Update on

[Guest guest]

Hi ,

I'm happy to hear that has adjusted well and is rounding! Yeah! Thanks for the update. Is he C? I was checking out the photos. He's very cute in his helmet!

mom to na

South Carolina

Re: Update on

Hello all,I am kinda new here. I've read a lot over the last few weeks and have asked a few questions and received some great help so far. has been in his STARband for almost 3 weeks -- he started at 14mm. He had a rough start getting used to it, but now it has become part of life. I can't believe how easily it has become part of him -- he looks strange when he doesn't have it on for his hour at nite! I have already noticed some change to his head -- he had a bulge in the back that is almost flat now. Just wanted to keep you all updated and thank you again for the help you have given me so far., 7mos., STARband 1/29/04 For more plagio info

[Guest guest]

Hi Barb,

I do not have any answers to your questions but I wanted to

congratulate you on informing your ped. Perhaps you will help another

child in her practice. It is a shame that we need to do all of the

research ourselves but we must really thank God for the internet.

Much easier nowadays. Anyway, great progress and great job informing

your ped! P.S. If is banded at CT in Connecticut, I have a

beach house nearby. Come by and have a picnic in the summer! Kathy

(mom to JT-DOC 10/30)

> Hi everyone! I think it's been just about a week since I joined

the

> group...and I have been on the phone nonstop ever since! Thanks

> again for all of your information and support. I just wanted to

let

> you know what we've accomplished over the past week and I have some

> follow-up questions for the group. I feel awkward taking so much

> from the group and not giving anything back...but I guess once this

> is all behind us I can help someone else along the path of seeking

> treatment for their baby!

>

> had her 4 month visit on Tuesday. My ped was the one who

> said that she had never prescribed any type of helmet/band therapy

in

> her practice and that according to a recent article she

read " helmets

> are not effective treatment. " Well, she broke her record! She

said

> she did some more reading and apparently helmets are the way to

go.

> She then wrote me a prescription and told me to set-up an appt with

> the local orthotist this week. (I am really, really trying to not

> type in a sarcastic tone.)

>

> She also examined 's head and said that the soft spots and

> sutures feel fine and that she thinks there is no concern re:

> cranio. I asked her if that meant that she wouldn't suggest that

we

> go to the neurosurgeon and she said that she didn't think it was

> necessary but certainly would understand if it would make us feel

> better. Since I was under the impression that even an experienced

> neurosurgeon would want to at least confirm any physical exam with

X-

> rays I said yes, we would like to set up an appt with the

> neurosurgeon!

>

> Since she prescribed the helmet/band I asked her some very specific

> questions re: the effectiveness of an active vs. a passive band and

> also whether she thought 's jaw asymmetry would be

> reversed. She said that she really didn't know and told me that

she

> would have to defer to the neurosurgeon's opinion (you know, the

> neurosurgeon that I could see if I felt it was necessary). I have

to

> say that I am really glad that she is now more open about

> helmets/bands but if I was her, I probably wouldn't have written a

> prescription given her unfamiliarity with them. Basically, I left

> her office still feeling as if I knew more about plagio!

>

> It has taken the ped's office two days but they have finally set up

> an appt with the neurosurgeon. The ped said we would have no

trouble

> getting in within a week or two---well try one month. We don't

have

> an appt with him until April 8th. In the meantime she thinks I am

> going to skip off to the local helmet man and get a

helmet

> prior to receiving what I consider to be a more conclusive opinion

> re: the cranio. Yikes!!!

>

> Anyway, as frustrating as that scenario is, much much more has gone

> well this week. I called Children's Hospital in Boston and we were

> somehow able to get into Dr. Proctor on March 15th!! Obviously

there

> was an angel on my shoulder when I made that call! I can only

assume

> that it was my concern about the cranio that got us in so quickly.

I

> am still hanging on to the appt with the neurosurgeon in Portland,

> however.

>

> Also, I contacted three orhtotists/clinics:

> 1) Cranial Tech--We have an appt in Connecticut for a consultation

> this coming Monday. Lucky --her first road trip is for

her

> crooked noggin! That'll be one for the baby book!

>

> 2) NOPCO at Children's in Boston--we can drop in there after our

appt

> with Dr. Proctor. They use Starbands there--but apparently they

> modify them somewhat. I am still unclear even after my discussion

> with the orhtotist but it seems as thought they might alter it from

> an active to a passive band. They seem to have a lot of experience

> there (the guy I talked to had 28 years of experience). They also

> have a scanner there, so no casting.

>

> 3)Local Orhtotist in Portland--he was trained down at Children's in

> Boston and uses the Starband according to the training that he

> received down there. Nice guy but only 10 years of experience. I

> think he's the only one in the state who does helmets/bands. Not

> certain how I feel about his experience level. No scanner.

> Appointment with him next Friday.

>

> Physical therapy starts tomorrow morning.

> Cranial Sacral Therapy consultation is next Tuesday.

>

> Not certain when I am supposed to actually go to work!

> But seriously, so relieved that things are at least moving along.

>

> My husband and I have been discussing everything and although we

> realize that we need to get confirmation that the cranio has been

> ruled out we are pretty much committed to going with the

> helmet/band. I hope that I am not being an insensitive mother. We

> are so fortunate that is still young--so I figure if we

go

> with the banding, PT and Cranial Sacral therapy--we may just see

> results relatively quickly?!?! It seems that it would all work

> together really well. My only concern, however, is that we find a

> competent orthotist.

>

> So, group---your input on the following would be soooooo

appreciated:

> 1. I don't really understand the difference between the active and

> the passive technology.

> 2. Has anyone had experience with NOPCO in Boston?

> 3. has jaw asymmetry--would a passive band be aggressive

> enough to correct that?

