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Marissa,

Where are you located? The Hanger band is approved for use in infants up to 18 months of age so starting after 1 year is normal . We have quiet a few members whose kids were banded past one year. Also, Cranial Tech will even band a 18 month old sine there product is approved up to 24 months.

Only having one band for so long does seem strange. I've heard of using them 6 months but usually they start to loose their holding power. So Kayless has been wearing hers for 7 months? What kind of physical therapy are you doing for her torticollis? Tort can cause even more asymmetry issues, especially in the face. Have you seen improvement in her headshape and tort in the past 9 months.

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.commarissa272 <jnknagel@...> wrote:

Thanks Jen! :)Well, Kaylee wasn't diagnosed with Torticollis and Plagiocephaly until she was 9 months old. We had been turned away by 6 different doctors (who all told us it would go away on it's own) before she was referred to a specialist. Then we waited two more months until she was put in the helmet. She's been in the same one all this time. We were told that babies head growth slows down around one year of age and if she were a couple months older, they wouldn't even attempt helmet treatment. This is also why it is taking so long to reshape. It had gotten so severe her whole left side of her face was shifted forward along with her ear, which had also changed in shape. All my pictures are at my home computer so I'll try to post some tonight. I didn't really take any of her for that reason so most of them are just

portraits, but you can still tell. Thanks again Jen! :)> > Hello everyone! My name is Marissa. I've never used a message board > > before and I've decided to join this one because the entire > treatment > > for my daughter's Plagiocephaly has been very frustrating and > > exhausting(which I know you all are also going through) and it's > > finally wearing me down. My daughter, Kaylee is 19 months old and > has > > been in a Hanger helmet for almost 9 months now. Basically the last > > few months

there has been only a small amount of progress, due to > her > > age. So we've been pushing for that last little bit. She will have > > some permanant deformation. I was just wondering if this happens to > a > > lot of people, where the diagnosis and treatment is started very > late?> > Anyways, I'm hoping this message board will help me feel a little > > better about all of it and give me some relief. I've read through > some > > of the messages and notice how welcoming and helpful everyone is > and I > > just think that's what we all need! :)> > Thanks and I look forward to meeting you all!> > Marissa> > (mom of Kaylee)For more plagio info

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Marissa,

Where are you located? The Hanger band is approved for use in infants up to 18 months of age so starting after 1 year is normal . We have quiet a few members whose kids were banded past one year. Also, Cranial Tech will even band a 18 month old sine there product is approved up to 24 months.

Only having one band for so long does seem strange. I've heard of using them 6 months but usually they start to loose their holding power. So Kayless has been wearing hers for 7 months? What kind of physical therapy are you doing for her torticollis? Tort can cause even more asymmetry issues, especially in the face. Have you seen improvement in her headshape and tort in the past 9 months.

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.commarissa272 <jnknagel@...> wrote:

Thanks Jen! :)Well, Kaylee wasn't diagnosed with Torticollis and Plagiocephaly until she was 9 months old. We had been turned away by 6 different doctors (who all told us it would go away on it's own) before she was referred to a specialist. Then we waited two more months until she was put in the helmet. She's been in the same one all this time. We were told that babies head growth slows down around one year of age and if she were a couple months older, they wouldn't even attempt helmet treatment. This is also why it is taking so long to reshape. It had gotten so severe her whole left side of her face was shifted forward along with her ear, which had also changed in shape. All my pictures are at my home computer so I'll try to post some tonight. I didn't really take any of her for that reason so most of them are just

portraits, but you can still tell. Thanks again Jen! :)> > Hello everyone! My name is Marissa. I've never used a message board > > before and I've decided to join this one because the entire > treatment > > for my daughter's Plagiocephaly has been very frustrating and > > exhausting(which I know you all are also going through) and it's > > finally wearing me down. My daughter, Kaylee is 19 months old and > has > > been in a Hanger helmet for almost 9 months now. Basically the last > > few months

there has been only a small amount of progress, due to > her > > age. So we've been pushing for that last little bit. She will have > > some permanant deformation. I was just wondering if this happens to > a > > lot of people, where the diagnosis and treatment is started very > late?> > Anyways, I'm hoping this message board will help me feel a little > > better about all of it and give me some relief. I've read through > some > > of the messages and notice how welcoming and helpful everyone is > and I > > just think that's what we all need! :)> > Thanks and I look forward to meeting you all!> > Marissa> > (mom of Kaylee)For more plagio info

