New Member

[Guest guest]

Hi ! My name is Jess. My 1 year old son is in the

STARband. We are VERY happy with his progress. You are going to

here differing sides to both devices. It all depends on the

orthotist that you deal with. They are both basically the same.

Just DOC has been doing it longer.

Jess (Mom to Bryce)

> Hi,

>

> My name is . My son Gavin is 6 1/2 mo. and we just this

week

> found out about plagio. We expressed concern about the left side

of

> his head being flat and angled and through the 2 and 4 mo. appts.

> were told it would straighten out. Recently my sister who just

> started working at USA Baby memtioned that she has seen several

> customers' babies wearing helmets. So last week at his 6 mo appt I

> asked the doctor and he didn't know much or even give it a name but

> said that he'd had one patient who had used it and was pleased with

> the result. He had his nurse give me the name of the rehab place

to

> call. I finally got on Internet, started typing things like flat

> head and skull abnormalitiies and lo and behold there is an actual

> name for the condition and it really can cause problems. Now I

feel

> guilty that I didn't question it more sooner. We have an appt for

> Tuesday with a rehab center that goes through STARBand. Now

getting

> on this site this morning and reading a few postings I'm having

> second thoughts. Have many people been pleased with the STARBand

or

> have many run into problems? It seems that no one has had problems

> with DOC bands, is that true? Also, a new thought came to my

husband

> and me this morning. When Gavin is on his back his neck is flat to

> the floor. It would seem to me that the lack of the arch and

> resulting positioning of the head could cause spinal problems. Has

> anyone on the list addressed this before? WE are thinking of

> cancelling the Tuesday Appt. and looking into the DOC band and

trying

> to get in to see a chiropractor. If our thoughts are correct a

> chiropractor could provide convincing evidence to the insurance

> company. However, with Gavin being nearly 7 mo. we want to start

> SOON and are thinking of forgoing the whole insurance hassle and

> paying out-of-pocket. NOT that we're well-off mind you--we're both

> teachers--but we do have some savings and want to get going on this

> ASAP. I feel that we're against the clock in trying to get the

best

> results.

>

> All input regarding STARBand vs. DOC and potential spinal problems

is

> very, very welcome. Thanks--I'm so glad I found this group. Thank

> God for Internet!

>

> Glandt

> Grren Bay, WI

[Guest guest]

Hi jennifer,

join Torticolliskids at too and you will get all your

questions answered. (Torticollis causes Plagio). Also go to

CAPPS200.org.

We are Doc grads and were very happy with CT.

Lorraine Sonntag.

> Hi,

>

> My name is . My son Gavin is 6 1/2 mo. and we just this

week

> found out about plagio. We expressed concern about the left side

of

> his head being flat and angled and through the 2 and 4 mo. appts.

> were told it would straighten out. Recently my sister who just

> started working at USA Baby memtioned that she has seen several

> customers' babies wearing helmets. So last week at his 6 mo appt I

> asked the doctor and he didn't know much or even give it a name but

> said that he'd had one patient who had used it and was pleased with

> the result. He had his nurse give me the name of the rehab place

to

> call. I finally got on Internet, started typing things like flat

> head and skull abnormalitiies and lo and behold there is an actual

> name for the condition and it really can cause problems. Now I

feel

> guilty that I didn't question it more sooner. We have an appt for

> Tuesday with a rehab center that goes through STARBand. Now

getting

> on this site this morning and reading a few postings I'm having

> second thoughts. Have many people been pleased with the STARBand

or

> have many run into problems? It seems that no one has had problems

> with DOC bands, is that true? Also, a new thought came to my

husband

> and me this morning. When Gavin is on his back his neck is flat to

> the floor. It would seem to me that the lack of the arch and

> resulting positioning of the head could cause spinal problems. Has

> anyone on the list addressed this before? WE are thinking of

> cancelling the Tuesday Appt. and looking into the DOC band and

trying

> to get in to see a chiropractor. If our thoughts are correct a

> chiropractor could provide convincing evidence to the insurance

> company. However, with Gavin being nearly 7 mo. we want to start

> SOON and are thinking of forgoing the whole insurance hassle and

> paying out-of-pocket. NOT that we're well-off mind you--we're both

> teachers--but we do have some savings and want to get going on this

> ASAP. I feel that we're against the clock in trying to get the

best

> results.

>

> All input regarding STARBand vs. DOC and potential spinal problems

is

> very, very welcome. Thanks--I'm so glad I found this group. Thank

> God for Internet!

>

> Glandt

> Grren Bay, WI

[Guest guest]

,

You are going to eceive a lot of responses! Don't let your head spin! First

off, a lot of eople have had good results with the Starband, results truly

seem to be determined by the amount of the orthotist casting and treating

your child. We have a DOC band and are thrilled with progress at 7 weeks; my

son was banded at 10 1/2 months. Check out Cranialtech's website; they have

offices in Chicago (I don't remember how far Green Bay is though)

As far as the chiroprator is concerned, I don't know how much he will be able

to help you. I had never been to one in my life until my little guy had 4

bouts of otitis media in 10 weeks. We think he may have had torticollis (my

two peds differed in opinion) and I thought maybe the chiropractor could

help. Coincidence or not the ear infections stopped. Unfortunatly, I have

to cut this short as Corey is screaming and Daddy won't do at this point.

Good luck, you'll find great info here. It wouldn't hurt to see what the

clinic who makes the Starband has to say; gather as much research as possible

and question how experienced they are in treating babies with the band.

, Corey's mommy (DOC banded 5/4/01)

Metuchen, NJ

glandtcj@... wrote:

> Hi,

>

> My name is . My son Gavin is 6 1/2 mo. and we just this week

> found out about plagio. We expressed concern about the left side of

> his head being flat and angled and through the 2 and 4 mo. appts.