> 4. I understand now that was born with the plagio (I got

> the old " it'll round out " the morning after she was born--and being

> an inexperienced first time Mom, I didn't think anything of it).

> Does that have any impact on our decision to go with a passive vs.

an

> active band.

>

> I would so appreicate your input!

>

> I really, really hate to be negative about the medical profession

but

> I am so tired of coordinating treatment for myself. When I was

> pregnant with I was dignosed with a blood clotting

disorder

> after I had a superficial blood clot in my leg during my 5th

month.

> If I hadn't spent a week on the Internet researching treatment

> protocols I wonder sometimes if would be here today!! I

> had to educate my OB/GYN. Thankfully, we had a wonderful

> maternal/fetal specialist who was extremly experienced with my

> condition (lucky for him our research was in synch

>

> Off again to check which way 's head is going--I'm still

> repositioning with a vengeance!

>

> Best,

> Barb and (4 mos) in Maine

>

> PS--are prescriptions only good in the state where they are

written??

[Guest guest]

Hi,

I can only speak for the DOCband as that is what my daughter had. She

was a little over 11 months when she was DOCbanded, she received

awesome correction to her plagio and her facial/ear asymmetry.

I'll explain to you what an active band is and what a passive helmet

is. An active band is just that, active. It redirects the growth of

the head through gentle pressure not felt by the baby. They work

faster then passive helmets. Passive helmets rely totally on growth.

It sits on the baby's head and eventually the baby's head will grow

into the spape of the helmet, round. I'm not too sure if passive

helmets correct asymmetry, I don't think they do but I could be

wrong. I definitely don't think it would correct jaw asymmetry.

Cranial Technologies are the leaders in treating plagiocephaly

babies. It is all they do and they are experts in the field of

cranial banding. Yes, you can use a prescription in another state.

Please let us know what you decide, good luck making your decision.

> Hi everyone! I think it's been just about a week since I joined

the

> group...and I have been on the phone nonstop ever since! Thanks

> again for all of your information and support. I just wanted to

let

> you know what we've accomplished over the past week and I have some

> follow-up questions for the group. I feel awkward taking so much

> from the group and not giving anything back...but I guess once this

> is all behind us I can help someone else along the path of seeking

> treatment for their baby!

>

> had her 4 month visit on Tuesday. My ped was the one who

> said that she had never prescribed any type of helmet/band therapy

in

> her practice and that according to a recent article she

read " helmets

> are not effective treatment. " Well, she broke her record! She

said

> she did some more reading and apparently helmets are the way to

go.

> She then wrote me a prescription and told me to set-up an appt with

> the local orthotist this week. (I am really, really trying to not

> type in a sarcastic tone.)

>

> She also examined 's head and said that the soft spots and

> sutures feel fine and that she thinks there is no concern re:

> cranio. I asked her if that meant that she wouldn't suggest that

we

> go to the neurosurgeon and she said that she didn't think it was

> necessary but certainly would understand if it would make us feel

> better. Since I was under the impression that even an experienced

> neurosurgeon would want to at least confirm any physical exam with

X-

> rays I said yes, we would like to set up an appt with the

> neurosurgeon!

>

> Since she prescribed the helmet/band I asked her some very specific

> questions re: the effectiveness of an active vs. a passive band and

> also whether she thought 's jaw asymmetry would be

> reversed. She said that she really didn't know and told me that

she

> would have to defer to the neurosurgeon's opinion (you know, the

> neurosurgeon that I could see if I felt it was necessary). I have

to

> say that I am really glad that she is now more open about

> helmets/bands but if I was her, I probably wouldn't have written a

> prescription given her unfamiliarity with them. Basically, I left

> her office still feeling as if I knew more about plagio!

>

> It has taken the ped's office two days but they have finally set up

> an appt with the neurosurgeon. The ped said we would have no

trouble

> getting in within a week or two---well try one month. We don't

have

> an appt with him until April 8th. In the meantime she thinks I am

> going to skip off to the local helmet man and get a

helmet

> prior to receiving what I consider to be a more conclusive opinion

> re: the cranio. Yikes!!!

>

> Anyway, as frustrating as that scenario is, much much more has gone

> well this week. I called Children's Hospital in Boston and we were

> somehow able to get into Dr. Proctor on March 15th!! Obviously

there

> was an angel on my shoulder when I made that call! I can only

assume

> that it was my concern about the cranio that got us in so quickly.

I

> am still hanging on to the appt with the neurosurgeon in Portland,

> however.

>

> Also, I contacted three orhtotists/clinics:

> 1) Cranial Tech--We have an appt in Connecticut for a consultation

> this coming Monday. Lucky --her first road trip is for

her

> crooked noggin! That'll be one for the baby book!

>

> 2) NOPCO at Children's in Boston--we can drop in there after our

appt

> with Dr. Proctor. They use Starbands there--but apparently they

> modify them somewhat. I am still unclear even after my discussion

> with the orhtotist but it seems as thought they might alter it from

> an active to a passive band. They seem to have a lot of experience

> there (the guy I talked to had 28 years of experience). They also

> have a scanner there, so no casting.

>

> 3)Local Orhtotist in Portland--he was trained down at Children's in

> Boston and uses the Starband according to the training that he

> received down there. Nice guy but only 10 years of experience. I

> think he's the only one in the state who does helmets/bands. Not

> certain how I feel about his experience level. No scanner.

> Appointment with him next Friday.

>

> Physical therapy starts tomorrow morning.

> Cranial Sacral Therapy consultation is next Tuesday.

>

> Not certain when I am supposed to actually go to work!

> But seriously, so relieved that things are at least moving along.

