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--- In Plagiocephaly , Wangerien She had TWO

Broken bones in her leg !!

> :-( She fractured her tibia and her femur :-( So got a

purple cast

> on her leg (to match her purple butterflys on her helmet ;-)

How ironic! broke her leg and got her cast off yesterday

(I'm sure can fill you in). Those two banded and casted

beauties should have gotten together for a picture!

Hope Spring brings better luck for you!

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Hi Bill & Dee!

First, the good news - Congradulations on 's graduation!!!

Hooray, it doesn't seem like she was in her band long at all! I'm so

happy she's done & rec'd good correction.

Next, the not so good news...geez oh pete! It certainly has been a

rough period for the little tike! Ouch, 2 broken bones, the flu, ear

infections & a sore throat? My goodness, i hope she gets over

everything asap & her leg heals quickly. Geez :(

Hugs for a happy & healthy March!

Debbie Abby's mom DOCGrad

MI

> I have been very lax in reporting 's progress (but with good

reason :-)

>

> We just had or final visit with out Ortho today !! officially

> graduated from her StarBand !! She had been wearing it only at

night for

> the past two weeks to see if she would regress at all (and she didn't

> !) The Neurosurgeon took a look at her scans and gave us the all

clear. We

> are very happy with 's nice round head, hehe.

>

> We are also happy to have one less thing to deal with (her helmet.)

It has

> been a rough month for our little girl. She had mild pneumonia six

weeks

> ago. Once she got over that, she had an ear infection and sore

throat. Just

> as she was starting to feel like her old self, Mommy and

slipped on

> some Ice on the porch and fell down the stairs !! screaming her

> head off, so we took her to the ER. She had TWO Broken bones in her

leg !!

> :-( She fractured her tibia and her femur :-( So got a

purple cast

> on her leg (to match her purple butterflys on her helmet ;-) She was

> starting to get used to her cast and getting around again, then she

got a

> stomach bug from the kids at school. So she threw up all night

Wednesday,

> and has not been a happy camper Thursday and Friday. She has the most

> pathetic look on her face, as opposed to her usual happy self.

>

> At least she doesn't have to deal with the StarBand any more, and we

saw

> the " Leg Doctor " today too, and her leg is healing very nicely :-)

> will get her cast off in two weeks. Hopefully that will be the last

of her

> Doctor visits for a long time, haha.

>

> Sorry to ramble :-) Take care !! Bill, Dee, &

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,

It sounds like you found out it was the 'fruity' enzymes. The No-

Fenol may help with that, and it doesn't contain any of those. If

you are interested in a broad-spectrum product that doesn't have

fruity-zymes, Enzymedica has a few to choose from (Carbo, Digest

Gold). Or you may find increasing the NF with the other enzymes

helps.

>>>I didn't have any test done but I suspected a yeast problem for a

few reasons (alway scratching her bottom, redness around there, rash

on her body especialy her inner elbow creases that only miconazole

nitrate would kill).

Sounds like yeast to me. I was told there is no a definitive yeast

test anyway and you should go by reactions and a positive response

to yeast treatment.

Very good to hear about 's improved behavior. She must be

feeling better.

.

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Hi

there! I’m new to the group but

just wanted to say congratulations on a success graduation! It sounds as though the STARband worked

very well for you…I’m so glad to hear another positive outcome with the

helmets. On another note, I can’t

believe everything you’ve had to deal with all at once…I sure hope that life calms

down a bit!

Take care!

& JD (DOCband since 2/26)

TX

-----Original

Message-----

From: Wangerien

[mailto:billmdee@...]

Sent: Saturday, March 01, 2003

2:30 AM

plagiocephaly

Subject: Update on

I have been very lax in reporting 's progress (but with good

reason :-)

We just had or final visit with out Ortho today !! officially

graduated from her StarBand !! She had been wearing it only at

night for

the past two weeks to see if she would regress at all (and she didn't

!) The Neurosurgeon took a look at her scans and gave us the all

clear. We

are very happy with 's nice round head, hehe.

We are also happy to have one less thing to deal with (her helmet.)

It has

been a rough month for our little girl. She had mild pneumonia six

weeks

ago. Once she got over that, she had an ear infection and sore throat. Just

as she was starting to feel like her old self, Mommy and slipped on

some Ice on the porch and fell down the stairs !! screaming

her

head off, so we took her to the ER. She had TWO Broken bones in her leg !!