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Hi ! Yes, Kaylee has had good correction. Not as much as I'd

hoped for and you're right, not many people can notice it now. Her

ear is still shifted forward and when her hair is wet, you can see

the flat spot. Other than that, it's improved a lot. My biggest

frustration is that the doctors would not refer her until she was

almost 1. The cranialfacial specialist told us if she would have

been referred around two months of age, she could have started

therapy for the torticollis and it probably would have prevented the

Plagiocephaly. And now she's had to be in a helmet for 9 months,

just knowing it all could have been prevented makes me so angry!!

Anyways, I have posted pictures of her in the our plagio kids folder.

Thanks!

Marissa

(Kaylee, 19 months old, tort and plagio, Hanger helmet

> Hello everyone! My name is Marissa. I've never used a message

board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the

last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens

to a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need! :)

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

>

>

>

>

> For more plagio info

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Wow, it sounds like your getting a lot of services! That's wonderful! In my

opinion, that's probably enough professional speech treatment, you don't

want to burn him (or yourself) out. As far as more being done, as his mom,

you are probably going to be his best therapist, since you are with him

most. Learn as much as you can from the SLP and other resources so that you

can carry over activities to your daily life.

As far as the Kaufman Center, we just got back from a week-long program with

her. It was amazing and worth the travel!!

Best of luck!!

[ ] New to the group

> My son will be 3 next month. About 6 months ago he was

> diagnosed with apraxia by the speech therapist. We go 2 to 3 times a

> week for 1/2 hour and 2 days for 45 minutes. Do you thinks this is

> enough or more can be done? Has anybody heard of the Kaufman Center

> For Speech in Michigan. Any help will be greatly appreciated.

>

> sylvia

>

>

>

>

>

>

>

>

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hi sylvia- the person who knows the best and most appropriate amount of

treatment may be yours truly. the amount of services i understand is based on

the

severity of his speech problem, my son has a severe-profound speech language

disorder and we were just told in iowa city that he couldnt get too much speech

therapy- it sounds like you are getting alot of services. we get 2 hours a

week and we do speech therapy at home in the form of using the kaufman and

playing back recorded speech ssessions we tape at therapy-you can access nancy

kaufmans website on the computer and i would love to be evaluated there- her

flash

cards are great- i know it is costly and my insurance probably would not pay

for it- and i am in iowa although it would be a nice trip for our family-

charlotte henry

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Welcome to the list! There's lots of info in the files and FAQs. Do and

have any mercury amalgam dental fillings? When did the four

youngest last get vaccines? Are you a Rhogam Mom? Did the kids develop

normally and then regress?

S S

<tt>

Hi, my name is and hubby, Steve and I live in Baltimore<BR>

County, land...<BR>

We have His, Hers and Ours:<BR>

, my dd is 18 and has enlisted into the Army.<BR>

, his ds is 17 and resides with his mom.<BR>

, my dd is 13.5 and has the following dx: PDD, ADHD, OCD,<BR>

depression, a Mixed Receptive & Expressive Speech & Language Disorder,<BR>

a Severe Reading, Math & Language Disorder, an Auditory Processing<BR>

Disorder and a Sensorineural Hearing Impairment.<BR>

, my ds is 10.5 and has ADHD<BR>

Our twins, Stevie and Sammy are 1 and have severe global developmental<BR>

delays and ASD. They receive PT, OT and Teacher services through the<BR>

Infants and Toddlers Program.<BR>

We have joined several groups so we can begin the miraculous journey to<BR>

recovery. We know that and the twins have Mercury poisoning.<BR>

<BR>

<BR>

<BR>

</tt>

<br><br>

<tt>

=======================================================<BR>

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Welcome,

We bought the Leap frog ABC and Leap frog Word phonics and loves

them. He now can sound out all the individual sounds and he is trying the

blended

sounds now. We bought them at Walmart.

Take care,

Hope it helps.

Teri & , dx with motor planning apraxia, 4.5 now

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nkytwins wrote:

>

> do everything I can to help them out. Are there some things out there

> that people have had success with?