>

> My husband and I have been discussing everything and although we

> realize that we need to get confirmation that the cranio has been

> ruled out we are pretty much committed to going with the

> helmet/band. I hope that I am not being an insensitive mother. We

> are so fortunate that is still young--so I figure if we

go

> with the banding, PT and Cranial Sacral therapy--we may just see

> results relatively quickly?!?! It seems that it would all work

> together really well. My only concern, however, is that we find a

> competent orthotist.

>

> So, group---your input on the following would be soooooo

appreciated:

> 1. I don't really understand the difference between the active and

> the passive technology.

> 2. Has anyone had experience with NOPCO in Boston?

> 3. has jaw asymmetry--would a passive band be aggressive

> enough to correct that?

> 4. I understand now that was born with the plagio (I got

> the old " it'll round out " the morning after she was born--and being

> an inexperienced first time Mom, I didn't think anything of it).

> Does that have any impact on our decision to go with a passive vs.

an

> active band.

>

> I would so appreicate your input!

>

> I really, really hate to be negative about the medical profession

but

> I am so tired of coordinating treatment for myself. When I was

> pregnant with I was dignosed with a blood clotting

disorder

> after I had a superficial blood clot in my leg during my 5th

month.

> If I hadn't spent a week on the Internet researching treatment

> protocols I wonder sometimes if would be here today!! I

> had to educate my OB/GYN. Thankfully, we had a wonderful

> maternal/fetal specialist who was extremly experienced with my

> condition (lucky for him our research was in synch

>

> Off again to check which way 's head is going--I'm still

> repositioning with a vengeance!

>

> Best,

> Barb and (4 mos) in Maine

>

> PS--are prescriptions only good in the state where they are

written??

[Guest guest]

Barb,

Thank you so much for the detailed update. It looks like somehow

you have absorbed a huge amount of data in such a short week, and

are dealing with it amazingly well! I am so impressed that you have

sorted through all of the info and have fearlessly lined up several

options for consideration. I am thrilled to hear of your ped

backtracking on her earlier viewpoint about helmets/bands (it sounds

like she just shot off at the mouth too quickly, and later even

doubted herself!) For the meantime, many of us continue to be

better informed than the medical community on the subject of plagio,

and it certainly can leave us high and dry as far as getting a

valuable recommendation from a medical expert. I don't have any

advice about ruling out cranio - we did see a ped neuro who ruled it

out by sight with Remy, and I didn't think anything of it then!

Here are my answers to your 4 questions, and I'm sure others will

chime in:

1) A passive helmet relies on the baby's growth spurts alone to

allow the head to fill out into the round shape of the helmet. This

type of helmet works best on a younger baby with plenty of growth

spurts ahead of him/her. The pressure exerted by the helmet amounts

to static or just " holding " pressure. The adjustment schedule on

this type of helmet is approximately every 4 weeks, indicative of

the passive design.

An active band (such as the DOCband, STARband, or Hanger Cranial

Band) uses both the baby's growth spurts AND gentle pressure in

excess of the static pressure found in passive helmets to actively

recontour the baby's head, and can be used on both younger and older

babies, up to 18-24 months of age. The adjustment schedule of an

active band is approximately every 2 weeks (more frequently than

that on younger babies, or less frequently on older babies),

indicative of a more active design.

2) carter@... (Pam) is the only member who has listed her email

in the Helmet/Band Database as having experience with NOPCO. I may

have mentioned her before; have you attempted to email her?

Hopefully any other members who have experience with NOPCO will see

your post and reply!

3) Here is a study on jaw asymmetry that shows no improvement in

the jaw joint position even with helmet therapy. I do not know what

brand or type, or combination thereof was used in the study.

Perhaps you can speak to the orthotist specifically about this

concern and see if they have any updated data about how a misaligned

jaw is affected by treatment. Here is the link (if the link is 2

lines long, you may need to copy and paste the entire link to your

address bar):

Anthropometric Analysis of Mandibular Asymmetry in Infants with

Deformational Posterior Plagiocephaly (pub. Aug. 2002)

This study supports the clinical observation that the mandibular

asymmetry in deformational posterior plagiocephaly is secondary to

rotation of the cranial base and anterior displacement of the

temporomandibular joint (quantified by anterior auricular position)

and not the result of primary mandibular deformity. Also this study

showed that improvement in cranial asymmetry occurred with helmet

therapy, but there was no correction of auricular and

temporomandibular joint position.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12149730 & dopt=Abstract

4) I don't know the answer to this one, but I don't think it is as

critical where the plagio started; I wouldn't consider it's origin

when evaluating whether to use an active band or passive helmet.

Take care, and please let us know how your evaluations make out. Do

you know if the orthotist you will be seeing in Portland is listed

it the Helmet/Band Database? I would really like to add his info if

it is not already in there!

Christie (Mom to Repo'd Remy)

> Hi everyone! I think it's been just about a week since I joined

the

> group...and I have been on the phone nonstop ever since! Thanks

> again for all of your information and support. I just wanted to

let

> you know what we've accomplished over the past week and I have

some

> follow-up questions for the group. I feel awkward taking so much

> from the group and not giving anything back...but I guess once

this

> is all behind us I can help someone else along the path of seeking

> treatment for their baby!

>

> had her 4 month visit on Tuesday. My ped was the one

who

> said that she had never prescribed any type of helmet/band therapy

in

> her practice and that according to a recent article she

read " helmets

> are not effective treatment. " Well, she broke her record! She

said

> she did some more reading and apparently helmets are the way to

go.

> She then wrote me a prescription and told me to set-up an appt

with

> the local orthotist this week. (I am really, really trying to not

> type in a sarcastic tone.)

>

> She also examined 's head and said that the soft spots

and

> sutures feel fine and that she thinks there is no concern re:

> cranio. I asked her if that meant that she wouldn't suggest that

we

> go to the neurosurgeon and she said that she didn't think it was

> necessary but certainly would understand if it would make us feel

> better. Since I was under the impression that even an experienced

> neurosurgeon would want to at least confirm any physical exam with

X-

> rays I said yes, we would like to set up an appt with the

> neurosurgeon!