> were told it would straighten out. Recently my sister who just

> started working at USA Baby memtioned that she has seen several

> customers' babies wearing helmets. So last week at his 6 mo appt I

> asked the doctor and he didn't know much or even give it a name but

> said that he'd had one patient who had used it and was pleased with

> the result. He had his nurse give me the name of the rehab place to

> call. I finally got on Internet, started typing things like flat

> head and skull abnormalitiies and lo and behold there is an actual

> name for the condition and it really can cause problems. Now I feel

> guilty that I didn't question it more sooner. We have an appt for

> Tuesday with a rehab center that goes through STARBand. Now getting

> on this site this morning and reading a few postings I'm having

> second thoughts. Have many people been pleased with the STARBand or

> have many run into problems? It seems that no one has had problems

> with DOC bands, is that true? Also, a new thought came to my husband

> and me this morning. When Gavin is on his back his neck is flat to

> the floor. It would seem to me that the lack of the arch and

> resulting positioning of the head could cause spinal problems. Has

> anyone on the list addressed this before? WE are thinking of

> cancelling the Tuesday Appt. and looking into the DOC band and trying

> to get in to see a chiropractor. If our thoughts are correct a

> chiropractor could provide convincing evidence to the insurance

> company. However, with Gavin being nearly 7 mo. we want to start

> SOON and are thinking of forgoing the whole insurance hassle and

> paying out-of-pocket. NOT that we're well-off mind you--we're both

> teachers--but we do have some savings and want to get going on this

> ASAP. I feel that we're against the clock in trying to get the best

> results.

>

> All input regarding STARBand vs. DOC and potential spinal problems is

> very, very welcome. Thanks--I'm so glad I found this group. Thank

> God for Internet!

>

> Glandt

> Grren Bay, WI

>

> For more plagio info

[Guest guest]

Hi ,

My name is Niki, and both of my twins wear the STARbands. While it

is true that some parents have had problems with the STAR, that has

not been the case with us, we are extremely satisfied with our

results! But it is also true that some parents have had trouble with

the DOC. The success of either product relies totally on the

orthotist and his/her experience.

It really wouldn't hurt to interview an ortho for both STAR and DOC,

and then take it from there and go with who you feel most comfortable

with.

I have never dealt with a chiropractor nor had any spinal problems

with either twin, so I wouldn't be able to give you an opinion on

using a chiro.

Keep us updated on what you decide! I hope you stick around here.

The parents here are some of the nicest people I've ever 'met'! Try

and join on Tuesday nights chat sometime. Questions get answered and

we have some good laughs too! I wish you the best of luck!

Niki

Kaylie & Danny (STARband 4.5.01)

Phila., PA

> Hi,

>

> My name is . My son Gavin is 6 1/2 mo. and we just this

week

> found out about plagio. We expressed concern about the left side

of

> his head being flat and angled and through the 2 and 4 mo. appts.

> were told it would straighten out. Recently my sister who just

> started working at USA Baby memtioned that she has seen several

> customers' babies wearing helmets. So last week at his 6 mo appt I

> asked the doctor and he didn't know much or even give it a name but

> said that he'd had one patient who had used it and was pleased with

> the result. He had his nurse give me the name of the rehab place

to

> call. I finally got on Internet, started typing things like flat

> head and skull abnormalitiies and lo and behold there is an actual

> name for the condition and it really can cause problems. Now I

feel

> guilty that I didn't question it more sooner. We have an appt for

> Tuesday with a rehab center that goes through STARBand. Now

getting

> on this site this morning and reading a few postings I'm having

> second thoughts. Have many people been pleased with the STARBand

or

> have many run into problems? It seems that no one has had problems

> with DOC bands, is that true? Also, a new thought came to my

husband

> and me this morning. When Gavin is on his back his neck is flat to

> the floor. It would seem to me that the lack of the arch and

> resulting positioning of the head could cause spinal problems. Has

> anyone on the list addressed this before? WE are thinking of

> cancelling the Tuesday Appt. and looking into the DOC band and

trying

> to get in to see a chiropractor. If our thoughts are correct a

> chiropractor could provide convincing evidence to the insurance

> company. However, with Gavin being nearly 7 mo. we want to start

> SOON and are thinking of forgoing the whole insurance hassle and

> paying out-of-pocket. NOT that we're well-off mind you--we're both

> teachers--but we do have some savings and want to get going on this

> ASAP. I feel that we're against the clock in trying to get the

best

> results.

>

> All input regarding STARBand vs. DOC and potential spinal problems

is

> very, very welcome. Thanks--I'm so glad I found this group. Thank

> God for Internet!

>

> Glandt

> Grren Bay, WI

[Guest guest]

Hi

I am a new member also and live in Milwaukee. Our

daughter is 7 months. I noticed a flat spot on her left

side at about 5 months and pointed it out to our ped at

her 6 month visit. He sent us to the DOC band clinic in

Mequon. My husband and I are still unsure about the band

and are starting PT with Kenna today-since she has some

neck tightening. We have an appointment on Friday with a

neurosurgeon at Children's Hospital.Repositioning has

worked so far and their is some growth on her left side.

, mom to Kenna

> Hi,

>

> My name is . My son Gavin is 6 1/2 mo. and we just this week

> found out about plagio. We expressed concern about the left side of

> his head being flat and angled and through the 2 and 4 mo. appts.