:-( She fractured her tibia and her femur :-( So got a

purple cast

on her leg (to match her purple butterflys on her helmet ;-) She was

starting to get used to her cast and getting around again, then she got a

stomach bug from the kids at school. So she threw up all night Wednesday,

and has not been a happy camper Thursday and Friday. She has the most

pathetic look on her face, as opposed to her usual happy self.

At least she doesn't have to deal with the StarBand any more, and we saw

the " Leg Doctor " today too, and her leg is healing very nicely

:-)

will get her cast off in two weeks. Hopefully that will be the last

of her

Doctor visits for a long time, haha.

Sorry to ramble :-) Take care !!

Bill, Dee, &

For more plagio info

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Mimi,

Glad your sticking with us! Are they saying that because of the brain damage it would be too much pressure using the band? I know that the direct pressure is very minimal, but there are passive bands as well that do not apply any pressure, just let the head shape grow into the round helmet shape. Keep us posted, we'd love to help if we can!

' Mom

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Hi Mimi,

I'm not sure I understand what you mean by it's too severe to

correct. How old is now? I'm glad your going to stay on baord!

> I just wanted to let you all know that we have come to the

conclusion that

> plagio is too severe to correct. We knew that this was

coming, but I

> guess I just did not want to believe it. I am ok with this,

because of the

> fact that he does have other conditions and his plagio is really

the mild one

> out of everything else that he is going through. I am choosing to

stay on

> the list if that is ok. You all are such a great support!

> Hugs to all~

> mimi

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My Jenna was classified as moderate to severe. She started her

STARband at 9 months and 1 week. Shhe still received 80% in 12

weeks.

Angie

> I just wanted to let you all know that we have come to the

conclusion that

> plagio is too severe to correct. We knew that this was

coming, but I

> guess I just did not want to believe it. I am ok with this,

because of the

> fact that he does have other conditions and his plagio is really

the mild one

> out of everything else that he is going through. I am choosing to

stay on

> the list if that is ok. You all are such a great support!

> Hugs to all~

> mimi

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Hi Mimi:

I too am confused, does that mean you won't be banding ? I

don't think any plagio is " too severe " to correct, especially if

banded.

I am glad you'll be sticking with us!

Debbie Abby's mom DOCGrad

MI

>

> > I just wanted to let you all know that we have come to the

> conclusion that

> > plagio is too severe to correct. We knew that this was

> coming, but I

> > guess I just did not want to believe it. I am ok with this,

> because of the

> > fact that he does have other conditions and his plagio is really

> the mild one

> > out of everything else that he is going through. I am choosing

to

> stay on

> > the list if that is ok. You all are such a great support!

> > Hugs to all~

> > mimi

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Mimi, I'm so sorry to hear about this! I wish you luck and will keep

you and your family in my prayers.

Dustie

> I just wanted to let you all know that we have come to the

conclusion that

> plagio is too severe to correct. We knew that this was

coming, but I

> guess I just did not want to believe it. I am ok with this,

because of the

> fact that he does have other conditions and his plagio is really

the mild one

> out of everything else that he is going through. I am choosing to

stay on

> the list if that is ok. You all are such a great support!

> Hugs to all~

> mimi

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  • 3 weeks later...
Guest guest

Terri I am glad things are moving so quickly for you and ! She will be done before you know it! I'm glad you are feeling better about it too! She looks wonderful!

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

Update on

Hello all!We saw our cranio-facial surgeon yesterday for the first follow-up since was banded on 2/21/03. As some of you know, our orthotist saw her on Monday and said her correction was amazing after only 4 weeks and that she thought could be finished at any time. We decided to wait and see what our doctor said and go from there. He looked at her yesterday and was very pleased with her rounding, but recommended continuing for another month or so. I was not too surprised since we had only been in the helmet for 4 weeks! He thought we could get some more improvement in her forehead. She has slight bossing in the left. I posted a picture of her head after 4 weeks in her folder (ANNA) so if you want you can check it out to see how amazing these bands really are! I just wanted to let all of you know how great we are doing. I think I have finally turned the corner myself this past week and am feeling much better emotionally about the whole thing. I really struggled at first, but now I am so very glad that we did this for our daughter. Thanks for all your kind words and thoughts over the past few weeks.Teri & , 8 1/2months (STAR band 2/21/03)For more plagio info

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Teri,

Sounds like a good appointment. Four weeks is a pretty short

period to get all the correction possible. Since your band still has

wear left and there is still some correction to be had I'd say

keeping after it is a good idea. I'm glad you are feeling better

about the whole - it will be over before you know it!

