new to the group

May 9, 2005

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

May 9, 2005

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

May 9, 2005

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

May 15, 2005

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

>

May 16, 2005

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

May 19, 2005

Welcome here too. Kathy Hybl

May 20, 2005

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

County, land...

We have His, Hers and Ours:

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

, his ds is 17 and resides with his mom.

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

depression, a Mixed Receptive & Expressive Speech & Language Disorder,

a Severe Reading, Math & Language Disorder, an Auditory Processing

Disorder and a Sensorineural Hearing Impairment.

, my ds is 10.5 and has ADHD

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

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

Infants and Toddlers Program.

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

recovery. We know that and the twins have Mercury poisoning.

</tt>

<tt>

=======================================================

May 21, 2005

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

May 21, 2005

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.

May 21, 2005

---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.

June 6, 2005

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!!

June 6, 2005

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!!

June 6, 2005

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!!

June 6, 2005