Re: Confused...what to do next

[Guest guest]

,

We were also sent to a specialist, a nuerologist, basically to get an MRI.

He was pretty much useless, had little experience with tort and had no clue

about the DOC band or plagio. We saw him literally for a 1/2 hour, he told

me how severe was, and to get an MRI and be on my way to pt. Didn't

help me find a pt, follow up, answer my questions, etc. I went to CT totally

on my own, and the first time they sent me home to repostion for a month to

exhaust that route. I went to my ped with my concerns at 4 months and she

wanted it to round out on its own, I didn't. I asked her for the referral

and at that point she was willing to do whatever I wanted. Now she tells me

everytime I see her, that I made the right decision to band. Each person has

a different experience about specialists and guidance from Doctors, so you

really have to size up your own circumstances and decide what your best route

would be to get what you want. The rx usually has to come from the ped, so

even if that is not what your ped wants, and you do, as a patient your child

has rights and you can request this (they may not give it to you, but you can

always call CT and ask what Doctors have they used in your area).

Good luck to you! Please keep us posted!

' Mom

[Guest guest]

R,

The StarBand and the DOC Band appear similar and can be trimmed to look

exactly the same. In fact, one can place them side by side and hardly

distinguish one from the other. The trim lines and design are dictated by

the resultant cranial shape desired. We used to represent the DOC Band in

Houston for many years and now use the StarBand EXCLUSIVELY in conjunction

with the StarScanner placed in the StarCoach. The ONLY one in the world and

the only scanner in Texas.

Good luck!! Check out www.medicalcenterbraceandlimb.com and see the newest

cutting edge technology for the remodeling orthoses.

Fain CPO

Confused...what to do next

> 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

>

>

>

>

> For more plagio info

[Guest guest]

Hi :

Just want to add one thing. My daughter's Cranial Osteopath wrote

the rx for the band, and that worked just fine. (He's a D.O.)

Just in case you might need it....

, Rhiannon's mom

> ,

> We were also sent to a specialist, a nuerologist, basically to get

an MRI.

> He was pretty much useless, had little experience with tort and had

no clue

> about the DOC band or plagio. We saw him literally for a 1/2 hour,

he told

> me how severe was, and to get an MRI and be on my way to

pt. Didn't

> help me find a pt, follow up, answer my questions, etc. I went to

CT totally

> on my own, and the first time they sent me home to repostion for a

month to

> exhaust that route. I went to my ped with my concerns at 4 months

and she

> wanted it to round out on its own, I didn't. I asked her for the

referral

> and at that point she was willing to do whatever I wanted. Now she

tells me

> everytime I see her, that I made the right decision to band. Each

person has

> a different experience about specialists and guidance from Doctors,

so you

> really have to size up your own circumstances and decide what your

best route

> would be to get what you want. The rx usually has to come from the

ped, so

> even if that is not what your ped wants, and you do, as a patient

your child

> has rights and you can request this (they may not give it to you,

but you can

> always call CT and ask what Doctors have they used in your area).

> Good luck to you! Please keep us posted!

>

> ' Mom

[Guest guest]

kelly

We were sent to see a craniofacial plastic surgeon who then wrote

the rx for Myas DOC band. Her ped couldnt write the rx so she sent

us to him. And he then sent us to CT. Myas ped had already had a

head ct done on Mya so cranio was already ruled out.

Christi mom to Mya

> > ,

> > We were also sent to a specialist, a nuerologist, basically to

get

> an MRI.

> > He was pretty much useless, had little experience with tort and

had

> no clue

> > about the DOC band or plagio. We saw him literally for a 1/2

hour,

> he told

> > me how severe was, and to get an MRI and be on my way to

> pt. Didn't

> > help me find a pt, follow up, answer my questions, etc. I went

to

> CT totally

> > on my own, and the first time they sent me home to repostion for

a

> month to

> > exhaust that route. I went to my ped with my concerns at 4

months

> and she

> > wanted it to round out on its own, I didn't. I asked her for the

> referral

> > and at that point she was willing to do whatever I wanted. Now

she

> tells me

> > everytime I see her, that I made the right decision to band.

Each

> person has

> > a different experience about specialists and guidance from

Doctors,

> so you

> > really have to size up your own circumstances and decide what

your

> best route

> > would be to get what you want. The rx usually has to come from

the

> ped, so

> > even if that is not what your ped wants, and you do, as a patient

> your child

> > has rights and you can request this (they may not give it to you,

> but you can

> > always call CT and ask what Doctors have they used in your area).

