Re: Re: Another update on Kailey

[Guest guest]

:

Your call to CT should help a lot. They do have a separate band for brachy

so that will help. I hope you can get the CT as soon as possible so this

doesn't drag out any longer. We had x-rays to rule out cranio. I know

doctors use both x-ray and CT (with CT offering the best view). Maybe x-ray

would have a shorter waiting time (no sedation needed).

Best of luck, keep us posted,

Sue

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

From: Aschton <aschton@...>

<Plagiocephalyegroups>

Sent: Saturday, August 26, 2000 1:03 AM

Subject: Re: Another update on Kailey

>

> Hi Sue !

>

> I'm not sure exactly what I have from my Dr. !! The last time we saw

> her she did the whole 'wait and see' routine because she was almost 5

> mos. then and not too bad. Now at almost 8mos. old ( Sept. 1) she

> says " ok, she's gotten worse, but she's getting too old,but if you do

> nothing she'll NEVER get any better " , She contradicted herself over

> EVERY single thing she told us earlier (Bi -polar , maybe ?).

>

> Then she wrote on a prescription pad " DOC band evaluate, fit & treat "

> and told me to call CT in Atlanta AFTER we got a CT scan and had

> those films sent to her (no reports, just films). and THEN she would

> call me with the go ahead or not. Ok fine , but the Army hospital

> here told me today that they have a VERY LONG wait list for CT's and

> the fact that Kailey has to be sedated could mean a longer wait.

> Tricare was closed by the time I got off the phone, but I think there

> is a policy here that could get me covered if I go to a Civvy

> hospital since there's a wait - I'll be calling on Monday !!!!

>

> I'm glad to have the 'prescription' , but am I supposed to just go to

> CT with that ? Surely not. Oh ! She also said we will be in the

> band about 4-5 mos for brachy. - Is that about right ? I asked her

> if the band would make the brachy worse and she said 'No', but Kendra

> said CT has a Brachy band - will CT make the decision over which to

> use ? Guess, I'll be calling them on Monday , too !!

>

> I'm very glad to hear of another baby Kailey's age doing well in the

> band. At this rate she may be 9 mos, before she gets it !!

>

> BTW - I love the name Michala too !! My husband is Irish and I am

> ish, so we wanted celtic names for our babies. Her name

> (pronounced kay -lay) is actually spelled Ceiladgh in the language,

> but we didn't want her to have to go through life explaining it !!!!

> LOL

>

> Take care,

>

> -- In Plagiocephalyegroups, " and Luck "

> <msluck@q...> wrote:

> > :

> > I feel your pain (and I am not being sarcastic). This whole thing

> started

> > as a fiasco for us as well, BUT THERE IS GOOD NEWS!!! Once the

> band is on

> > Kailey's head and you see the first signs of correction, your anger

> will

> > soften. Not so much that you will like the doctors much more, but

> you will

> > be finally making progress instead of spinning your wheels.

> >

> > Did your neuro post date the prescription? If not, I would call CT

> and get

> > the earliest appointment possible.

> >

> > We started treatment at 7 1/2 months and saw correction in the

> first two

> > weeks. It has been wonderful since then. We have fun when we go in

> > public - We decorate the band with stickers and loves the

> attention

> > he gets when people look at him. He is almost finished with

> treatment and I

> > am totally happy with our progress. He may not be perfectly round,

> but we

> > are so much better than where we were. The people at the Chicago

> clinic,

> > May Kay and Dina, are wonderful. Friendly, informative and very

> responsive.

> > I am sure your clinic will be just as nice. The only way this

> turns out

> > good is when the treatment finally is underway.

> >

> > Keep your head up. You are not alone in this fight...and you can

> vent here

> > anytime. I love the name Kailey. Our second daughter is Michala

> and we

> > call her Kayle.

> > Sue Luck

> >

> >

> >

> >

> > ----- Original Message -----

> > From: Aschton <aschton@y...>

> > <Plagiocephalyegroups>

> > Sent: Friday, August 25, 2000 9:03 PM

> > Subject: Another update on Kailey

> >

> >

> > > Hey All !

> > > I haven't posted in awhile (except to respond to a few of the

> Tricare

> > > issues) because at our highly recommended Neuro's suggestion,

>

> > > and I have been 'waiting and seeing' about Kailey's Plagio.

> > >

> > > Well, this week was our 2 month progress check and all I can say

> is

> > > that our Neuro. is psychotic and suffers from extreme split

> > > personality disorder. Kailey will finally be getting the DOC band

> as

> > > soon as we go back and get all the tests done that SHOULD have

> been 2

> > > mos. ago etc. I actually have the prescription for the band in

> > > hand , but Psycho. Neuro is making us wait for a CT scan ( to be

> done

> > > at the Army hospital sometime this year) to rule out Cranio. first

> > > because at this visit she's not so sure anymore. To say the

> least -

> > > this appt. did NOT go well !!!!

