New to this group!

[Guest guest]

Jess, Welcome to the grp! I am so happy you found it and you will be

too. My son also wore a STARband starting at 9 mos old. Have you

looked in our db to see if any past members used your

orthotist/provider? If you have found an experienced ortho you should

not have trouble w/fit issues. There *may* be some adjustment needed

in the first week or 2. My son was 9 mos and he didn't mind the helmet

from day 1. Slept in it fine by the 2nd or 3rd night. He is currently

the front page star so my story should post soon. :-) Please let us

know how things go. The scan will be so quick and easy. We are here

for you every step of the way.

Sue

Colin F., 19 mos.

STARband grad

brachy/rt plagio

Buffalo, NY

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in one

of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Jess, Welcome to the grp! I am so happy you found it and you will be

too. My son also wore a STARband starting at 9 mos old. Have you

looked in our db to see if any past members used your

orthotist/provider? If you have found an experienced ortho you should

not have trouble w/fit issues. There *may* be some adjustment needed

in the first week or 2. My son was 9 mos and he didn't mind the helmet

from day 1. Slept in it fine by the 2nd or 3rd night. He is currently

the front page star so my story should post soon. :-) Please let us

know how things go. The scan will be so quick and easy. We are here

for you every step of the way.

Sue

Colin F., 19 mos.

STARband grad

brachy/rt plagio

Buffalo, NY

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in one

of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Hi Jess,

Welcome to the group. Don't be afraid, we have lots of moms who have

used the Starband with excellent results.Take a look in the photo

section before and after folders under Starbands and you will see.

Most babies adjust really well after a few days, and sleep just fine.

Just remember to dress her lightly during the adjustment period. By

the way I love the name Isabella. Ask any questions you may have.

CAROLG

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in one

of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Hi Jess,

Welcome to the group. Don't be afraid, we have lots of moms who have

used the Starband with excellent results.Take a look in the photo

section before and after folders under Starbands and you will see.

Most babies adjust really well after a few days, and sleep just fine.

Just remember to dress her lightly during the adjustment period. By

the way I love the name Isabella. Ask any questions you may have.

CAROLG

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in one

of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Hi Jess,

Welcome to the group. We have a lot of STARband success stories We actually have very few ill fitting bands but they do get a lot of press because it takes some time to ge tthings worked out. It's very important to use an ortho that has experience. It's not unusual to need a few adjustments in the first couple weeks - you see a lot of that on the board too. Where are you going? Where are you from? My mom's family is from Bradner (Bowling Green - Wayne County area)

The STARband is manufactured by Orthomerica. They have a website www.orthomerica.com

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.com

jess_rn77 <jess_rn77@...> wrote:

Hi! My name is Jess and my daughter Isabella (7 months) has plagiocephaly and torticollis. I am from Ohio. I have an appointment to get her scanned on May 18th. I am just nervous about all the stories I've heard about helmits not fitting right. I am also nervous about how she will sleep after she starts to wear the helmit. She will be getting the Starband cranial remolding orthosis. If anyone has any advice please write me back. If any of you have their child in one of these helmits please let me know! Thanks!Jess mother of Isabella 7 months old, Northwest Ohio For more plagio info

[Guest guest]

Hi Jess,

Welcome to the group. We have a lot of STARband success stories We actually have very few ill fitting bands but they do get a lot of press because it takes some time to ge tthings worked out. It's very important to use an ortho that has experience. It's not unusual to need a few adjustments in the first couple weeks - you see a lot of that on the board too. Where are you going? Where are you from? My mom's family is from Bradner (Bowling Green - Wayne County area)

The STARband is manufactured by Orthomerica. They have a website www.orthomerica.com

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.com

jess_rn77 <jess_rn77@...> wrote:

Hi! My name is Jess and my daughter Isabella (7 months) has plagiocephaly and torticollis. I am from Ohio. I have an appointment to get her scanned on May 18th. I am just nervous about all the stories I've heard about helmits not fitting right. I am also nervous about how she will sleep after she starts to wear the helmit. She will be getting the Starband cranial remolding orthosis. If anyone has any advice please write me back. If any of you have their child in one of these helmits please let me know! Thanks!Jess mother of Isabella 7 months old, Northwest Ohio For more plagio info

[Guest guest]

Hi Jess,

Welcome to the group! We have lots of STARband success stories on

this board, with our current Front Page Star Colin being one of

them. Good luck with the scanning and fitting and be sure to keep

us posted on Isabella. I'd suggest visiting the STARband website

www.orthomerica.com to familiarize yourself w/what a proper fitting

STARband should look like. This will help you recognize a poor fit.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in

one of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Hi Jess,

Welcome to the group! We have lots of STARband success stories on

this board, with our current Front Page Star Colin being one of

them. Good luck with the scanning and fitting and be sure to keep

us posted on Isabella. I'd suggest visiting the STARband website

www.orthomerica.com to familiarize yourself w/what a proper fitting

STARband should look like. This will help you recognize a poor fit.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " jess_rn77 " <jess_rn77@y...>

wrote:

> Hi! My name is Jess and my daughter Isabella (7 months) has

> plagiocephaly and torticollis. I am from Ohio. I have an

appointment

> to get her scanned on May 18th. I am just nervous about all the

> stories I've heard about helmits not fitting right. I am also

nervous

> about how she will sleep after she starts to wear the helmit. She

will

> be getting the Starband cranial remolding orthosis. If anyone has

any

> advice please write me back. If any of you have their child in

one of

> these helmits please let me know!