> > Good luck to you! Please keep us posted!

> >

> > ' Mom

[Guest guest]

:

If it were me, I would go for the CT evaluation and if they feel a band is needed, go to your ped. for the script. This will give you a jump-start on getting the ball rolling!

I would also see the specialist just to be sure. It would be beneficial to have a "trained eye", or even better, a CT scan just to be sure everything is OK. Don't let that worry you too much, as cranio is very rare in comparison to plagio, but of course it's best to be sure!

Kendra

Confused...what to do next

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 GrantFor more plagio info

[Guest guest]

Kendra, this is like what Nikki said, but are you suggesting we get the script and get things going with CT before we see the specialist...just to be sure? That might be the way to go, just so we don't lose time...if he needs to be treated by banding.

Kendra <p-nutsmum@...> wrote:

:

If it were me, I would go for the CT evaluation and if they feel a band is needed, go to your ped. for the script. This will give you a jump-start on getting the ball rolling!

I would also see the specialist just to be sure. It would be beneficial to have a "trained eye", or even better, a CT scan just to be sure everything is OK. Don't let that worry you too much, as cranio is very rare in comparison to plagio, but of course it's best to be sure!

Kendra

Confused...what to do next

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 GrantFor more plagio info

[Guest guest]

Can you tell me what a cranial osteopath is? Thanks!

stinamom21 <dweston6587@...> wrote: Hi :Just want to add one thing. My daughter's Cranial Osteopath wrote the rx for the band, and that worked just fine. (He's a D.O.)Just in case you might need it...., Rhiannon's mom> ,> We were also sent to a specialist, a nuerologist, basically to get an MRI. > He was pretty much useless, had little experience with tort and had no clue > about the DOC band or plagio. We saw him literally for a 1/2 hour, he told > me how severe was, and to get an MRI and be on my way to pt. Didn't > help me find a pt, follow up, answer my questions, etc. I went to CT totally > on my own, and the first time they sent me home to repostion for a month to > exhaust that route. I went to my ped with my concerns at 4 months and she > wanted it to round out on its own, I didn't. I asked her for the referral > and at that point she was willing to do whatever I wanted. Now she tells me > everytime I see her, that I made the right decision to band. Each person has > a different experience about specialists and guidance from Doctors, so you > really have to size up your own circumstances and decide what your best route > would be to get what you want. The rx usually has to come from the ped, so > even if that is not what your ped wants, and you do, as a patient your child > has rights and you can request this (they may not give it to you, but you can > always call CT and ask what Doctors have they used in your area).> Good luck to you! Please keep us posted!> > ' MomFor more plagio info

[Guest guest]

,

I would go to CT for the consultation, but also go for the appointment with

the specialist. I know that I really wanted to hear from the specialist that

it was not cranio and to hear his take on helmet therapy and possible side

effects from untreated plagio. Since you will have already been to CT you can

push the dr to write the RX for the DOCband.

That's just my take on it. Peds can write scripts for bands so if you feel

very strongly about getting started after your consult you could still go

that route at that time.

Good luck and let us know how it goes.

Marci (Mom to )

Oklahoma

[Guest guest]

That's exactly what I was saying, ! )

Get the ball rolling with a prescription from your ped, but keep the appt. with the specialist, just to be sure.

Let us know what you decide!

kendra

Confused...what to do next

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. & LAUNCH - Your Music Experience For more plagio info

[Guest guest]

:

Go to our bookmarks section (Plagiocephaly/links) and look for links for Cranial Osteopaths & Craniosacral Therapy.

Kendra

Re: Confused...what to do next

Can you tell me what a cranial osteopath is? Thanks! stinamom21 <dweston6587@...> wrote: Hi :Just want to add one thing. My daughter's Cranial Osteopath wrote the rx for the band, and that worked just fine. (He's a D.O.)Just in case you might need it...., Rhiannon's mom> ,> We were also sent to a specialist, a nuerologist, basically to get an MRI. > He was pretty much useless, had little experience with tort and had no clue > about the DOC band or plagio. We saw him literally for a 1/2 hour, he told > me how severe was, and to get an MRI and be on my way to pt. Didn't > help me find a pt, follow up, answer my questions, etc. I went to CT totally > on my own, and the first time they sent me home to repostion for a month to > exhaust that route. I went to my ped with my concerns LAUNCH - Your Music Experience For more plagio info