>

> Since she prescribed the helmet/band I asked her some very

specific

> questions re: the effectiveness of an active vs. a passive band

and

> also whether she thought 's jaw asymmetry would be

> reversed. She said that she really didn't know and told me that

she

> would have to defer to the neurosurgeon's opinion (you know, the

> neurosurgeon that I could see if I felt it was necessary). I have

to

> say that I am really glad that she is now more open about

> helmets/bands but if I was her, I probably wouldn't have written a

> prescription given her unfamiliarity with them. Basically, I left

> her office still feeling as if I knew more about plagio!

>

> It has taken the ped's office two days but they have finally set

up

> an appt with the neurosurgeon. The ped said we would have no

trouble

> getting in within a week or two---well try one month. We don't

have

> an appt with him until April 8th. In the meantime she thinks I am

> going to skip off to the local helmet man and get a

helmet

> prior to receiving what I consider to be a more conclusive opinion

> re: the cranio. Yikes!!!

>

> Anyway, as frustrating as that scenario is, much much more has

gone

> well this week. I called Children's Hospital in Boston and we

were

> somehow able to get into Dr. Proctor on March 15th!! Obviously

there

> was an angel on my shoulder when I made that call! I can only

assume

> that it was my concern about the cranio that got us in so

quickly. I

> am still hanging on to the appt with the neurosurgeon in Portland,

> however.

>

> Also, I contacted three orhtotists/clinics:

> 1) Cranial Tech--We have an appt in Connecticut for a consultation

> this coming Monday. Lucky --her first road trip is for

her

> crooked noggin! That'll be one for the baby book!

>

> 2) NOPCO at Children's in Boston--we can drop in there after our

appt

> with Dr. Proctor. They use Starbands there--but apparently they

> modify them somewhat. I am still unclear even after my discussion

> with the orhtotist but it seems as thought they might alter it

from

> an active to a passive band. They seem to have a lot of

experience

> there (the guy I talked to had 28 years of experience). They also

> have a scanner there, so no casting.

>

> 3)Local Orhtotist in Portland--he was trained down at Children's

in

> Boston and uses the Starband according to the training that he

> received down there. Nice guy but only 10 years of experience. I

> think he's the only one in the state who does helmets/bands. Not

> certain how I feel about his experience level. No scanner.

> Appointment with him next Friday.

>

> Physical therapy starts tomorrow morning.

> Cranial Sacral Therapy consultation is next Tuesday.

>

> Not certain when I am supposed to actually go to work!

> But seriously, so relieved that things are at least moving along.

>

> My husband and I have been discussing everything and although we

> realize that we need to get confirmation that the cranio has been

> ruled out we are pretty much committed to going with the

> helmet/band. I hope that I am not being an insensitive mother.

We

> are so fortunate that is still young--so I figure if we

go

> with the banding, PT and Cranial Sacral therapy--we may just see

> results relatively quickly?!?! It seems that it would all work

> together really well. My only concern, however, is that we find a

> competent orthotist.

>

> So, group---your input on the following would be soooooo

appreciated:

> 1. I don't really understand the difference between the active

and

> the passive technology.

> 2. Has anyone had experience with NOPCO in Boston?

> 3. has jaw asymmetry--would a passive band be

aggressive

> enough to correct that?

> 4. I understand now that was born with the plagio (I

got

> the old " it'll round out " the morning after she was born--and

being

> an inexperienced first time Mom, I didn't think anything of it).

> Does that have any impact on our decision to go with a passive vs.

an

> active band.

>

> I would so appreicate your input!

>

> I really, really hate to be negative about the medical profession

but

> I am so tired of coordinating treatment for myself. When I was

> pregnant with I was dignosed with a blood clotting

disorder

> after I had a superficial blood clot in my leg during my 5th

month.

> If I hadn't spent a week on the Internet researching treatment

> protocols I wonder sometimes if would be here today!! I

> had to educate my OB/GYN. Thankfully, we had a wonderful

> maternal/fetal specialist who was extremly experienced with my

> condition (lucky for him our research was in synch

>

> Off again to check which way 's head is going--I'm still

> repositioning with a vengeance!

>

> Best,

> Barb and (4 mos) in Maine

>

> PS--are prescriptions only good in the state where they are

written??

[Guest guest]

Wow! You've been busy! But it sounds like you are finally on your way.

Just to let you know, not all neuros will do a CT or xray to check to cranio. Our's didn't and I didn't mind because Matt was such a classic plagio case and I wasn't afraid it was worse. But I think I'd feel more comfortable with a neuro saying that wouldn't be necessary as opposed to just my ped.

Good Luck! I know how frustrating coordinating all this is...but just remember you are doing what's best for your daughter and in the end it will all be worth it!

Matt (DOCgrad 13-Feb-04/10-14mos./PA)b_belik <ddakers@...> wrote:

Hi everyone! I think it's been just about a week since I joined the group...and I have been on the phone nonstop ever since! Thanks again for all of your information and support. I just wanted to let you know what we've accomplished over the past week and I have some follow-up questions for the group. I feel awkward taking so much from the group and not giving anything back...but I guess once this is all behind us I can help someone else along the path of seeking treatment for their baby! had her 4 month visit on Tuesday. My ped was the one who said that she had never prescribed any type of helmet/band therapy in her practice and that according to a recent article she read "helmets are not effective treatment." Well, she broke her record! She said she did some more reading and

apparently helmets are the way to go. She then wrote me a prescription and told me to set-up an appt with the local orthotist this week. (I am really, really trying to not type in a sarcastic tone.)She also examined 's head and said that the soft spots and sutures feel fine and that she thinks there is no concern re: cranio. I asked her if that meant that she wouldn't suggest that we go to the neurosurgeon and she said that she didn't think it was necessary but certainly would understand if it would make us feel better. Since I was under the impression that even an experienced neurosurgeon would want to at least confirm any physical exam with X-rays I said yes, we would like to set up an appt with the neurosurgeon!Since she prescribed the helmet/band I asked her some very specific questions re: the effectiveness of an active vs. a passive band and also whether she thought 's

jaw asymmetry would be reversed. She said that she really didn't know and told me that she would have to defer to the neurosurgeon's opinion (you know, the neurosurgeon that I could see if I felt it was necessary). I have to say that I am really glad that she is now more open about helmets/bands but if I was her, I probably wouldn't have written a prescription given her unfamiliarity with them. Basically, I left her office still feeling as if I knew more about plagio!It has taken the ped's office two days but they have finally set up an appt with the neurosurgeon. The ped said we would have no trouble getting in within a week or two---well try one month. We don't have an appt with him until April 8th. In the meantime she thinks I am going to skip off to the local helmet man and get a helmet prior to receiving what I consider to be a more conclusive opinion re: the cranio.

Yikes!!!Anyway, as frustrating as that scenario is, much much more has gone well this week. I called Children's Hospital in Boston and we were somehow able to get into Dr. Proctor on March 15th!! Obviously there was an angel on my shoulder when I made that call! I can only assume that it was my concern about the cranio that got us in so quickly. I am still hanging on to the appt with the neurosurgeon in Portland, however.Also, I contacted three orhtotists/clinics:1) Cranial Tech--We have an appt in Connecticut for a consultation this coming Monday. Lucky --her first road trip is for her crooked noggin! That'll be one for the baby book!2) NOPCO at Children's in Boston--we can drop in there after our appt with Dr. Proctor. They use Starbands there--but apparently they modify them somewhat. I am still unclear even after my discussion with the orhtotist but it

seems as thought they might alter it from an active to a passive band. They seem to have a lot of experience there (the guy I talked to had 28 years of experience). They also have a scanner there, so no casting.3)Local Orhtotist in Portland--he was trained down at Children's in Boston and uses the Starband according to the training that he received down there. Nice guy but only 10 years of experience. I think he's the only one in the state who does helmets/bands. Not certain how I feel about his experience level. No scanner. Appointment with him next Friday.Physical therapy starts tomorrow morning.Cranial Sacral Therapy consultation is next Tuesday.Not certain when I am supposed to actually go to work! :)But seriously, so relieved that things are at least moving along.My husband and I have been discussing everything and although we realize that we need to get

confirmation that the cranio has been ruled out we are pretty much committed to going with the helmet/band. I hope that I am not being an insensitive mother. We are so fortunate that is still young--so I figure if we go with the banding, PT and Cranial Sacral therapy--we may just see results relatively quickly?!?! It seems that it would all work together really well. My only concern, however, is that we find a competent orthotist.So, group---your input on the following would be soooooo appreciated:1. I don't really understand the difference between the active and the passive technology. 2. Has anyone had experience with NOPCO in Boston?3. has jaw asymmetry--would a passive band be aggressive enough to correct that?4. I understand now that was born with the plagio (I got the old "it'll round out" the morning after she was born--and being

an inexperienced first time Mom, I didn't think anything of it). Does that have any impact on our decision to go with a passive vs. an active band.I would so appreicate your input!I really, really hate to be negative about the medical profession but I am so tired of coordinating treatment for myself. When I was pregnant with I was dignosed with a blood clotting disorder after I had a superficial blood clot in my leg during my 5th month. If I hadn't spent a week on the Internet researching treatment protocols I wonder sometimes if would be here today!! I had to educate my OB/GYN. Thankfully, we had a wonderful maternal/fetal specialist who was extremly experienced with my condition (lucky for him our research was in synch Off again to check which way 's head is going--I'm still repositioning with a vengeance!Best,Barb and (4

mos) in MainePS--are prescriptions only good in the state where they are written??For more plagio info

[Guest guest]

Becky,

Thanks for the update! I'm so happy to hear that is continuing

to round out. I can't wait to see the pics. On a scale of 1 to 10

what do you rate the Bumbo seat as for a repo item?

> Hi Everyone...

>

> is doing well. We are having some amount of success with

> repo'ing her. For those reading about us for the first time,

> developed a flat spot on the back left side of her head at about

2mo

> So we started repositioning her after her 2mo checkup. We weren't

> very aggressive about it and the spot got a lot worse. So I found

> this group and a TON of information. We began agressively repo'ing

> her, well as aggressively as we can with a 2 and 4 year old to care

> for as well. And her head is slowly getting better/rounder.

>

> When you look at her head from the top she seems almost perfectly

> round. And that's a major improvement. But when I look at it from

> the back, I can still see a flat spot on the back left. I don't

know

> if you will be able to see it in a picture, but I am going to get

> some pics and post them. I'll let you know when I do.

>

> As far as good repo ideas, we didn't move her head so much as get

her

> completely off it. We started sleeping her on her tummy around 4

> months (I tried her side, but she wouldn't have it). Around that

> time we started putting her in the walker as well. That way, she

> could lean forward against the tray and play with stuff. I also

> started telling my 4yo son, who is a born " helper " that it was very

> important that always look at him on her right side. So he

> would sit on her right side and yell when she looked the other way.

>

> I did set a repo deadline of 6mo old. And if we have no further

> success than right now, I would still be satisfied, but since she

is

> still so young, and there is potential for addl rounding, I made an

> appt at the Craniofacial Clinic at Children's Hospital of

> Pittsburgh. We go there on 4/1. She really isn't that bad and

they

> may tell us that continued repo will be successful, but that's what

> we're going for, to find out which direction is our best bet.