> were told it would straighten out. Recently my sister who just

> started working at USA Baby memtioned that she has seen several

> customers' babies wearing helmets. So last week at his 6 mo appt I

> asked the doctor and he didn't know much or even give it a name but

> said that he'd had one patient who had used it and was pleased with

> the result. He had his nurse give me the name of the rehab place to

> call. I finally got on Internet, started typing things like flat

> head and skull abnormalitiies and lo and behold there is an actual

> name for the condition and it really can cause problems. Now I feel

> guilty that I didn't question it more sooner. We have an appt for

> Tuesday with a rehab center that goes through STARBand. Now getting

> on this site this morning and reading a few postings I'm having

> second thoughts. Have many people been pleased with the STARBand or

> have many run into problems? It seems that no one has had problems

> with DOC bands, is that true? Also, a new thought came to my husband

> and me this morning. When Gavin is on his back his neck is flat to

> the floor. It would seem to me that the lack of the arch and

> resulting positioning of the head could cause spinal problems. Has

> anyone on the list addressed this before? WE are thinking of

> cancelling the Tuesday Appt. and looking into the DOC band and trying

> to get in to see a chiropractor. If our thoughts are correct a

> chiropractor could provide convincing evidence to the insurance

> company. However, with Gavin being nearly 7 mo. we want to start

> SOON and are thinking of forgoing the whole insurance hassle and

> paying out-of-pocket. NOT that we're well-off mind you--we're both

> teachers--but we do have some savings and want to get going on this

> ASAP. I feel that we're against the clock in trying to get the best

> results.

>

> All input regarding STARBand vs. DOC and potential spinal problems is

> very, very welcome. Thanks--I'm so glad I found this group. Thank

> God for Internet!

>

> Glandt

> Grren Bay, WI

>

>

> For more plagio info

[Guest guest]

Hi :

I too am a new member. I haven't even posted my info yet. I've been too

busy searching for information. I live in Kansas. My son started the STAR

band at 7 1/2 mos. He is doing terrific. I had a lot of concern about the

STAR band as are you, but I feel much better now. I read in one of the

recent posts something that really summed up the differences between

STARband and DOC band. It really is the difference between namebrand and

generic. I had a real struggle because there isn't a doctor in our city

that has done either bands. Our orthotist had recently been trained using

the STAR band. I was nervous but we went ahead and used the ortho in our

city. Our son has been in his helmet for 5 weeks now and I can see

improvement. Still nervous, I did some more calling around and low and

below I found someone that moved to our city 2 weeks ago that has been

working in Texas, she's an ortho, and has been trained and doing the DOC

band for almost 2 years. I went to have a consult with her because I

wanted her to take a look at my sons helmet and tell me if his helmet is

fitting properly and is working the way it's supposed to. I was relieved

to find out that everything looked exactly the way it should and that she

felt we would get an even better result than first anticipated. In fact,

she said that she will start using the STAR band here in town. She said

the only difference is that the STAR band comes up a little higher than the

DOC.

Let us know how your appointments go. Don't worry about the STAR band.

The bad things you might hear usually have more to do with the orthotist.

Good luck!

Tammy

-----Original Message-----

From: glandtcj@... [sMTP:glandtcj@...]

Sent: Saturday, June 23, 2001 12:32 PM

Plagiocephaly

Subject: new member

Hi,

My name is . My son Gavin is 6 1/2 mo. and we just this week

found out about plagio. We expressed concern about the left side of

his head being flat and angled and through the 2 and 4 mo. appts.

were told it would straighten out. Recently my sister who just

started working at USA Baby memtioned that she has seen several

customers' babies wearing helmets. So last week at his 6 mo appt I

asked the doctor and he didn't know much or even give it a name but

said that he'd had one patient who had used it and was pleased with

the result. He had his nurse give me the name of the rehab place to

call. I finally got on Internet, started typing things like flat

head and skull abnormalitiies and lo and behold there is an actual

name for the condition and it really can cause problems. Now I feel

guilty that I didn't question it more sooner. We have an appt for

Tuesday with a rehab center that goes through STARBand. Now getting

on this site this morning and reading a few postings I'm having

second thoughts. Have many people been pleased with the STARBand or

have many run into problems? It seems that no one has had problems

with DOC bands, is that true? Also, a new thought came to my husband

and me this morning. When Gavin is on his back his neck is flat to

the floor. It would seem to me that the lack of the arch and

resulting positioning of the head could cause spinal problems. Has

anyone on the list addressed this before? WE are thinking of

cancelling the Tuesday Appt. and looking into the DOC band and trying

to get in to see a chiropractor. If our thoughts are correct a

chiropractor could provide convincing evidence to the insurance

company. However, with Gavin being nearly 7 mo. we want to start

SOON and are thinking of forgoing the whole insurance hassle and

paying out-of-pocket. NOT that we're well-off mind you--we're both

teachers--but we do have some savings and want to get going on this

ASAP. I feel that we're against the clock in trying to get the best

results.

All input regarding STARBand vs. DOC and potential spinal problems is

very, very welcome. Thanks--I'm so glad I found this group. Thank

God for Internet!

Glandt

Grren Bay, WI

For more plagio info

[Guest guest]

-

Welcome to the group - I'm glad you found us!!

One of our moderators has used Angel Flight and I'm sure she will respond

with lots of good information for you. As far as the STARband goes, we have

lots of very satisfied STARband wearers in this group. The key is to

interview the orthotist and see what kind of experience he/she has had. Many

orthos are very skilled and experienced in treating babies with plagio with

the STARband. The main thing is to gather information about the person in

your area. If they are skilled and experienced you should have very good luck

with the STARband. The DOCband is excellent as well and we here very few

complaints here about it (although we have had a few).

Are you doing PT for the torticollis? There is another group called

torticolliskids that would be great if you are not already a member. Also,

you should check out plagiocephaly.org/support for information about plagio.

My neuro suggested the following possible side effects to untreated plagio:

TMJ, vision problems, speech and language delays, and developmental delays.

