Confused...what to do next

May 17, 2002

I need your expertise here. As you know, I am just starting the

process of getting my son's plagio and tort treated. We have been

doing the exercises you all have helped me find here and they are

getting easier! He still prefers to turn that head of his to the

left, but will let me stretch it the other way without crying now.

Also, I've been putting him to sleep on his non tort side until he

can get treated. Of course, that really hasn't made any difference

in his head at all, probably because he's almost 8 months old, but it

makes me feel better that at least for now we're probably not making

the flat side flatter.

Well, as you probably also remember, my ped originally wanted us to

see Dr. Singhal at Children's Mercy here in KC. But, that doctor had

no availability until August 18th...way too long to wait. So, with

the help here, I found Dr. Witt from KU Med, who can see him on June

3rd. Upon your advice, I also called Rehab Designs of America here

in KC, which is a CT clinic. After playing phone tag, I got to speak

with Bob over at Rehab Designs. What a blessing it was to talk with

him. He spent 45 minutes on the phone with me! He gave me lots of

information and asked lots of questions about Grant. He promised to

get him in for a free consultation within 3 BUSINESS DAYS?! WOW! He

said he'd put a folder of articles and other information on plagio

and tort and they'd help me find a physical therapist for Grant. He

also said that if they didn't feel Grant needed to be banded, that

they would certainly tell me, but if he did need to be, that they

could provide information to my pediatrician in request of a

prescription direct from him.

I'm taking Grant in Monday for this free consultation. My husband

thinks Grant should still be seen by the specialist, Dr. Witt, since

my pediatrician wanted Grant to be seen by one. But, my pediatrician

is so lax on this whole issue, he's sending Grant to a specialist

because he doesn't deal with this...he's never acted like he thinks

Grant has craniosyntesis (sp?) or anything.

I guess I see a potential that if Grant needs to be treated he can

start this process a whole lot quicker if we go the CT route. Also,

I have to admit the more open design of the DOC band over the

STARband intrigues me. Also, it sounds like this group has been

doing this a LONG time.

I'm anxious to see how Grant's head rates, mild, moderate, severe,

etc. and to see the before and afters Bob said he's show me. He said

we'd also look at some castings for examples of different types of

plagio.

Sorry this is so long...but, what would you do?

1. Go to CT and if they say yes treat it, try to approach the ped

about writing the prescription himself? How is my ped going to react

to this? Any guesses? Any experience?

2. Go to CT and then wait to see the specialist, armed with another

opinion?

3. CT obviously uses DOCband and I know Dr Witt uses

STARband...anyone want to share opinions of one vs. another? (I did

see that fact sheet on the differences, just want personal opinions

maybe?)

Thanks!!!!

Love, R mom to Grant

May 17, 2002

-

I would go to CT. You can also keep your appointment with Dr. Witt

if you want . At least if you go to CT now and decide to go with

the DOC Band, you have that already done and he process will move

faster.

Dane never saw a specialist. I'm not saying that Grant doesn't need

to, it just wasn't something our ped said we needed to do because

she knew he didn't have cranio. His soft spot is still so big,

about a half dollar size! We can always see his pulse!

Debbie's daughter wore both a STAR Band and DOC Band. She is off

gambling, but can probably fill you in when she returns- as long as

she doesn't hit it big and runs to the Carribean! It at least

sounds like the STARBand orthotists know what they are doing where

you live, so that is a plus if you decide to go with them.

Dane's mom DOC Grad

> I need your expertise here. As you know, I am just starting the

> process of getting my son's plagio and tort treated. We have been

> doing the exercises you all have helped me find here and they are

> getting easier! He still prefers to turn that head of his to the

> left, but will let me stretch it the other way without crying

now.

> Also, I've been putting him to sleep on his non tort side until he

> can get treated. Of course, that really hasn't made any

difference

> in his head at all, probably because he's almost 8 months old, but

it

> makes me feel better that at least for now we're probably not

making

> the flat side flatter.

>

> Well, as you probably also remember, my ped originally wanted us

to

> see Dr. Singhal at Children's Mercy here in KC. But, that doctor

had

> no availability until August 18th...way too long to wait. So,

with

> the help here, I found Dr. Witt from KU Med, who can see him on

June

> 3rd. Upon your advice, I also called Rehab Designs of America

here

> in KC, which is a CT clinic. After playing phone tag, I got to

speak

> with Bob over at Rehab Designs. What a blessing it was to talk

with

> him. He spent 45 minutes on the phone with me! He gave me lots

of

> information and asked lots of questions about Grant. He promised

to

> get him in for a free consultation within 3 BUSINESS DAYS?! WOW!

He

> said he'd put a folder of articles and other information on plagio

> and tort and they'd help me find a physical therapist for Grant.

He

> also said that if they didn't feel Grant needed to be banded, that

> they would certainly tell me, but if he did need to be, that they

> could provide information to my pediatrician in request of a

> prescription direct from him.

>

> I'm taking Grant in Monday for this free consultation. My husband

> thinks Grant should still be seen by the specialist, Dr. Witt,

since

> my pediatrician wanted Grant to be seen by one. But, my

pediatrician

> is so lax on this whole issue, he's sending Grant to a specialist

> because he doesn't deal with this...he's never acted like he

thinks

> Grant has craniosyntesis (sp?) or anything.

>

> I guess I see a potential that if Grant needs to be treated he can

> start this process a whole lot quicker if we go the CT route.

Also,

> I have to admit the more open design of the DOC band over the

> STARband intrigues me. Also, it sounds like this group has been

> doing this a LONG time.