>

> The Bumbo seat is great. We have been using it alot, especially at

> the dinner table. I read somewhere not to use it on a raised

> surface, but I put her on the dinner table and she can sit with us

> while we eat. I still have to keep her entertained while I'm

eating,

> but it's all good.

>

> Wow, this post turned out to be pretty long. Sorry. I am just

happy

> to be able to talk to people about and her head. Our

families

> don't seem to take it as seriously as I do.

>

> Becky and (6mo) in Pgh, PA

[Guest guest]

Hi Becky,

Thanks for giving us such a great update on . Sounds like your

oldest son is a big help . Let us know if you get pictures up.

, Hannah's mom

Cape Cod, Ma

> Hi Everyone...

>

> is doing well. We are having some amount of success with

> repo'ing her. For those reading about us for the first time,

> developed a flat spot on the back left side of her head at about

2mo

> So we started repositioning her after her 2mo checkup. We weren't

> very aggressive about it and the spot got a lot worse. So I found

> this group and a TON of information. We began agressively

repo'ing

> her, well as aggressively as we can with a 2 and 4 year old to

care

> for as well. And her head is slowly getting better/rounder.

>

> When you look at her head from the top she seems almost perfectly

> round. And that's a major improvement. But when I look at it

from

> the back, I can still see a flat spot on the back left. I don't

know

> if you will be able to see it in a picture, but I am going to get

> some pics and post them. I'll let you know when I do.

>

> As far as good repo ideas, we didn't move her head so much as get

her

> completely off it. We started sleeping her on her tummy around 4

> months (I tried her side, but she wouldn't have it). Around that

> time we started putting her in the walker as well. That way, she

> could lean forward against the tray and play with stuff. I also

> started telling my 4yo son, who is a born " helper " that it was

very

> important that always look at him on her right side. So he

> would sit on her right side and yell when she looked the other way.

>

> I did set a repo deadline of 6mo old. And if we have no further

> success than right now, I would still be satisfied, but since she

is

> still so young, and there is potential for addl rounding, I made

an

> appt at the Craniofacial Clinic at Children's Hospital of

> Pittsburgh. We go there on 4/1. She really isn't that bad and

they

> may tell us that continued repo will be successful, but that's

what

> we're going for, to find out which direction is our best bet.

>

> The Bumbo seat is great. We have been using it alot, especially

at

> the dinner table. I read somewhere not to use it on a raised

> surface, but I put her on the dinner table and she can sit with us

> while we eat. I still have to keep her entertained while I'm

eating,

> but it's all good.

>

> Wow, this post turned out to be pretty long. Sorry. I am just

happy

> to be able to talk to people about and her head. Our

families

> don't seem to take it as seriously as I do.

>

> Becky and (6mo) in Pgh, PA

[Guest guest]

,

I think it's too bad if your ped doesn't like it. is your son

and this was your decision to make. He can disagree all he wants. I

hope for his sake he agrees with you. :-)

Let us know how you make out.

--- In Plagiocephaly , " " <heather_f74@e...>

wrote:

> We had adjustment #2 today, it went very well, he loves the

> clinician and so do I, she's great. His head circumfrence was 42 2

> weeks ago, now it's 45, she pulled out the cast of his head, and I

> saw GREAT correction that way. He's rounding out quite nicely. He

> has started scratching his forehead just under the top of his band,

> it bothers me, but the clinician said that it probably itches, I

> can't seem to get his nails short enough not to leave marks. And,

I

> have a question. Tomorrow is his first visit to the pediatrician

> with his band, when the nurse called me to make sure I had gone to

> the neuro consult a few weeks ago, I told her what the plan of

> action was and she asked a lot of questions, as if their office has

> never heard of using helmets/bands to correct plagio. Anyways, the

> question is, have any of you had this problem and how do I deal

with

> it if the ped doesn't like it? I tend to get a little hot tempered

> when it comes to differing opinions regarding 's medical

> treatment, since I do research everything before I let anyone do

> anything to him. I know that the band is the best thing for him,

> and I don't really want to fight the doctor, but I know I will if

he

> disagrees.

>

> Thanks so much.

>

>

[Guest guest]

Well, the ped appointment on Wed was interesting. The doc asked if

it was working, I told him that yes I'm seeing wonderful

improvement, and I let him know that I wasn't happy about not

getting the PT referral I was supposed to have gotten 2 months ago,

and that I am doing the PT myself at home and we are seeing good

improvement for the tort as well. He then asked when we go back to

the neuro, so I told him on June 28, I guess he wasn't happy with

that answer, so he had the neuro change it to June 1. Things are

still going well with the band and PT, I see more improvement every

day.

> > We had adjustment #2 today, it went very well, he loves the

> > clinician and so do I, she's great. His head circumfrence was

42 2

> > weeks ago, now it's 45, she pulled out the cast of his head, and

I

> > saw GREAT correction that way. He's rounding out quite nicely.

He

> > has started scratching his forehead just under the top of his

band,

> > it bothers me, but the clinician said that it probably itches, I

> > can't seem to get his nails short enough not to leave marks.

And,

> I

> > have a question. Tomorrow is his first visit to the

pediatrician

> > with his band, when the nurse called me to make sure I had gone

to

> > the neuro consult a few weeks ago, I told her what the plan of

> > action was and she asked a lot of questions, as if their office

has

> > never heard of using helmets/bands to correct plagio. Anyways,

the

> > question is, have any of you had this problem and how do I deal

> with

> > it if the ped doesn't like it? I tend to get a little hot

tempered

> > when it comes to differing opinions regarding 's medical

> > treatment, since I do research everything before I let anyone do

> > anything to him. I know that the band is the best thing for

him,

> > and I don't really want to fight the doctor, but I know I will

if

> he

> > disagrees.

> >

> > Thanks so much.

