Re: 5 month old daughter with flat head

[Guest guest]

Hi a good site to check out as a well as a consult with the

neurosurgeon is the cranial technologies web site.

http://www.cranialtech.com/about/index.html

They make the helmets for Plagio and are the leaders in that

field.

You described facial assemetry, that does get better with the

helmet therapy but not always 100%. The bones inside the head are

miss aligned so thats why the cheek eye is uneven. When the childs

head rounds out with re positioning(keep off the flat side) and maybe

a helmet you will see the assemtry start to disappear.

I would advise to check out all the links and imform educate

yourself and you can deal with this with a positive attitude. It can

get right on its own with time but the earlier you treat with the

helmets the better and quicker results are.

Good luck Lorraine.

Mom to Mackenzie 5/20/1999 (Doc grad).

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>

[Guest guest]

Prasad:

Hi and I'm so glad you found our discussion board. This group has

been of so much help to me over the past year already. I hope we can

help you as much as it has helped me.

From what you're describing of your daughter, the puffier cheek, eyes

being slightly different, ears misaligned, it definitely sounds like

plagiocephaly, but I'm so glad to hear you've already had a CT scan

to rule out cranio. You mentioned that she also had tight neck

muscles. Was she diagnosed with torticollis? Tort. is usually

resolved thru physical therapy. Torticollis is a leading cause in

plagiocephaly becuz it limits the baby's range of motion, preventing

her to turn her head into one direction. Therefore, keeps her on her

flat side, which can lead to a flat head. That's another reason I'm

guessing your daughter's condition is probably plagio..

Has your pediatrician even mentioned the use of " helmet therapy " to

possibly correct the flatness? If not, definitely check out the

Cranial Technologies link that Lorraine mentioned in her reply to

you. There are also a couple different products that can help

plagio, the STARband and a locally made helmet. It mostly depends on

where you live. Here's a link to the plagiocephaly home page, in it

you can find a TON of wonderful info regarding plagio, treatments,

repositioning, etc......http://www.plagiocephaly.org/support/before-

after.htm (oops, that's actually the link to the before & after

photos but click on home & go from there! sorry!).

Your daughter is also young enuf to possibly get some improvement

with repositioning. So you might wanna try that a bit.

Good luck with the CT scan results - PLEASE let us all know how they

come back. And keep us posted on Kaanthi

Debbie Abby's mom 3/1/00 DOCgrad 6/22/01

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>

[Guest guest]

Hello Prasad and welcome to the group! Your daughter is at a

wonderful age to be starting treatment if her CT scan is indicative

to plagio. The one thing I would definitely recommend you doing is

getting Kaanthi evauluated for torticollis. If she does have tort,

she will most likely need physical therapy or you will have to do

neck stretches with her. You should really check out the group

for tort that Marci referred you to. I would also recommend, if you

haven't done so yet, to try aggressive repositioning. Do whatever

you can to keep her off of her flat side. Put her toys to the left

of her, switch her around in the crib so that her head is where her

feet usually go and vice versa.

Until the results of the CT scan come back, its hard to say what your

next step should be. Like Marci said, if it is cranio, Kaanthi will

need surgery for it. If it is plagio, then there are a few different

devices that she could wear to help correct the flatness and

asymmetry. In addition to website for the DOCband that Lorraine gave

you, I'm going to give you the website for the makers of the

STARband. At this site you will hopefully be able to find an ortho

in your area that is experienced with making bands.

http://www.orthomerica.com

Regardless of which device you go with, the key to success is all in

the orthos/clinicians hands, if you have a good ortho, then you will

have good results. In the website that Debbie gave you

http://www.plagiocephaly.org/support you will find a list of sample

questions to ask your ortho/clinician.

Good luck to you and please keep us posted on the results of

Kaanthi's CT scans.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>

[Guest guest]

>

>>

>> Hello,

>>

>> I am resident of Irvine, CA and my 5-month-old

>> daughter has flat head to her right.

Hello!

As others have recommended, you should have your daughter seen by specialist.

Dr. Greene, a neurosurgeon in Orange is close.

Clarence Greene, Jr. M.D.

UCI Medical Center

101 The City Drive South

Orange CA 92688

714-771-5079

And there are a number of other very good physicians in San Diego.

Other DOC band providers are listed at

http://www.cranialtech.com/clinic/ca2.html

and of course, please check

http://www.plagiocephaly.org/ppcs-location.asp

for specialists in your area.

>

Regards,

<!--

M. , Ph.D.

www.Webworks.com

www.Public-Health.UIowa.edu!

www.Plagiocephaly.org

-->

[Guest guest]

Prasad,

I am so pleased to hear that you have some appointments set and have been

able to get things moving. This group was an outstanding source of answers

and support when I was going through this with my daughter!