Marci (Mom to )

Oklahoma

> Hello all!

>

> We saw our cranio-facial surgeon yesterday for the first

follow-up

> since was banded on 2/21/03. As some of you know, our

> orthotist saw her on Monday and said her correction was

amazing

> after only 4 weeks and that she thought could be finished

at

> any time. We decided to wait and see what our doctor said

and go

> from there. He looked at her yesterday and was very pleased

with

> her rounding, but recommended continuing for another month

or so. I

> was not too surprised since we had only been in the helmet for

4

> weeks! He thought we could get some more improvement in

her

> forehead. She has slight bossing in the left. I posted a picture

> of her head after 4 weeks in her folder (ANNA) so if you want

you

> can check it out to see how amazing these bands really are!

>

> I just wanted to let all of you know how great we are doing. I

> think I have finally turned the corner myself this past week and

am

> feeling much better emotionally about the whole thing. I really

> struggled at first, but now I am so very glad that we did this for

> our daughter. Thanks for all your kind words and thoughts over

the

> past few weeks.

>

> Teri & , 8 1/2months (STAR band 2/21/03)

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Hi Teri:

Wow, I can definitely see good improvement already! You must've

caught her just in time for a growth spurt!

As long as the band is still fitting her, I'd keep it on her too. I

can still see some ear misalignment (has certainly improved), often

those take longer to correct, so you might as well get more bang for

your buck!

She's looking great :) Love the pink band too, very nice job!

Debbie abby's mom DOCGrad

MI

--- In Plagiocephaly , " banmat_03 " <banmat_03@y...>

wrote:

> Hello all!

>

> We saw our cranio-facial surgeon yesterday for the first follow-up

> since was banded on 2/21/03. As some of you know, our

> orthotist saw her on Monday and said her correction was amazing

> after only 4 weeks and that she thought could be finished at

> any time. We decided to wait and see what our doctor said and go

> from there. He looked at her yesterday and was very pleased with

> her rounding, but recommended continuing for another month or so.

I

> was not too surprised since we had only been in the helmet for 4

> weeks! He thought we could get some more improvement in her

> forehead. She has slight bossing in the left. I posted a picture

> of her head after 4 weeks in her folder (ANNA) so if you want you

> can check it out to see how amazing these bands really are!

>

> I just wanted to let all of you know how great we are doing. I

> think I have finally turned the corner myself this past week and am

> feeling much better emotionally about the whole thing. I really

> struggled at first, but now I am so very glad that we did this for

> our daughter. Thanks for all your kind words and thoughts over the

> past few weeks.

>

> Teri & , 8 1/2months (STAR band 2/21/03)

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Wow Teri! I am so impressed with her correction in only 4 weeks!

Sounds like you have a great dr and a great ortho! You are in KC,

right?

4 weeks will FLY by!

Dane's mom DOC Grad

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Hi Teri-

She looks great! You must be so happy with the progress, only a few

more short weeks to go!

Janine & Isabella (banded 1/31/03 at 8 months)

Boston

--- In Plagiocephaly , " banmat_03 " <banmat_03@y...>

wrote:

> Hello all!

>

> We saw our cranio-facial surgeon yesterday for the first follow-up

> since was banded on 2/21/03. As some of you know, our

> orthotist saw her on Monday and said her correction was amazing

> after only 4 weeks and that she thought could be finished at

> any time. We decided to wait and see what our doctor said and go

> from there. He looked at her yesterday and was very pleased with

> her rounding, but recommended continuing for another month or so.

I

> was not too surprised since we had only been in the helmet for 4

> weeks! He thought we could get some more improvement in her

> forehead. She has slight bossing in the left. I posted a picture

> of her head after 4 weeks in her folder (ANNA) so if you want you

> can check it out to see how amazing these bands really are!