>

> I'm anxious to see how Grant's head rates, mild, moderate, severe,

> etc. and to see the before and afters Bob said he's show me. He

said

> we'd also look at some castings for examples of different types of

> plagio.

>

> Sorry this is so long...but, what would you do?

> 1. Go to CT and if they say yes treat it, try to approach the ped

> about writing the prescription himself? How is my ped going to

react

> to this? Any guesses? Any experience?

> 2. Go to CT and then wait to see the specialist, armed with

another

> opinion?

> 3. CT obviously uses DOCband and I know Dr Witt uses

> STARband...anyone want to share opinions of one vs. another? (I

did

> see that fact sheet on the differences, just want personal

opinions

> maybe?)

>

> Thanks!!!!

>

> Love, R mom to Grant

May 18, 2002

,

Wow!! Three business days, that is awesome! I think if I were in

your shoes, I would keep the appoinment with both RDA and Dr. Witt.

June 3rd is not that far away, and personally speaking, I liked

having a specialist tell me for sure that it wasn't cranio. Even

though I already knew it wasn't, it was for piece of mind that I

wanted a doctor to tell me. And if you decide to go with a DOCband,

I would think regardless of what your doctor usually refers people

to, he would have to give you a script for your product of choice.

Good luck , and let us know how it goes on Monday!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> I need your expertise here. As you know, I am just starting the

> process of getting my son's plagio and tort treated. We have been

> doing the exercises you all have helped me find here and they are

> getting easier! He still prefers to turn that head of his to the

> left, but will let me stretch it the other way without crying now.

> Also, I've been putting him to sleep on his non tort side until he

> can get treated. Of course, that really hasn't made any difference

> in his head at all, probably because he's almost 8 months old, but

it

> makes me feel better that at least for now we're probably not

making

> the flat side flatter.

>

> Well, as you probably also remember, my ped originally wanted us to

> see Dr. Singhal at Children's Mercy here in KC. But, that doctor

had

> no availability until August 18th...way too long to wait. So, with

> the help here, I found Dr. Witt from KU Med, who can see him on

June

> 3rd. Upon your advice, I also called Rehab Designs of America here

> in KC, which is a CT clinic. After playing phone tag, I got to

speak

> with Bob over at Rehab Designs. What a blessing it was to talk

with

> him. He spent 45 minutes on the phone with me! He gave me lots of

> information and asked lots of questions about Grant. He promised

to

> get him in for a free consultation within 3 BUSINESS DAYS?! WOW!

He

> said he'd put a folder of articles and other information on plagio

> and tort and they'd help me find a physical therapist for Grant.

He

> also said that if they didn't feel Grant needed to be banded, that

> they would certainly tell me, but if he did need to be, that they

> could provide information to my pediatrician in request of a

> prescription direct from him.

>

> I'm taking Grant in Monday for this free consultation. My husband

> thinks Grant should still be seen by the specialist, Dr. Witt,

since

> my pediatrician wanted Grant to be seen by one. But, my

pediatrician

> is so lax on this whole issue, he's sending Grant to a specialist

> because he doesn't deal with this...he's never acted like he thinks

> Grant has craniosyntesis (sp?) or anything.

>

> I guess I see a potential that if Grant needs to be treated he can

> start this process a whole lot quicker if we go the CT route.

Also,

> I have to admit the more open design of the DOC band over the

> STARband intrigues me. Also, it sounds like this group has been

> doing this a LONG time.

>

> I'm anxious to see how Grant's head rates, mild, moderate, severe,

> etc. and to see the before and afters Bob said he's show me. He

said

> we'd also look at some castings for examples of different types of

> plagio.

>

> Sorry this is so long...but, what would you do?

> 1. Go to CT and if they say yes treat it, try to approach the ped

> about writing the prescription himself? How is my ped going to

react

> to this? Any guesses? Any experience?

> 2. Go to CT and then wait to see the specialist, armed with

another

> opinion?

> 3. CT obviously uses DOCband and I know Dr Witt uses

> STARband...anyone want to share opinions of one vs. another? (I did

> see that fact sheet on the differences, just want personal opinions

> maybe?)

>

> Thanks!!!!

>

> Love, R mom to Grant

May 19, 2002

Hey !

I am sorry, I can't offer much good advice about your tort. issues,

my daughter never had tort.. I see you've already gotten some great

replies that I hope will help you!

I am happy to hear Bob from CT called you & you already have an appt

tomorrow (Mon) for your free eval!! That's terrific. They deal with

only plagio babies, they are VERY honest & will give you their honest

opinion. It wouldn't hurt for you to still see Dr. Witt for another

opinion. That's entirely up to you & your family. It sounds like

that's what your husband would feel more comfortable doing.

To make my super duper long story somewhat shorter, Abby first wore a

STARband unsuccessfully for about 3 mos. (age 8-11 mos). Abby's

STARband orthotist was not very well trained or experienced in

treating plagio babies.. Unfortunately Abby's STARband did more harm

than good to her pretty head as it " dented " in her skull a bit on

what was her non flat side of her head.

After that, we switched Abby into a DOCband. Abby's DOCband was

wonderful. She didn't begin treatment til 11.5 mos & we were still

able to get good correction of her severe plagio in 4.5 mos time.

Personally for us, the DOCband was better than her STARband.

Good luck tomorrow at Cranial Tech., is it a long drive to their

clinic for you? I remember you're both in KC so I can't imagine it's

long at all - GREAT!

Please let us know how it goes.

Debbie Abby's mom DOCgrad

MI