>

We had a lot of success with the handwriting without tears program. It

starts to show how letters are formed with wood pieces and then slowly

progresses to writing. http://www.hwtears.com/ You can order just

individual parts of the system and they aren't too expensive.

Another thing I have heard good things about is the fridge phonics toy

from Leapfrog

http://www.amazon.com/exec/obidos/ASIN/B000096QNK/104-0299830-0764762

It tells the letter with the proper sound not just the name of the

letter but the sound. Leapfrog also has a letter factory DVD if your

kids like videos.

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---They are slowly learning their letters and I'd like to

> do everything I can to help them out. Are there some things out

there

> that people have had success with?

Do they like the computer? If so, http://www.starfall.com is a great website

for

learning to read.

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  • 3 weeks later...
Guest guest

Welcome to the group! My doctor also put me off, be proud of

yourself for fighting for the prescription. I think you are making

the right choice for your daughter.

, Mom to Hunter, Hannah and Chase (Brachy, Plagio 7 mo)

Liberty, MO

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says

that it

> will round out and that the Doc band doesn't work. Well, I have

been

> researching and I beg to differ!!! I have been fighting doctors

and I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am

really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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Welcome to the group! My doctor also put me off, be proud of

yourself for fighting for the prescription. I think you are making

the right choice for your daughter.

, Mom to Hunter, Hannah and Chase (Brachy, Plagio 7 mo)

Liberty, MO

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says

that it

> will round out and that the Doc band doesn't work. Well, I have

been

> researching and I beg to differ!!! I have been fighting doctors

and I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am

really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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Hello and welcome to the group. It is so common that pediatricians

pass off Plagio and say " it will round out on its own " . It's a

shame. SOmetimes their heads do round out on their own, but

sometimes they do not. We were told that same thing at my Daughter's

2 mo check up. " don't worry about it " the Dr said. Well, the more I

thought about it, the more I DID worry. So, after seeing a

Neurosurgeon (who ALSO passed me off) and then seeing a craniofacial

surgeon and 2 Orthotists, we finally got the prescription and got

banded at 7mo 1wk. had a Hanger Cranial Band, which is

different than the DOC, but she had GREAT correction. (you can see

her pics under Before and After/Hanger Band/ V, if you would

like).

There are several people on her who had their kids banded around or

after 12 mo and still saw wonderful results! You are in great hands

at Cranial Tech. As far as Insurance, many times they deny the band

and you will have to appeal and fight for it, but sometimes they will

pay. There are planty of documents on here about appealing and

planty of members to give you advice about that too. My Daughter's

Hanger Band was covered by our Ins, but we have BC/BS of Rhode Island.

Anyway, good luck with Insurance and getting the band... You won't

regret it. :)

Jen :)

(10 mo), tort resolved, Hanger GRAD

(3 years)

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says that

it

> will round out and that the Doc band doesn't work. Well, I have been

> researching and I beg to differ!!! I have been fighting doctors and

I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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Hello and welcome to the group. It is so common that pediatricians

pass off Plagio and say " it will round out on its own " . It's a

shame. SOmetimes their heads do round out on their own, but

sometimes they do not. We were told that same thing at my Daughter's

2 mo check up. " don't worry about it " the Dr said. Well, the more I

thought about it, the more I DID worry. So, after seeing a

Neurosurgeon (who ALSO passed me off) and then seeing a craniofacial

surgeon and 2 Orthotists, we finally got the prescription and got

banded at 7mo 1wk. had a Hanger Cranial Band, which is

different than the DOC, but she had GREAT correction. (you can see

her pics under Before and After/Hanger Band/ V, if you would

like).

There are several people on her who had their kids banded around or

after 12 mo and still saw wonderful results! You are in great hands

at Cranial Tech. As far as Insurance, many times they deny the band

and you will have to appeal and fight for it, but sometimes they will

pay. There are planty of documents on here about appealing and

planty of members to give you advice about that too. My Daughter's

Hanger Band was covered by our Ins, but we have BC/BS of Rhode Island.

Anyway, good luck with Insurance and getting the band... You won't

regret it. :)

Jen :)

(10 mo), tort resolved, Hanger GRAD

(3 years)

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says that

it

> will round out and that the Doc band doesn't work. Well, I have been

> researching and I beg to differ!!! I have been fighting doctors and

I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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Hi,

Welcome to the group! Good for you for being so proactive in getting

your baby treatment. My baby was DOCbanded at an " older " age too.