>

> Thanks!

> Jess mother of Isabella 7 months old, Northwest Ohio

[Guest guest]

Hi there,

And welcome:) My name is a and I am also

relatively new to the group I signed up a few weeks or

so ago. I have 2 boys, also homeschooled ages 4 and 6.

6 yo is AS.

It's nice to have a space to be able to draw on the

wisdom of others and integrate new ideas.

See you around,

a

--- a_hoyt1979 <a_hoyt1979@...> wrote:

> Hi all! My name is Amy and I am mama to three, plus

> one on the

> way. My oldest is almost six and he's my little

> Aspie boy. I'm

> also married to an Aspie, so it gives me a lot of

> insight into what

> I want to make sure and work hard on with my little

> boy.

> I had thought that my little boy was special from

> the start. He's

> always been bright and advanced in fine motor skills

> and was

> speaking clear, consice sentances at 18 mo. He also

> loved to line

> up all his toy cars, was obsessed with the wheels on

> everything and

> didn't really follow along with the conversations of

> others. We

> lived in student family housing at the time, and I

> remember taking

> him to play at the playground and always feeling

> like I needed to be

> right with him all the time. I can't quite put my

> finger on it, but

> I think I instinctively knew that I needed to be the

> go-between

> between him and the other little kids.

> When he was two we moved from WA to AZ. We hadn't

> even thought to

> prepare a little two year old for a move. We didn't

> think it would

> be a big deal. Umm... wrong. He raged and raged

> and didn't sleep

> and was biting himself and banging his head and I

> thought I was

> going to go insane with the lack of sleep and

> inability to do

> anything to help my little boy. We took him to the

> Ped who took one

> look at him (crawling on the floor looking at the

> doc's shoes), and

> said " Well, he's autistic of course! " . He

> encouraged us to go to a

> neurologist, but the soonest we could get in was in

> 5 months, and we

> were moving in 2 (military). So, we were sent to a

> child psych. in

> the meantime. One session with him and he said,

> " No, this child is

> not autistic. He's has ADHD and severe sibling

> rivalry. Here's

> some ritalin and some sleeping pills. " *sigh*

> I was thankful for the sleeping aids. Just to get

> us over that hump

> we needed it. It allowed everyone to get some much

> needed sleep so

> we could appropriately deal with the rest of the

> day. The ritalin,

> on the other hand....the two days he was on it, he

> broke nearly all

> the dishes in the house and push over his bookcase

> and both his

> dressers (this is a 24 lb two year old!). So, we

> took him off the

> ritalin, and over a month's time weaned him off the

> sleeping pills.

> At this time I met some fantastic moms on-line who

> gave me some

> great encouragement and support. We changed his

> diet, did a lot of

> behavior modification and life was livable again.

> Next time we moved, we were sure to prepare him for

> it!

> For the next couple of years I searched and searched

> for something

> that would accurately describe my son, and finally

> stumbled across

> the term " Aspergers syndrome. " *Lightbulb!* This

> was it!! I

> actually heard a man speaking about being an adult

> with aspergers on

> NPR and thought, that's my husband! That's my son!!

> I hadn't

> realized that all these characteristics in my son

> were also the same

> in my husband, just at a more mature level!

> We are a homeschooling family who moves around a

> lot. My mom is a

> spec. ed teacher and has given me a lot of support

> and insight. I'm

> grateful to her for teaching me how to do social

> stories.

> I'm so proud of my little boy. He's come so far,

> and I know will

> continue to go far. The other day we were at the

> post office and he

> carried on a polite and appropriate conversation

> with the postal

> worker! Not even a year ago if we were in a store

> and someone would

> ask him what his name was, or what ever, he'd look

> at them as if

> they'd grown three heads!! We've worked hard on the

> art of

> conversation this past year. =)

> Sorry so long. I'm just happy to have found a group

> who deals with

> the same issues that we do. It's nice to have an

> understanding ear

> every now and then!

>

> Take care,

> Amy

>

>

>

>

__________________________________________________

[Guest guest]

Hi everyone. I am a friend of suenovember. I was diagnosed with CML one year

ago today! I knew for awhile something wasn't right with me, because I was

having dizzy spells, pressure and pain on left side(spleen, terrible fatigue,

and just a weak feeling. Finally, when I almost collapsed I went to hospital

and after blood test came back with extremely high WBC was immediately admitted.

I started on Gleevec for 9 months and basically I was just existing. I had

terrible side effects and spent must of my time in pajama's. After 9 months and

a second opinion from SC to NY Presbyterian I was tried on Tasigna. For me,

Tasigna is better then Gleevec, but still loads of side effects ,that affect my

everyday life. I no longer work, and have been trying to collect disability. I

had an initial denial, which I hear is not uncommon, and appealed that, and was

denied again, although my 5 dr's 3 onc, and two Gp's feel I am not capable of

working. I now have a lawyer, so we are waiting for a hearing which could take

up to another year. I was wondering besides the Leukemia Society are we

entitled to any other financial help? I have prescriptions for depression,

anxiety, and a few others and now that we are living on one income can not

afford all of this, but because we have insurance medicare will not help. I

also was notified that I am responsible for coming up with at least $800.00 for

my BMB scheduled July 13, and I just don't have the extra money in this economy,

and with losing an income. I would appreciate any suggestions, as I find myself

getting more depressed. My report from the Dr. said they felt I would be

resistant to drug therapy( I read this today).

Thank you all for listening and I look forward to keeping in touch.

Sincerely,

Peggy Becker