Let us know how your appointments go!

Marci (Mom to )

Oklahoma

[Guest guest]

Thanks everyone for all the valuable inputs. I did fix up an

appointment with Dr.Clarance Greene of Children's Hospital of

Orange County. Also I have an appointment with our pediatrician.

I will talk to him about pt for torti.

Will keep everyone posted. Thanks once again

Prasad

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>

[Guest guest]

Marci wrote:

>

>

>

>Just wanted to chime in and say THANKS once again for being a GREAT resource

>to this board. I appreciate you!!

>

Thanks Marci!

I appreciate your comments! Thank you for your contributions to the list. This

is a great list! I really enjoy being involved.

Before I forget again... I've added a pdf file of a report in the Des Moines

(Iowa -- my home state) Register at

http://www.plagiocephaly.org/resources/news.htm.

EVERYONE, please let me know if you have any news.

Regards,

[Guest guest]

Prassad,

I live in Southern California as well. My daughter is currently being

treated at Loma Childrens Hospital, in their Craneo Facial

Department.

I think you are following the correct course. The ct scan will

determine whether it is cranio or plagio. I have to tell you that I

got very valuable information from all of the people here on this

board when I started posting here about 3 months ago. I had never

heard of plagio or cranio before my daughter was diagnosed with it.

My daughter was diagnosed with moderate bracheocephaly which is a

flat head in the back, which makes the head shorter and wider. She

has been in her helmet for 1 1/2 months and is already over 1/2 way

done. My daughter is now 9 mos old.

Feel free to e-mail me at cathyca25@... if you have any

questions. Loma Childrens Hospital has a unit specially equiped

to diagnose and deal with plagio and cranio.

Please let us know what your daughter's ct scan ends up showing.

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>

[Guest guest]

Prasad,

It appears you have already received a lot of great advice. Should

Kaanthi ultimately need a band (helmet) that is a DOC band, I wanted

to let you know about Cranial Therapies in Burbank, CA. THEY ARE

GREAT!

As you make already know from the web site

http://www.cranialtech.com/, Cranial Technologies has offices in San

Diego and Burbank CA. Should Kaanthi's circumstances require

this treatment I can recommend this company. The orthotist in

Burbank is Bitting. He is terrific. He is passionate about his

work and specializes EXCLUSIVELY in pediatric Craniofacial orthosis.

Our insurance directed us to another provider who in addition to his

normal practice (artificial legs and the like) also did these

pediatric helmets. I'm sure he is a sincere fellow but his

qualifications paled in comparison with at Cranial Therapies.

The point is that the skill and experience of the orthotist is KEY.

Best of luck and warm regards.

Kim – Mom of Noah (gets his DOC band next Thursday)

>

> Hello,

>

> I am resident of Irvine, CA and my 5-month-old

> daughter has flat head to her right. At the time of

> her birth we noticed that there was difference between

> her right jaw and the left jaw. Later after few weeks

> we noticed that her left ear and eye were slightly

> smaller than the right. Also range of neck motion was

> restricted. Then we consulted our pediatrician and he

> thought it could be hemi-atrophy or hemi hypertrophy.

> So we were told to consult a geneticist and an

> ophthalmologist.

>

> Our ophthalmologist suspected this to be Micronesia

> but geneticist at UCI (Univ. of California, Irvine)

> hospital said this is either plagio or cranio and

> ordered for CT scan. We are done with CT yesterday and

> are expecting the results in a week's time.

>

> It is very difficult to get an appointment with

> geneticist and we had to wait for nearly 3 months for

> this whole process.

>

> We had a follow up appointment with the

> ophthalmologist and she mentioned that this may not be

> Micronesia and most likely this is plagio or cranio.

> She said the baby's optic nerves look fine.

>

> The symptoms themselves have changed in the due course

> of time. Right now her back right side of the head is

> flat. There is a minute size difference in her eyes.

> There is some misalignment in the ears and size of ear

> lobes is slightly different. Her right cheek is more

> prominent then her left. Her neck range of motion has

> improved greatly. She can sleep on both sides with

> ease unlike in the past.

>

> Now that we are expecting our CT results I would like

> to know as of what the next step should be. We lost

> lot of valuable time because of lack of correct

> diagnosis and waiting for the appointments. So I

> request the member community to help me identify the

> next course of action.

>

> Also I would appreciate if someone can suggest a good

> neurosurgeon in Orange County, CA area.

>

> I joined this use group yesterday and it is really of

> great help.

>

> Thanks much.

>

> Prasad (dad) Kaanthi (daughter)

>

>

> __________________________________________________

>