She received awesome correction from her DOCband. Has your baby been

casted yet?

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says that

it

> will round out and that the Doc band doesn't work. Well, I have been

> researching and I beg to differ!!! I have been fighting doctors and

I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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Hi,

Welcome to the group! Good for you for being so proactive in getting

your baby treatment. My baby was DOCbanded at an " older " age too.

She received awesome correction from her DOCband. Has your baby been

casted yet?

> Hello!

>

> I am new to the group. My daughter Briley just turned 11 months old

> this week and she has plagiocephaly. I have been asking her

> pediatrican about her head ever since she was born and he says that

it

> will round out and that the Doc band doesn't work. Well, I have been

> researching and I beg to differ!!! I have been fighting doctors and

I

> finally got a prescription for my daughter and we went to Cranial

> Technologies here in Arizona and she is a good canidate for the

> Docband. I am so excited that I finally got someone to listen to me

> and at the same time upset with my self for not fighting sooner.

> Right now I am waiting for my insurance (Aetna EPO) to accept her.

Has

> anyone had problems with Aetna? Are they pretty quick with giving

> answers? I really hope they do soon because I want Briley to start

> soon so that we can get her head back to a normal shape. I am really

> worried about her being older and the Docband not being able to

> correct her head a lot. I hope it turns out well.

>

> Thanks!!

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  • 2 weeks later...
Guest guest

,

I think many of us are in the same boat you are. Our pediatrician

did the same thing, telling us to just reposition him. Never

mentioning the word plagiocephaly. I felt the same way as you, if I

had just been told the term, i would have immediately gone online

and found out about it. My son is going to be 8 months next week

when he finally gets his STARband. I'm glad we're finally getting

it and are able to do something about it. It's funny because now

that he's getting it, I'm telling more people about it and they

say " Ya, I did notice his head shape " . But they only wanted to say

something about it after I brought it up, instead of them bringing

it up to me.

Keep us posted on his progress. I'm pretty new to this group as

well (about a week or two) and it's been great so far. Any

questions I ask are answered right away by someone who has been

there before.

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is

almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at

the

> time, we just thought it was normal and would round out). His

flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that

she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process

has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us

parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Guest guest

,

Welcome. Firts of all is such a cutie. He looks like a little

man sitting on the couch with his legs crossed,lol. Unfortunately

most parents here have been through the same experience as you have.

Hopefully we will get the word out enough to change the way things

are. I am glad that likes his band. Feel free to ask questions

and vent frustrations all you want. We will be here to support you,

CAROLG

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at the

> time, we just thought it was normal and would round out). His flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Guest guest

Hi and welcome,

is adorable! His band looks like a great fit too! Good luck!

Natasha

Atlanta, GA

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is

almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at

the

> time, we just thought it was normal and would round out). His

flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that

she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process

has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us

parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Guest guest

Hi ,

Welcome to the group! is a doll, thanks for sharing w/us. Keep

us posted on his progress.

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at the

> time, we just thought it was normal and would round out). His flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Guest guest

Hi ,

Welcome to the group! is adorable in his Starband! You are so

lucky that the strap is colored. My Sophie has been in a Starband

since 5/11. Six weeks tomorrow!!! Your pediatrician story sounds so

much like mine. It's sad. Are you seeing a lot of change these past

5 weeks with his band? Thanks for posting your pictures.

Sophie 9 1/2 months Starband 5/11

Tort/Plagio

Michigan

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at the

> time, we just thought it was normal and would round out). His flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Guest guest

Hello and welcome to the group. It is true that MANY (probably

MOST!) peds pass off the parents and we, as theparents, have to fight

to get the referral, prescription, etc. It's very sad. There have

been many kids who were banded at 10 mo(or later) and still saw great

correction. You are doing the best thing for him! I'm glad that he

is doing well in his band.

Keep us updated

Jen :)

(10.5 mo), tort resolved, Hanger Band Grad

(3 years)

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at the

> time, we just thought it was normal and would round out). His flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Share on other sites

Guest guest

Hi ,

Your experience sounds very familiar - you are not alone! Your son

is such a cutie!!! My son also got his STARband at 9 months. He has

been in it exacly 2 months and we are seeing great results! I am

disappointed that we didn't start until so late, but I am happy that

I am doing something about it now. I hope that you are also seeing

good results with the helmet. Hang in there, the time just seems to

fly by. It seems like Jake just got his helmet, and already he will

be done with it in about 3-4 more weeks!!