> >

> >

[Guest guest]

Thanks for the great update. i cant wait to see 's pictures.

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

Update on

> Hi

> It sounds like people have had alot of problems with the Starbands.

> Ours seems to be working pretty good. got his new one last week

> (the first one didn't fit well). The new one fits very well. He is

> happy in the band. I feel like I can tell a difference already.

> He's had it about 4 weeks and the bossing on his forehead has gone

> down and the flatness on the back of his head has raised. His ears

> are still very off. Overall, I have been pretty happy with our

> experience so far. I am going to try and post some pictures of

> in his band and some before pictures too.

>

> Sara & 8/2/03

> Starband 3/04

> Mishawaka, IN

>

>

>

>

> For more plagio info

[Guest guest]

Yay Sara! Very happy to hear things are going so well for &

he's showing correction. Please let us know when lets you add

the pics, thanks for the good news Keep us posted.

Debbie

>

> > Hi

> > It sounds like people have had alot of problems with the

Starbands.

> > Ours seems to be working pretty good. got his new one last

week

> > (the first one didn't fit well). The new one fits very well. He

is

> > happy in the band. I feel like I can tell a difference already.

> > He's had it about 4 weeks and the bossing on his forehead has gone

> > down and the flatness on the back of his head has raised. His

ears

> > are still very off. Overall, I have been pretty happy with our

> > experience so far. I am going to try and post some pictures of

> > in his band and some before pictures too.

> >

> > Sara & 8/2/03

> > Starband 3/04

> > Mishawaka, IN

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

Yeah! I'm so happy to read a positive story! Thank you for posting.

Natasha

> Hi

> It sounds like people have had alot of problems with the

Starbands.

> Ours seems to be working pretty good. got his new one last

week

> (the first one didn't fit well). The new one fits very well. He

is

> happy in the band. I feel like I can tell a difference already.

> He's had it about 4 weeks and the bossing on his forehead has gone

> down and the flatness on the back of his head has raised. His

ears

> are still very off. Overall, I have been pretty happy with our

> experience so far. I am going to try and post some pictures of

> in his band and some before pictures too.

>

> Sara & 8/2/03

> Starband 3/04

> Mishawaka, IN

[Guest guest]

Glad to hear that you are having a good experience with the band!

Connor (6mo. - tort/plagio) casting 4/27

St. Louis, MO

--- In Plagiocephaly , " snydertsc2000 " <snydertsc@a...>

wrote:

> Hi

> It sounds like people have had alot of problems with the Starbands.

> Ours seems to be working pretty good. got his new one last week

> (the first one didn't fit well). The new one fits very well. He is

> happy in the band. I feel like I can tell a difference already.

> He's had it about 4 weeks and the bossing on his forehead has gone

> down and the flatness on the back of his head has raised. His ears

> are still very off. Overall, I have been pretty happy with our

> experience so far. I am going to try and post some pictures of

> in his band and some before pictures too.

>

> Sara & 8/2/03

> Starband 3/04

> Mishawaka, IN

[Guest guest]

HI Sara,

I am so glad to hear a good STARband story. I am glad that this band

is fitting much better. I am sure that you will see great correction

with it, and will be graduating before you know it!

Keep us posted when possible!

- mom to Aidan

> Hi

> It sounds like people have had alot of problems with the

Starbands.

> Ours seems to be working pretty good. got his new one last

week

> (the first one didn't fit well). The new one fits very well. He

is

> happy in the band. I feel like I can tell a difference already.

> He's had it about 4 weeks and the bossing on his forehead has gone

> down and the flatness on the back of his head has raised. His ears

> are still very off. Overall, I have been pretty happy with our

> experience so far. I am going to try and post some pictures of

> in his band and some before pictures too.

>

> Sara & 8/2/03

> Starband 3/04

> Mishawaka, IN

[Guest guest]

Hi Sara,

I'm so glad 's new band is better. How encouraging that you're

already seeing change too! Let us know if you're able to get any

pics posted.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi

> It sounds like people have had alot of problems with the

Starbands.

> Ours seems to be working pretty good. got his new one last

week

> (the first one didn't fit well). The new one fits very well. He

is

> happy in the band. I feel like I can tell a difference already.

> He's had it about 4 weeks and the bossing on his forehead has gone

> down and the flatness on the back of his head has raised. His

ears

> are still very off. Overall, I have been pretty happy with our

> experience so far. I am going to try and post some pictures of

> in his band and some before pictures too.

>

> Sara & 8/2/03

> Starband 3/04

> Mishawaka, IN

[Guest guest]

That's awesome news!! Thanks for the great update. 11 weeks is wonderful.

Angie and Jenna(STAR grad)

Update On

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn. We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!! She

> will then wear her band for 2 more weeks,(for a total of 11 weeks) so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT. We

> now are waiting to here from their therapist to set an evaluation appt

> (should be in the next 2 weeks). 's orthotist at CT says she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

>

>

>

>

> For more plagio info

[Guest guest]

Miss it - heh? lol

That is wonderful news!

Sue

Colin F.

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn.

We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!! She

> will then wear her band for 2 more weeks,(for a total of 11 weeks)

so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT.

We

> now are waiting to here from their therapist to set an evaluation

appt

> (should be in the next 2 weeks). 's orthotist at CT says she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get

to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

[Guest guest]

It sounds great, ! Are you happy with the shape of her head?

Valeria (with Lucia)

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn.

We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!!

She

> will then wear her band for 2 more weeks,(for a total of 11 weeks)

so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT.

We

> now are waiting to here from their therapist to set an evaluation

appt

> (should be in the next 2 weeks). 's orthotist at CT says

she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get

to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

[Guest guest]

That's wonderful news!! Congrats!!