>

> I just wanted to let all of you know how great we are doing. I

> think I have finally turned the corner myself this past week and am

> feeling much better emotionally about the whole thing. I really

> struggled at first, but now I am so very glad that we did this for

> our daughter. Thanks for all your kind words and thoughts over the

> past few weeks.

>

> Teri & , 8 1/2months (STAR band 2/21/03)

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  • 2 weeks later...
Guest guest

hi brock, sorry to hear your news about hayes. my 2 and 1/2 year old tom was dx

as speech and language delayed. both my husband and i worry that he may in fact

be autistic. he is bright, loving and communicative...he is also nonverbal.

his ST thinks he too may have apraxia but , like hayes, she can't be sure until

he starts to talk. even without the autism diagnosis, we forged ahead with an

intervention program based on dr. greenspan's floortime. we have also started

supplements such as omega three fatty acids and b-6. in two months, we have

seen a great deal of improvement in cognitive understanding and babbling. he

still has no words but as long as we see progress, we remain hopeful we are

doing the right thing. anyway, i wasn't sure how old your hayes is, but if you

want any more info on what we have been doing, let me know. one question, does

hayes use his tongue to lick. my tom doesn't. you have the right attitude i

think - time to roll up the sleeves. good luck. laura

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

Well, It has been a long time since I have posted, but

still reading all posts.

We saw the peds neuro yesterday. I fell in love with

her. She was wonderful with him. Although I did feel

like I was being drilled. She asked every question you

could possibly imagine-back for three generations.

Although I have known for a few months that was

" possibly " autistic(high functioning), hearing the

words come from her where haunting. I am glad that I

know " officially " and I can get moving on more

therapy(Insurance bullcrap). Maybe they will now pay

for therapy.

I have cried since she told me, and when I think I'm

going to be okay, someone calls to tell me that it

will be okay and I start all over again.

I am so scared for him. But I do know that I am a

strong person and I will do my best to make his life

as close to " normal " as possible. He is such a bright

little boy. He seems to be above average in intellect.

She also said that he could have some apraxia, but it

was too soon to tell because he is non-verbal as the

most part. We will have to wait and see if & when he

says two to three word sentences.

But for now, I will continue to do more research on

how to help him. It is hard at times-as he is one of

three. I do have GOD on my side, so I can do anything.

Thanks in advance for any help or advice you can give

me,

Brock

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I will pray for you son as I know how it feels to cry everytime that I think

about my son and his apraxia and how it will affect the rest of his life.

Take care and remember that it is in God's time not ours.

Vicki in MN son 4 verbal apraxia.

[ ] Update on

Well, It has been a long time since I have posted, but

still reading all posts.

We saw the peds neuro yesterday. I fell in love with

her. She was wonderful with him. Although I did feel

like I was being drilled. She asked every question you

could possibly imagine-back for three generations.

Although I have known for a few months that was

" possibly " autistic(high functioning), hearing the

words come from her where haunting. I am glad that I

know " officially " and I can get moving on more

therapy(Insurance bullcrap). Maybe they will now pay

for therapy.

I have cried since she told me, and when I think I'm

going to be okay, someone calls to tell me that it

will be okay and I start all over again.

I am so scared for him. But I do know that I am a

strong person and I will do my best to make his life

as close to " normal " as possible. He is such a bright

little boy. He seems to be above average in intellect.

She also said that he could have some apraxia, but it

was too soon to tell because he is non-verbal as the

most part. We will have to wait and see if & when he

says two to three word sentences.

But for now, I will continue to do more research on

how to help him. It is hard at times-as he is one of

three. I do have GOD on my side, so I can do anything.

Thanks in advance for any help or advice you can give

me,

Brock

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  • 4 months later...

Glad to hear that is adjusting to his band :o) Xavier has toms

of hair too and he is also balding but I dont think it has to do with

the band. Jaxon my older son that was not banded also lost most of

his hair.

Donna and Xavier DOCband 7/25

In Plagiocephaly , " cathynugz " <cathynugz@y...> wrote:

> Hello all. How is everyone? We are doing great. I think after 3

> weeks with the band is finally getting used to it. It must

> itch though cause when we take it off he just scratches his head

> like crazy. Also, he is balding a little on one side. I guess

that

> is normal since he has a lot of hair! We have decided that we are

> moving to Chicago so we are changing CT sites soon. I hope

everyone

> at the Oakbrook office is as friendly as everyone in the ndale,

> Va. office.

