plagiocephaly. This is where her head starts to flatten and her

> face becomes asymmetrical.

>

> We are doing everything possible to stop this from continuing but

> unfortunately damage has already been done. It came as quite a

> shock to us to learn that although we can improve her appearance

she

> will forever be somewhat asymmetrical (deformed).

>

> I would appreciate any help you might be able to provide us. We

are

> specifically looking for a doctor in the Seattle/Tacoma Washington

> area (craniofacial specialist; pediatrician) who has had good

> results in working with children that have this problem. We have

> been to Children's Hospital in Seattle and were not satisfied with

> the " she will probably look better once she gets older " approach.

>

> Any advice you can offer or assistance in helping us find a doctor

> for her would be greatly appreciated. Thank you.

[Guest guest]

Hi,

We are in Federal Way and just started the helmet from Children's

Hospital a week ago. I'd be happy to tell you more about our

experience. We've had a great one there and also with our

pediatrician's encouragement in getting the helmet. Our son has

the exact same issues as your daughter. Now is definitely the time

to be looking into the helmet as Children's starts them around 6

months.

- and Greg

> Our daughter, Nyah, just turned four months old last week. About

a

> month ago, she was diagnosed with a condition called Torticollis.

> In her case, she prefers turning to her left side. The condition

is

> fairly easy to treat and we are working with a physical therapist

to

> resolve this issue. The real problem is that from sleeping on the

> left side of her head/face almost exclusively for the first three

> months of her life, she has developed a problem called

> Plagiocephaly. This is where her head starts to flatten and her

> face becomes asymmetrical.

>

> We are doing everything possible to stop this from continuing but

> unfortunately damage has already been done. It came as quite a

> shock to us to learn that although we can improve her appearance

she

> will forever be somewhat asymmetrical (deformed).

>

> I would appreciate any help you might be able to provide us. We

are

> specifically looking for a doctor in the Seattle/Tacoma Washington

> area (craniofacial specialist; pediatrician) who has had good

> results in working with children that have this problem. We have

> been to Children's Hospital in Seattle and were not satisfied with

> the " she will probably look better once she gets older " approach.

>

> Any advice you can offer or assistance in helping us find a doctor

> for her would be greatly appreciated. Thank you.

[Guest guest]

Thanks to all for your kind words.

My wife and I were not impressed with the doctors we met at

Children's Hospital in Seattle. Our daughter apparently has a

somewhat minor case of Plagiocephaly and we're primarily concerned

with the symmetry of her face. They told us they use the Clarren

helmet (http://www.orthomerica.com/products/cranial/clarren.htm) and

that it would not help her problem areas (her cheek, eyes, forehead,

and ears are out of alignment), but that it might round out the back

of her head.

I'm looking for a variety of feedback:

1. Does anyone know of another hospital/clinic/specialist in the

northwest we can try?

2. What's the consensus on Clarren helmets or " Star Family

Products " ? Are they good, are they the best, etc. What makes

them better/worse than alternatives?

Thanks again,

Dave

> > Our daughter, Nyah, just turned four months old last week.

About

> a

> > month ago, she was diagnosed with a condition called

Torticollis.

> > In her case, she prefers turning to her left side. The

condition

> is

> > fairly easy to treat and we are working with a physical

therapist

> to

> > resolve this issue. The real problem is that from sleeping on

the

> > left side of her head/face almost exclusively for the first

three

> > months of her life, she has developed a problem called

> > Plagiocephaly. This is where her head starts to flatten and her

> > face becomes asymmetrical.

> >

> > We are doing everything possible to stop this from continuing

but

> > unfortunately damage has already been done. It came as quite a

> > shock to us to learn that although we can improve her appearance

> she

> > will forever be somewhat asymmetrical (deformed).

> >

> > I would appreciate any help you might be able to provide us. We

> are

> > specifically looking for a doctor in the Seattle/Tacoma

Washington

> > area (craniofacial specialist; pediatrician) who has had good

> > results in working with children that have this problem. We

have

> > been to Children's Hospital in Seattle and were not satisfied

with

> > the " she will probably look better once she gets older "

approach.

> >

> > Any advice you can offer or assistance in helping us find a

doctor

> > for her would be greatly appreciated. Thank you.

[Guest guest]

Hi again,

I don't know of any other place in this area, but I'm sure there are

some. Have you asked your pediatrician for other referrals? What

area do you live in?

I did want to let you know about a family we know who has a son, now

almost 4 years old who wore the Clarren helmet and had some serious

problems with is forehead, etc. He looks absolutely normal now. If

you would like to contact his parents and ask any questions, let me

know.

I think the answer you will get about the Clarren helmet is that it

is a passive type of therapy. Basically, there is no added pressure

to any other area of the head and the flat spot can grow into the

helmet where needbe. I don't completely understand it myself, but I

like the fact that we don't have to go in constantly for adjustments.

-

> > > Our daughter, Nyah, just turned four months old last week.

> About

> > a

> > > month ago, she was diagnosed with a condition called

> Torticollis.

> > > In her case, she prefers turning to her left side. The

> condition

> > is

> > > fairly easy to treat and we are working with a physical

> therapist

> > to

> > > resolve this issue. The real problem is that from sleeping on

> the

> > > left side of her head/face almost exclusively for the first

> three

> > > months of her life, she has developed a problem called

> > > Plagiocephaly. This is where her head starts to flatten and

her

> > > face becomes asymmetrical.

> > >

> > > We are doing everything possible to stop this from continuing

> but

> > > unfortunately damage has already been done. It came as quite

a

> > > shock to us to learn that although we can improve her

appearance

> > she

> > > will forever be somewhat asymmetrical (deformed).

> > >

> > > I would appreciate any help you might be able to provide us.

We

> > are

> > > specifically looking for a doctor in the Seattle/Tacoma

> Washington

> > > area (craniofacial specialist; pediatrician) who has had good

> > > results in working with children that have this problem. We

> have

> > > been to Children's Hospital in Seattle and were not satisfied

> with

> > > the " she will probably look better once she gets older "

> approach.

> > >

> > > Any advice you can offer or assistance in helping us find a

> doctor

> > > for her would be greatly appreciated. Thank you.