Andi

Connor (PPO helmet 5/4/04)

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn. We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!! She

> will then wear her band for 2 more weeks,(for a total of 11 weeks) so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT. We

> now are waiting to here from their therapist to set an evaluation appt

> (should be in the next 2 weeks). 's orthotist at CT says she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

[Guest guest]

,

Congratulations on 's upcoming graduation! That is fantastic

news that she will have needed only 11 weeks total correction time.

Please let us know when she officially graduates, and I'd love to

see some before and after photos when you get a chance.

Take care,

Christie (Mom to Repo'd Remy)

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn.

We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!!

She

> will then wear her band for 2 more weeks,(for a total of 11 weeks)

so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT.

We

> now are waiting to here from their therapist to set an evaluation

appt

> (should be in the next 2 weeks). 's orthotist at CT says

she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get

to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

[Guest guest]

WOOOOHOOOO! Thanks for sharing such an awesome update with us. Please

let us know when is an official grad.

> Hi Everyone,

> Just thought I would give you all an update on Kathyrn.

We

> had our adjustment yesterday in Dallas and received some awesome

> news!! will be having her LAST adjustment on July 6th!! She

> will then wear her band for 2 more weeks,(for a total of 11 weeks)

so

> by her daddy's birthday(the 24th) she will be graduated!!! We also

> had our first appt with ECI to see if she qualifies for their PT.

We

> now are waiting to here from their therapist to set an evaluation

appt

> (should be in the next 2 weeks). 's orthotist at CT says she

> does not think will qualify because her tort has gotten so

> much better. We will be going private at least once a month if she

> doesn't go with ECI. So all in all it looks like my girl will get

to

> wear that bathing suit to the lake in august and not have to worry

> about the band. On a side note....I am still gonna miss the darn

> thing!!! I know I know...it's crazy!!!

> (mom to ,plagio/brachy/tort,banded 5/03,Texas)

[Guest guest]

Hi Leanne,

I am so happy to hear that is progressing nicely in his

Hanger Cranial Band, and that graduation is in the not-too-distant

future! It's very encouraging to hear that you are having a good

experience at your Hanger facility. I don't think we have your

location listed in our Helmet/Band Database - Hanger has 5 locations

listed in NC. Would you mind sharing where you are going for

's treatment and then we could add that info to the database?

Hanger has their own FDA approved Hanger Cranial Band, and sometimes

offers the Starband as well; they look similar to each other . It

sounds as though is in the Hanger Cranial Band.

Regarding ear misalignment correction, I have read in other posts

that it is the last thing that corrects, so maybe you will get some

improvement there with . Would you keep us posted on how

that is coming along?

Regression is very rare, I hear, after banding. How old is

again? Is he still perferring to sleep on his back at night?

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " USA_EH93 " <usa_eh93@y...>

wrote:

> Well we went to for our check up on Monday. Everything is coming

> along nicely. will have to wear his helmet for at least

> another month, maybe be as late as August(which is fine by me). I

> misinformed you all that he wears a star band, He is seen by

> Hangers, (which we have had a wonderful experience) and he wears

one

> that they made specifically for him, ironically the gal who used

to

> do the helmets for them left to go to work for starband.

> I do have a question, once the helmet comes off, do we have to

worry

> that it may return to the aysmetrical, and what about the ears

will

> they line up completly?

> thanks

>

> Leanne

> mommy to

> Wilmington NC

[Guest guest]

Thanks for the great update Leanne! Regression post band is very

uncommon. It would be more likely in a younger infant under 6 mos of

age when their head is still soft & malleable, even so, it's not

heard of often.

Debbie

--- In Plagiocephaly , " USA_EH93 " <usa_eh93@y...>

wrote:

> Well we went to for our check up on Monday. Everything is coming

> along nicely. will have to wear his helmet for at least

> another month, maybe be as late as August(which is fine by me). I

> misinformed you all that he wears a star band, He is seen by

> Hangers, (which we have had a wonderful experience) and he wears

one

> that they made specifically for him, ironically the gal who used

to

> do the helmets for them left to go to work for starband.

> I do have a question, once the helmet comes off, do we have to

worry

> that it may return to the aysmetrical, and what about the ears will

> they line up completly?

> thanks

>

> Leanne

> mommy to

> Wilmington NC

[Guest guest]

Hi! Just wanted to say I am new to the board so I don't know

's history but that I have a son named , also, who is

getting ready to have a DOC band put on August 2nd. I'm also from

North Carolina (although I live in NJ now). We are moving back next

July. I'm originally from Lexington!

leigh

Will 4/11/04

[Guest guest]

Hi Leanne!

I'm glad to hear that is doing very well in his helmet...

it sounds like he's really almost done! Will you and the ortho be

making this decision soon, or is he basically done according to the

ortho? Please post when has his official graduation from

his helmet, and I'd love to see a picture as well.

Is in a Hanger Cranial Band? We had a member post a few

days ago wanting to hear how babies in Hanger Cranial Bands were

progressing. If he is, perhaps you will have a before and after

photo(s) that you can include in the photos/before and after/local

helmet folder if you are willing to share.

Thank you for the great update,

Christie (MOm to Repo'd Remy)

--- In Plagiocephaly , " USA_EH93 " <usa_eh93@y...>

wrote:

> had a check about 1 1/2 weeks ago(sorry this has taken so

> long to post). He is pleased with where is now, he states

he

> always would like to get them with 1/8 , and is now there.

> He really does not need to wear the helmet anymore. Of course we

are

> a little clingy to the helmet, because we want to make sure he is

> done with it. Of course last week he spent it with Grandma, and

she

> states he kept taking it off and would not wear it, even at night,

I

> kinda think she did not really try to put it on him. But he is on

> his way home now, so I will get to see him real soon. I will let

you

> all know the official outcome.

> Take care for now

>

> Leanne, mommy to

> Wilmington NC