This is not to say that these things WOULD happen, they are just things that

one specialist suggested could happen.

8 months is not too late to start banding, but the sooner the better. The

growth spurts slow down the older they get and that is how you get

improvement when wearing the band or helmet.

I hope this information helps. This group is a great source of advice,

support and friendship - I hope you will stick with us!!

Marci (Mom to - helmet grad)

Oklahoma

[Guest guest]

,

I just had to reply to what you said about the STARband. My son is

proof that it works! His head is 80-90% improved after wearing his.

The STARband is only as good as the orthotist that you are going to.

Keep that in mind if there is somewhere nearby you that offers the

STARband. Like I said, it worked wonders for my son's head.

Jess (Mom to Bryce, STARband grad)

> Hi, I am just joining the group. My name is and my daughter,

> Avynn, is just turning 8 months old. She has right side

Torticollis

> and Plagio, however we have not been diagnosed with Plagio. I'm

> going to try to make an apppointment with a Ped Neurologist as well

> as an Eye Dr. to see if it is to the extent of needing a band. We

> live in Co however and the nearest DOC band site is in AZ. I

haven't

> heard good things about the STAR band, but I'm just now looking in

to

> it all. Has anyone used the Angle Flight program to fly to a site

> for the band? What are the reasons other than cosmetic issues for

> getting a band? My 23 month old has a flat head as well and I

> haven't noticed it harming him in any way, however, it doesn't

affect

> his facial symetry like Avynn's does.

>

> Any advise for where we should go from here is welcome.

>

> Thanks,

>

[Guest guest]

,

Welcome to the group. You have come to the right place for

information and support. I have never used angel flight but many

other families have. Did you check into locally made helmets? There

may be someone close to you that does them and then that would save

you the stress of the long drive. Some of the issues that can come

from Plagio are TMJ, Eye problems, and self esteem issues. Hope this

was of some help. Good luck and keep us posted.

April In Mass

Mommy to Bri and Mandy

> Hi, I am just joining the group. My name is and my daughter,

> Avynn, is just turning 8 months old. She has right side

Torticollis

> and Plagio, however we have not been diagnosed with Plagio. I'm

> going to try to make an apppointment with a Ped Neurologist as well

> as an Eye Dr. to see if it is to the extent of needing a band. We

> live in Co however and the nearest DOC band site is in AZ. I

haven't

> heard good things about the STAR band, but I'm just now looking in

to

> it all. Has anyone used the Angle Flight program to fly to a site

> for the band? What are the reasons other than cosmetic issues for

> getting a band? My 23 month old has a flat head as well and I

> haven't noticed it harming him in any way, however, it doesn't

affect

> his facial symetry like Avynn's does.

>

> Any advise for where we should go from here is welcome.

>

> Thanks,

>

[Guest guest]

Hi new member,

like you I dident see how bad my daughter assemetry was till

even later when we banded her and I saw the mould(headsickle). We

started the DOC at 13mths till 18mths last year. We got a 50%

improvement. Now she is 2 and her hair is growing in and shes so cute

only I and Dr's see it.You should get more improvement because you

started sooner than us.

Good Luck.

Lorraine Sonntag, Boca Raton Fl.Mackenzie's mom 05-20-99.

> I am a new member and mom to 10 1/2 month old . was an

> unexpected preemie (33 weeks). She was diagnosed with torticollis

at

> 4 months. We went to PT once, she gave me some stretches and we

> thought she was better and that her range of motion had improved.

At

> her 6 month check up her ped did not notice any facial assymetry or

> plagio. She is delayed in her gross motor skills and we started PT

> for that at 6 months. Unfortunately, we went to a PT that did not

> primarily work with infants (mostly older children and adults --

big

> mistake!). At her 9 month check up - her pediatrician was shocked

by

> her facial assymetry, said her torticollis was worse and said we

had

> to get her in a band and made the referral to the pediatric

> neurosurgeon. Has anyone else out there had this news sprung on

them

> and not noticed this about their own child? Of course, now I can

see

> what they are talking about it - but it is an awful feeling knowing

I

> should have noticed it and we wasted precious treatment time.

> We started with a new PT who is terrific - she is making great

> progress on her motor skills and we're working on the torticollis.

We

> had our appointment with the neurosurgeon last week and plan to

band

> her with the DOC band. We live in Charlotte, NC and there is a

> Cranial Technologies place here, so I guess we are lucky after

> reading all these e-mails about people that travel. We found out

> Friday from the Cranial tech insurance coordinator that our

insurance

> co. is notorious for not covering the DOC band. Now that we are

> probably looking at a $3000 expenditure, I am trying to do some

more

> research. Any testimonials from people with an older infant (

> will be 11 months+ by the time she actually gets it)? Did it help

> with the facial assymetry? Her forehead is pushed out on the right

> side and her cheek/face is fuller on that side. Any web sites with

> info about the facial assymetry corrections on older infants?

Thanks

> so much for any info. Sorry to be so long winded. I'm so glad I

> found this group.

[Guest guest]

Hello 's Mom and welcome to the group!

I think you will get some real good testimonials from people who started with

the DOCband at 12 months plus and had good results. My daughter started with

a locally made helmet at 9 months old and we had good results.

I'm am so sorry to hear about the unfortunate experience with your first PT,

but it sounds like you are on the right track now. Our story is slightly

different. We noticed the flatness at 4 months and mentioned it to our ped.

He dismissed our concern and told us it would round out on its own. By the

time her 7 month well-baby check, not only did she have flatness, but facial

assymetry as well! This time when we pointed it out to the ped he sent us to

a neurosurgeon and the rest is history! Thank goodness we pushed him when we

did! My only regret is that I trusted him at her 4 month check-up when he

said it would round out on its own!!! Grrrrrr! I really wish these peds would

get educated about this new " epidemic " . Sounds like your ped is really on the

ball and is trying to get the treatment she needs - that is great!