>

> Have a wonderful night,

> , momma of

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Hi :For like the 1st month or so in Abby's band, when the band would be off, she too would itch it like a madwoman or rub up against the back of her highchair, whatever she could find!!! That eventually stopped though :)Glad he's finally adjusting to it. Congrats on the upcoming move to Chicago!! Yikes, scary yet exciting at the same time. Rest assured though, will be in more than capable hands w/the great ladies at the Oakbrook CT, kay is still there & she was terrific w/Abby & I :)

Keep us posted.

Debbie Abby's momMIDonna <djs611@...> wrote:

Glad to hear that is adjusting to his band :o) Xavier has toms of hair too and he is also balding but I dont think it has to do with the band. Jaxon my older son that was not banded also lost most of his hair. Donna and Xavier DOCband 7/25In Plagiocephaly , "cathynugz" <cathynugz@y...> wrote:> Hello all. How is everyone? We are doing great. I think after 3 > weeks with the band is finally getting used to it. It must > itch though cause when we take it off he just scratches his head > like crazy. Also, he is balding a little on one side. I guess that > is normal since he has a lot of hair! We have decided that we are > moving to Chicago so we are changing CT sites soon. I hope everyone > at the Oakbrook office is as

friendly as everyone in the ndale, > Va. office. > > Have a wonderful night,> , momma of For more plagio info

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, I'm so glad is doing well. Congrats on the move!! I've

heard wonderful things about CT in Chicago. Let us know how things

are going.

Dustie-

-- In Plagiocephaly , " cathynugz " <cathynugz@y...>

wrote:

> Hello all. How is everyone? We are doing great. I think after 3

> weeks with the band is finally getting used to it. It must

> itch though cause when we take it off he just scratches his head

> like crazy. Also, he is balding a little on one side. I guess

that

> is normal since he has a lot of hair! We have decided that we are

> moving to Chicago so we are changing CT sites soon. I hope

everyone

> at the Oakbrook office is as friendly as everyone in the ndale,

> Va. office.

>

> Have a wonderful night,

> , momma of

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Patty,

My fingers are crossed for you! Let us know how he does tonight.

--- In Plagiocephaly , " pattypmw " <pattypmw@y...>

wrote:

> Hi!

> Just wanted to update everyone on .(DOCbanded on Fri) He did

> well on Fri and sat. The red spots went away within an hour. But

> when i checked him on sun. morn he had large redspot on the back of

> his head and a large red area over his right eye. His eye also was

> tearing. The spots lightened but did not disappear. I thought it

> might be a heat rash. The spots were gone this morn. Charlotte told

> me to try the band again. Today he did well, no red spots.

> Hopefully, he does well tonight! I'm keeping my fingers crossed!

> Thank you for the good thoughts and advice, it has been very

helpful!

> :)

> Patty from NJ

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Patty-

Yeah! Sounds like is doing well and your keeping a watchful eye on any red spots. My son's band made his eyes a little swollen- there is some fluid retention going on, and it didn't last long. Keep us posted and wishing you continued success!

' mom

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Hi Patty:Great! Things are going well then. Sounds like the red spots are cleared, knock on wood :) He's rounding as we speak.

Debbie Abby's mom DOCgrad

MIpattypmw <pattypmw@...> wrote:

Hi!Just wanted to update everyone on .(DOCbanded on Fri) He did well on Fri and sat. The red spots went away within an hour. But when i checked him on sun. morn he had large redspot on the back of his head and a large red area over his right eye. His eye also was tearing. The spots lightened but did not disappear. I thought it might be a heat rash. The spots were gone this morn. Charlotte told me to try the band again. Today he did well, no red spots. Hopefully, he does well tonight! I'm keeping my fingers crossed!Thank you for the good thoughts and advice, it has been very helpful!:)Patty from NJ For more plagio info

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  • 3 weeks later...

What great news! I am so happy for you and !!! Please let us know when it is official!

Angie and Jenna

Update on

Hi all. I am sorry that I have not been here in a while, been so busy with the move to Chicago. We had an appointment today and there is good news! 's head is almo0st normal!!! Only one more week in the DoC band and he is done!!!!!! I never thought that the band would impove his head as much as it did. That was 3000 dollars very well spent. Thank you all for your support in this very frustrating time. momma of For more plagio info

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