, mom to Jake, 11 months

STARband 4/21 - plagio

Michigan

> Hello,

> I have been reading messages on this site for a couple of weeks,

but

> just finally got around to posting my own. My son, , is almost

> 10 months old and has been in a StarBand for 5 weeks now. He was

> born with mild plagio (although we didn't know it was plagio at the

> time, we just thought it was normal and would round out). His flat

> spot got worse as time went on even thought we constantly tried

> repositioning him, and then one day I noticed how misaligned his

> ears were. That was when I really started to worry that his head

> would not just " round out " on its own. Our pediatrician kept

> telling us to keep repositioning him and it would improve

> gradually. I started doing some research on my own and found that

> the " wait and see " approach isn't always the best option, and that

> if he did need a corrective helmet, we had already missed the best

> window of time for a shorter treatment (by this time he was almost

7

> months old!) I finally told our pediatrician that I couldn't just

> sit and wait anymore and that I wanted to do something about his

> head shape before it was too late. She did refer us to the

> neurosurgeon, and at that appointment, he told us that too many

peds

> wait too long before taking action with plagio babies. He also

> pointed out to us that she (our ped) had notes about 's plagio

> in his patient notes at his 2 MONTH CHECKUP!! I was upset that she

> never mentioned the word " plagiocephaly " to us that early on,

> because if I had known that his problem had an official name, I

> would have done some research sooner and pushed for treatment

> sooner. I guess my biggest frustration with this whole process has

> been the pediatrician's attitude, and the fact that I didn't know

> anything about plagiocephaly before it happened to our family.

This

> group has been wonderful just to know that there are so many other

> people going through this too. has been such a trooper. He

> does so well in his helmet, it's probably been harder on us parents

> than him. Oh, by the way, I did post some pictures of him

> under " ph " . I look forward to enjoying the insight

this

> group has to offer!

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Share on other sites

  • 2 weeks later...
Guest guest

Hi Sheena,

Welcome to the group! I'm so glad your here, it's so nice to see a

family member wanting to support and help their loved one. It would

be nice for her to join this group, it will help her so much. What

type of meds is she on? Do they seem to be helping?

With RA it's not so easy to do what your suppose to. It's very common

with a chronic disease that one needs some extra help. A lot of us go

through depression, it's just hard to cope. I'm sure you have

watched your sister go through many obstacles with this disease, and

it's so very hard. You let your sis know that we are here for her,

and would love to get to know her.

Hugs, Tawny

--- In , " theoraclelass " <sheena.paul@o...>

wrote:

> Hi,

> I joined the group to be able to understand and support my younger

> sister who is RA+ve since the last 10 years. She is on regular

> medication and has a set of excursive to be done regularly, which

she

> does not. She also is highly anxious person and has been through

> clinical depression last year.

>

> I did wish she would have joined a support group but since she did

not

> I decided to go ahead. Hoping that I too can be of support to her

and

> others who endure autoimmune diseases.

>

> Regards,

> Sheena

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Guest guest

Hi Sheena,

Welcome to the group! I'm so glad your here, it's so nice to see a

family member wanting to support and help their loved one. It would

be nice for her to join this group, it will help her so much. What

type of meds is she on? Do they seem to be helping?

With RA it's not so easy to do what your suppose to. It's very common

with a chronic disease that one needs some extra help. A lot of us go

through depression, it's just hard to cope. I'm sure you have

watched your sister go through many obstacles with this disease, and

it's so very hard. You let your sis know that we are here for her,

and would love to get to know her.

Hugs, Tawny

> Hi,

> I joined the group to be able to understand and support my younger

> sister who is RA+ve since the last 10 years. She is on regular

> medication and has a set of excursive to be done regularly, which

she

> does not. She also is highly anxious person and has been through

> clinical depression last year.

>

> I did wish she would have joined a support group but since she did

not

> I decided to go ahead. Hoping that I too can be of support to her

and

> others who endure autoimmune diseases.

>

> Regards,

> Sheena

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