I would suggest checking out www.plagiocephaly.org/support for some GREAT

information about plagio. Also, check out the database and files sections of

our plagio homepage for some good information. Also, have you joined

torticolliskids? That is a group for parents of children with tort -

they might be able to offer some good support in that area as well!

Welcome - and good to have you with us. I think you will find this group to

be an outstanding source of advice, support and friendship. I hope you will

stick with us and share more of your story with us!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi,

Welcome to the group. My son was dx with tort at 2 months and has been going to therapy for about 4, with great improvement. A boy at pt was dx with tort at 9 months, and he's doing great also- also had the DOC band- that's how I found out about it- and I think he was done with it just after 12 months.

Don't feel bad about not spotting that facial asymmetry, you will find that lots of parents see it one day, and the next think, was I seeing things? The only way we really spotted the fullness of the cheek was in the mirror- the ear and eye were noticeably off(although we still had to convince people!).

I think you should go for the band, it has helped asymmetry 100%- however, the tight neck muscle, or tort, can also be causing the asymmetry by pulling the face down to meet it, as well as shifting the lower extremities upwards to meet it as well. I think massaging the face upwards has helped, as well as by massaging the ribcage downwards, has helped as well. has worn the band for almost 2 months and he will only need it for 3-4 more weeks, tops. I would never have believed how his ear has migrated to where it needs to be. I think you'll hear from other members that started before 12 months (and after!) with great improvement. Good luck! BTW- my ped never whole-heartedly recommended the band, but after I expressed my view and stated that daycare would not be aggressive on keeping him off the flat spot, she agreed with me. BUT, that was WAY after he was already in it and she noticed the improvement. She says they don't usually recommend going that route because the head will round out on its own. Good luck in whatever you do! Keep us posted!

' Mom

[Guest guest]

Hi there:

First of all, don't beat yourself up over not doing anything sooner.

11 mos is still young enuf to see good correction. Abby first wore

the STARband unsuccessfully for 3 mos (began at age 8 mos), we later

switched her into the DOCband - she rec'd that at age 11.5 mos., she

wore the band 4.5 mos and we rec'd 60% correction which I'm thrilled

with. Abby's plagio was severe. She also had forehead bossing,

which the band corrected 100%. She had very little facial

assymettry, nothing that's really noticeable unless you look for it.

Check out Abby's website for before & after photos. Good luck!

Debbie Abby's mom 3/1/00 STARband 11/4/00-1/26/01 DOCband 2/16/01-

6/22/01

http://www.fortheloveofmommy.com/AbbyGator.htm

> I am a new member and mom to 10 1/2 month old . was an

> unexpected preemie (33 weeks). She was diagnosed with torticollis

at

> 4 months. We went to PT once, she gave me some stretches and we

> thought she was better and that her range of motion had improved.

At

> her 6 month check up her ped did not notice any facial assymetry or

> plagio. She is delayed in her gross motor skills and we started PT

> for that at 6 months. Unfortunately, we went to a PT that did not

> primarily work with infants (mostly older children and adults --

big

> mistake!). At her 9 month check up - her pediatrician was shocked

by

> her facial assymetry, said her torticollis was worse and said we

had

> to get her in a band and made the referral to the pediatric

> neurosurgeon. Has anyone else out there had this news sprung on

them

> and not noticed this about their own child? Of course, now I can

see

> what they are talking about it - but it is an awful feeling knowing

I

> should have noticed it and we wasted precious treatment time.

> We started with a new PT who is terrific - she is making great

> progress on her motor skills and we're working on the torticollis.

We

> had our appointment with the neurosurgeon last week and plan to

band

> her with the DOC band. We live in Charlotte, NC and there is a

> Cranial Technologies place here, so I guess we are lucky after

> reading all these e-mails about people that travel. We found out

> Friday from the Cranial tech insurance coordinator that our

insurance

> co. is notorious for not covering the DOC band. Now that we are

> probably looking at a $3000 expenditure, I am trying to do some

more

> research. Any testimonials from people with an older infant (

> will be 11 months+ by the time she actually gets it)? Did it help

> with the facial assymetry? Her forehead is pushed out on the right

> side and her cheek/face is fuller on that side. Any web sites with

> info about the facial assymetry corrections on older infants?

Thanks

> so much for any info. Sorry to be so long winded. I'm so glad I

> found this group.

[Guest guest]

Hi 's mom,

Welcome to the group. This is a wonderful place to

get answers to your questions and support from parents

who are dealing or have dealt with many of the issues

that you are going through. I would have been lost

without the support of this group.

I also live in Charlotte. My daughter has been

" banded " since February (6.5 months) and we are

starting to see the light at the end of the tunnel.

also has a mild case of tort and we had a few

sessions of PT with Carla. She is wonderful, is this

who you are seeing now?

Good luck to you and please let me know if I can

answer any questions.

B., Charlotte

--- randallsnelson@... wrote:

> I am a new member and mom to 10 1/2 month old .

> was an

> unexpected preemie (33 weeks). She was diagnosed

> with torticollis at

> 4 months. We went to PT once, she gave me some

> stretches and we

> thought she was better and that her range of motion

> had improved. At

> her 6 month check up her ped did not notice any

> facial assymetry or

> plagio. She is delayed in her gross motor skills

> and we started PT

> for that at 6 months. Unfortunately, we went to a

> PT that did not

> primarily work with infants (mostly older children

> and adults -- big

> mistake!). At her 9 month check up - her

> pediatrician was shocked by

> her facial assymetry, said her torticollis was worse

> and said we had

> to get her in a band and made the referral to the

> pediatric

> neurosurgeon. Has anyone else out there had this

> news sprung on them

> and not noticed this about their own child? Of

> course, now I can see

> what they are talking about it - but it is an awful

> feeling knowing I

> should have noticed it and we wasted precious

> treatment time.

> We started with a new PT who is terrific - she is

> making great

> progress on her motor skills and we're working on

> the torticollis. We

> had our appointment with the neurosurgeon last week

> and plan to band

> her with the DOC band. We live in Charlotte, NC and

> there is a

> Cranial Technologies place here, so I guess we are

> lucky after

> reading all these e-mails about people that travel.

> We found out

> Friday from the Cranial tech insurance coordinator

> that our insurance

> co. is notorious for not covering the DOC band. Now

> that we are

> probably looking at a $3000 expenditure, I am trying

> to do some more

> research. Any testimonials from people with an

> older infant (

> will be 11 months+ by the time she actually gets

> it)? Did it help

> with the facial assymetry? Her forehead is pushed

> out on the right

> side and her cheek/face is fuller on that side. Any

> web sites with

> info about the facial assymetry corrections on older

> infants? Thanks

> so much for any info. Sorry to be so long winded.

> I'm so glad I

> found this group.

>

>

__________________________________________________

[Guest guest]

Hi 's mom,

i know you've probably already received quite a few responses, so I will make

this short. My son received his DOC band at 10 1/2 months, he's been wearing

12 weeks and his forehead is evening out, his cheeks are close to being

symmetrical, and the flatness on the back right of his head is really

starting to fill in. Oh, and his ears have shifted slightly, one was a good

inch farther back on his head than the other. I don't think 11 months is too

old to start; I know every child is different and results will vary but I

think it's worth the chance.

Good luck.

, Corey's mommy (DOC banded 5/4/01)

randallsnelson@... wrote:

> I am a new member and mom to 10 1/2 month old . was an

> unexpected preemie (33 weeks). She was diagnosed with torticollis at

> 4 months. We went to PT once, she gave me some stretches and we

> thought she was better and that her range of motion had improved. At

> her 6 month check up her ped did not notice any facial assymetry or

> plagio. She is delayed in her gross motor skills and we started PT

> for that at 6 months. Unfortunately, we went to a PT that did not

> primarily work with infants (mostly older children and adults -- big

> mistake!). At her 9 month check up - her pediatrician was shocked by

> her facial assymetry, said her torticollis was worse and said we had

> to get her in a band and made the referral to the pediatric

> neurosurgeon. Has anyone else out there had this news sprung on them

> and not noticed this about their own child? Of course, now I can see

> what they are talking about it - but it is an awful feeling knowing I

> should have noticed it and we wasted precious treatment time.

> We started with a new PT who is terrific - she is making great

> progress on her motor skills and we're working on the torticollis. We

> had our appointment with the neurosurgeon last week and plan to band

> her with the DOC band. We live in Charlotte, NC and there is a

> Cranial Technologies place here, so I guess we are lucky after

> reading all these e-mails about people that travel. We found out

> Friday from the Cranial tech insurance coordinator that our insurance

> co. is notorious for not covering the DOC band. Now that we are

> probably looking at a $3000 expenditure, I am trying to do some more

> research. Any testimonials from people with an older infant (

> will be 11 months+ by the time she actually gets it)? Did it help

> with the facial assymetry? Her forehead is pushed out on the right

> side and her cheek/face is fuller on that side. Any web sites with

> info about the facial assymetry corrections on older infants? Thanks

> so much for any info. Sorry to be so long winded. I'm so glad I

> found this group.

>

>

> For more plagio info

[Guest guest]

Welcome lesliev and hi,

had to say hi because your son's name is my brother sister in

llaw's son's name. I've never heard it before or since him. They live

in Blackpool England. I live in Fl USA. I have a 27month old with

Plagio thats doing real good. We did the Doc late and had moderate

improvement. Only I notice the Plagio now especially when her heads

wet. I also have a 4 yr old without Plagio.

> HI Everybody

>

> My name is Lesley and I am Mum to 3 year old Aidan who is the light

> of my life (most of the time!).This internet lark is new to me and

I

> stumbled on your site only recently.I joined your group immediately

> for the following reasons.

> When Aidan was 8 weeks old I noticed a flat area at the back of his

> head becoming worse.I mentioned this to my GP who happily informed

me

> that the bones of a baby's head are soft and not to worry!Mothers

> instinct or something but I was not happy.At 12 weeks old it was

> obvious that his head was not " normal " and it was discovered that

he

> had a sterno-mastoid tumour which was preventing him from turning

his

> head.Treatment we found was daily phisiotherapy (not nice) which

> contined until he reached about 2 years.

> Despite the fact that the physio appeared to be working and he

could

> move his head freely, his head shape appeared to be getting worse

and

> I don't need to explain to the group how this made me feel.

> Anyway, the outcome of Aidan's story is that following an MRI scan

to

> rule out cranio.,he was discharged from the clinic with very little

> information of how this condition may affect him in the future.

> He is now a very happy,clever,georgeous 3 year old but with a flat

> head at the back right.He has maybe perhaps mild facial asymmetry

> that no-one else seems to notice except me.

> We live in Scotland, a place where it seems not a lot is known

about

> the condition never mind treatment with the Doc bands.

> I'd just like to say that this website is extremely helpful and has

> made me feel a bit happier about Aidan's condition.

> Simon from Adelaide's recent message cheered me up a great deal ,

as

> the story about his daughter just seemed to sum up our son's

> situation, despite the fact that his plagio.was left untreated

> through no choice of our own!!

> Sorry to go on so, but I feel better now!

>

> Thanks again

> Lesley (Aidan's Mum)

[Guest guest]

Hi ,

Welcome to the group. It is sad that so many doctors are unaware of Plagio as a

Medical condition. There are so many doctors who think it is a "cosmetic" problem.

I am also sorry that your son did not recieve any treayment for his head shape.

The good thing is that from the sounds of it, Your son is doing just fine. It is good to hear.

I look forward to reading your future posts.

Anne

Mom of Livia(10 months)

Canada

[Guest guest]

Hi Lesley,

I'm glad you found our group and thank you for sharing your story with us. It

is unfortunate that more information is not available worldwide on this

condition. It sounds like your little Aiden is just fine and growing up

normally despite the plagiocephaly. My five year old stepson has slight

flatness on one side of his and some very, very mild facial assymetry

(really, I'm the only one who really notices it!) He is a perfectly normal

five year old and is sharp as a tack.

Again, welcome to our group - it is good to have you among us. What part of

Scotland are you from? I toured Englad, Scotland and Wales about 5 years ago

with my church choir and Scotland was hands down my favorite stop along the

way.

Marci (Mom to )

Oklahoma

[Guest guest]

Welcome to the group :

I am glad you have found our group to be helpful & has made you feel

more comfortable with Aidan's flatness. That's what this group does,

makes us feel good about the decisions we've mad & supports each

other.

Scotland, unfortunately, isn't the only country that is uneducated on

plagiocephaly. Even though there are so many clinics now who have

the DOCband, STARband or locally made helmets, SO many physicians are

still so hesitate to diagnose this problem and especially to

prescribe a band or helmet. Most of us have heard " oh, don't worry,

it'll round out on it's own over time " and " once he/she gets hair,

you won't notice it a bit! " . That's pretty common.

I'm willing to bet though, that unless you already know Aidan is a

little flat, noone else would notice.

My daughter had severe plagio, we rec'd the DOCband when she was

nearly 1, rec'd 60% correction, but she's still somewhat flat, she's

definitely far from a round noggin. But I'm thrilled with the

improvement we rec'd, even though she is still flat, it's better. I

don't worry about it any longer. She's still beautiful, flat head

and all, as I'm sure Aidan is still handsome!!!!!!!

Hang around the board for more usefull information!!!

Debbie Abby's mom

Michigan USA

My name is Lesley and I am Mum to 3 year old Aidan who is the light

> of my life (most of the time!).This internet lark is new to me and

I

> stumbled on your site only recently.I joined your group immediately

> for the following reasons.

> When Aidan was 8 weeks old I noticed a flat area at the back of his

> head becoming worse.I mentioned this to my GP who happily informed

me

> that the bones of a baby's head are soft and not to worry!Mothers

> instinct or something but I was not happy.At 12 weeks old it was

> obvious that his head was not " normal " and it was discovered that

he

> had a sterno-mastoid tumour which was preventing him from turning

his

> head.Treatment we found was daily phisiotherapy (not nice) which

> contined until he reached about 2 years.

> Despite the fact that the physio appeared to be working and he

could

> move his head freely, his head shape appeared to be getting worse

and

> I don't need to explain to the group how this made me feel.

> Anyway, the outcome of Aidan's story is that following an MRI scan

to

> rule out cranio.,he was discharged from the clinic with very little

> information of how this condition may affect him in the future.

> He is now a very happy,clever,georgeous 3 year old but with a flat

> head at the back right.He has maybe perhaps mild facial asymmetry

> that no-one else seems to notice except me.

> We live in Scotland, a place where it seems not a lot is known

about

> the condition never mind treatment with the Doc bands.

> I'd just like to say that this website is extremely helpful and has

> made me feel a bit happier about Aidan's condition.

> Simon from Adelaide's recent message cheered me up a great deal ,

as

> the story about his daughter just seemed to sum up our son's

> situation, despite the fact that his plagio.was left untreated

> through no choice of our own!!

> Sorry to go on so, but I feel better now!

>

> Thanks again

> Lesley (Aidan's Mum)

[Guest guest]

Hi Lesley and welcome to the group!! I'm so glad to hear that you

were able to get some peace of mind reading Simon's post. Isn't the

internet great, where else can you get so much information from

people who know what you're going through?! I am sorry to hear that

you were not able to get Aidan's (LOOOOVE that name by the way!)

plagio treated. Like Debbie said, it isn't just Scotland that

doesn't know about treatment options. There are some parents here

who didn't receive treatment for one reason or another. I bet you

could be a wonderful source of information to these parents since

your child is a bit older than theirs.

Scotland is right up there of the places I want to travel to

sometime. My Grandmother had taken a trip to Ireland a few years

before she passed away to meet some of her family for the first

time. Then she went over to Scotland and was so ashamed to admit

that she like Scotland a lot better than Ireland! She was a bit

goofy that way!

Anyway, now that I have totally gotten off topic there, I want to say

welcome again and I look forward to reading more of your posts!

Niki

Kaylie & Danny (STARgrads)

Phila., PA USA

> HI Everybody

>

> My name is Lesley and I am Mum to 3 year old Aidan who is the light

> of my life (most of the time!).This internet lark is new to me and

I

> stumbled on your site only recently.I joined your group immediately

> for the following reasons.

> When Aidan was 8 weeks old I noticed a flat area at the back of his

> head becoming worse.I mentioned this to my GP who happily informed

me

> that the bones of a baby's head are soft and not to worry!Mothers

> instinct or something but I was not happy.At 12 weeks old it was

> obvious that his head was not " normal " and it was discovered that

he

> had a sterno-mastoid tumour which was preventing him from turning

his

> head.Treatment we found was daily phisiotherapy (not nice) which

> contined until he reached about 2 years.

> Despite the fact that the physio appeared to be working and he

could

> move his head freely, his head shape appeared to be getting worse

and

> I don't need to explain to the group how this made me feel.

> Anyway, the outcome of Aidan's story is that following an MRI scan

to

> rule out cranio.,he was discharged from the clinic with very little

> information of how this condition may affect him in the future.

> He is now a very happy,clever,georgeous 3 year old but with a flat

> head at the back right.He has maybe perhaps mild facial asymmetry

> that no-one else seems to notice except me.

> We live in Scotland, a place where it seems not a lot is known

about

> the condition never mind treatment with the Doc bands.

> I'd just like to say that this website is extremely helpful and has

> made me feel a bit happier about Aidan's condition.

> Simon from Adelaide's recent message cheered me up a great deal ,

as

> the story about his daughter just seemed to sum up our son's

> situation, despite the fact that his plagio.was left untreated

> through no choice of our own!!

> Sorry to go on so, but I feel better now!

>

> Thanks again

> Lesley (Aidan's Mum)

[Guest guest]

Just wanted to say hi Lesley and welcome! Thanks for sharing your story, its interesting to hear from parents that are further down the road in the plagio world. Guess it does not round out on its own as the Doctors will tell us!

' mom

[Guest guest]

Hi ,

You may want to join Explantation.com too and put your post on

there. Both of these sites have good info on explant. And there

are different people on both as well so you would get all kinds of

info about Dr.'s Good luck...I have heard about Pip's and you

definitely want an experienced surgeon...so you are smart to be

doing your homework. Good luck and let me know if there is anything

I can do. As far as recommending a surgeon in your area...I don't

know. I went to Dr. Kolb in Atlanta and couldn't be any happier

with my results. I know Dr. Feng in Ohio is excellent too. I know

traveling isn't the best...but for some of us..there wasn't a choice.

> Hi, I'm a new member that just joined.

>

> My story (short version):

>

> Had pip's saline implants placed december,99. Right side is

burning

> and hanging different and I feel it is leaking. My armpit area is

> tender and I have burning going down my right arm. I do work full

> time as a dental hygienist so muscle aches aren't uncommon on my

> right side/arms but this feels different.

>

> I've decided I want an explant/lift and be done with it. I was

naive

> thinking that if the saline leaks, no problem but we all know

about

> hindsight. I thought I researched well enough and never looked at

> implants as a one time thing (meaning there would be replacements

> needed in the future) but didn't realize you could get infections

if

> they leaked which we all know they are all going to leak some day.

>

> What I'm finding more interesting is that I emailed my original ps

> last week and have not heard from him yet. Surprise. I'm

learning

> that Pips aren't on the market anymore and were not FDA approved,

and

> I'm learning some doctors don't want to touch me. I just want a

good

> doctor to take these things out and I had no idea how difficult it

> would to find one.

>

> I joined two lists on saline implants and got a name of a

recommended

> explant ps (bernard alpert) but does anyone have any more info for

> other doctors or this one in particular in the San Francisco bay

area?

>

> Thanks for any information,

>

[Guest guest]

Welcome aboard Judy!

:-D

Chris

____

" What can one say of a soul, of a heart, filled with compassion? It is a

heart which burns with love for every creature: for human beings, birds, and

animals, for serpents and for demons. The thought of them and the sight of

them make the tears of the saint flow. And this immense and intense

compassion, which flows from the heart of the saints, makes them unable to

bear the sight of the smallest, most insignificant wound in any creature.

Thus they pray ceaselessly, with tears, even for animals, for enemies of the

truth, and for those who do them wrong. "

--Saint Isaac the Syrian

[Guest guest]

Bob,

I am a Mold Inspector. Although I am in Sacramento, CA, I would like to direct you to a Washington State (Government) website that has done a superb job in Q & A's on the topic. Please click on http://www.doh.wa.gov/ehp/ts/IAQ/Got_Mold.html . As I am sure you will undoubtedly have questions, please email me at moldtesting@... .

A lasting thought: I cannot express myself enough to say that not only must mold be properly cleaned, but all furnishings, personal items, and clothing exposed to mold MUST be cleaned AWAY from the contaminated area as well. I have been on many "Clearance Inspections" where the premise had to be completely recleaned because the personal articles, furniture, etc. when returned to the premise recontaminated the interior. Scary.

Another thought: Containment. Disturbing an area suspected of harboring mold will cause a mechanical entrusion of the mold into the air. In other words, mold spores will be filling the air throughout the interior of the premise. If you are going to remove debris or building material or carpet or ... that contains mold, that area must be contained, or separated from the rest of the interior area. This includes the HVAC (Heat, Ventilation, Air conditioning system). Otherwise the ducting and components of the HVAC, as well as the rest of the interior will become highly contaminated thus the expense and hazard grows. Hope this helps. It is not meant to scare anyone. Just to become more aware about Mold and its effects. Eventhough I'm in the Mold business, I want to improve the quality of health for anyone associated with mold. I know about mold. I had it. I was out of my house for 3 months because of Stacky. Hope that website I previously referred to answers some questions. We must lick this mold problem. Otherwise it will become known as "the enemy within". With education, I believe we can greatly reduce new cases. And I know we (all of us) can help to reduce existing cases by sharing our own experiences.

Ron Dierlam

Advanced Environmental Management, Inc.

[Guest guest]

Dear Ron:

I am writing a proposal to the 5th District, North Carolina in regard to Burr supporting Conyers bill, HR 5404 the "United States Toxic Mold Safety and Protection Act of 2002. If you could answer the following questions I would really be appreciative of your time and knowledge:

1) What equipment is needed for Code Inspectors to accurately test for environmental molds in buildings and homes?

2) Where and who provides training and education for Code Inspectors for NC or your state?

Thanks in advance for your help,

Christa D. Graves