> > >

> > > The scary part here is that this woman is HIGHLY recommended by

> CT,

> > > however, I hope to change that once I get into see them. Too many

> > > bad things have occurred with this Dr. and I could write so many

> > > novels.............

> > > You guys have all been so supportive and all I have done since we

> > > joined months ago is vent. So, I won't do any more of that here in

> > > this post . What I could really use right now is a favor from you

> > > guys.

> > >

> > > Could any one of you that has a story where everything went well

> for

> > > your babies (plagio. wise)right from the start Post about it ??

> > > Please, Please ?? I'm in a really negative place right now, and I

> > > have read so many posts from people getting the same crap that we

> > > are. I would really LOVE to hear from someone who recognized this

> > > early and had a DR. take them seriously, AND got treatment pretty

> > > quickly and all is well. Or anyone that just has something

> pleasant

> > > to say about whatever would be good, too

> > >

> > > PLEASE!? :0)

> > >

> > > and Kailey in Georgia

> > >

> > >

> > >

> > >

[Guest guest]

I asked her

if the band would make the brachy worse and she said 'No', but Kendra

said CT has a Brachy band - will CT make the decision over which

to

use ?

:

I talked to my "DOC lady" about brachy bands, and she said that although

they treat many brachy cases, they have all ended up with the regular band

because the head is asymmetrical at the back. The clinic will do

the cast, and the people in Phoenix will decide which band to use.

Apparently the brachy band is a bit of a pain in the butt. Maybe

they have decided just to use the regular ones? It's certainly worth

asking about anyway.

Good luck with all of your phone calls on Monday. Keep us posted!

Kendra

Aschton wrote:

Hi Sue !

I'm not sure exactly what I have from my Dr. !! The last time we

saw

her she did the whole 'wait and see' routine because she was almost

5

mos. then and not too bad. Now at almost 8mos. old ( Sept. 1) she

says "ok, she's gotten worse, but she's getting too old,but if

you do

nothing she'll NEVER get any better" , She contradicted herself

over

EVERY single thing she told us earlier (Bi -polar , maybe

?).

Then she wrote on a prescription pad "DOC band evaluate, fit & treat"

and told me to call CT in Atlanta AFTER we got a CT scan and had

those films sent to her (no reports, just films). and THEN she

would

call me with the go ahead or not. Ok fine , but the Army

hospital

here told me today that they have a VERY LONG wait list for CT's

and

the fact that Kailey has to be sedated could mean a longer wait.

Tricare was closed by the time I got off the phone, but I think

there

is a policy here that could get me covered if I go to a Civvy

hospital since there's a wait - I'll be calling on Monday !!!!

I'm glad to have the 'prescription' , but am I supposed to just

go to

CT with that ? Surely not. Oh ! She also said we will

be in the

band about 4-5 mos for brachy. - Is that about right ? I

asked her

if the band would make the brachy worse and she said 'No', but

Kendra

said CT has a Brachy band - will CT make the decision over which

to

use ? Guess, I'll be calling them on Monday , too !!

I'm very glad to hear of another baby Kailey's age doing well in

the

band. At this rate she may be 9 mos, before she gets it !!

BTW - I love the name Michala too !! My husband is Irish and

I am

ish, so we wanted celtic names for our babies. Her name

(pronounced kay -lay) is actually spelled Ceiladgh in the language,

but we didn't want her to have to go through life explaining it

!!!!

LOL

Take care,

-- In Plagiocephalyegroups, " and Luck"

<msluck@q...> wrote:

> :

> I feel your pain (and I am not being sarcastic). This whole

thing

started

> as a fiasco for us as well, BUT THERE IS GOOD NEWS!!! Once

the

band is on

> Kailey's head and you see the first signs of correction, your

anger

will

> soften. Not so much that you will like the doctors much

more, but

you will

> be finally making progress instead of spinning your wheels.

>

> Did your neuro post date the prescription? If not, I would

call CT

and get

> the earliest appointment possible.

>

> We started treatment at 7 1/2 months and saw correction in the

first two

> weeks. It has been wonderful since then. We have

fun when we go in

> public - We decorate the band with stickers and loves

the

attention

> he gets when people look at him. He is almost finished

with

treatment and I

> am totally happy with our progress. He may not be perfectly

round,

but we

> are so much better than where we were. The people at the

Chicago

clinic,

> May Kay and Dina, are wonderful. Friendly, informative

and very

responsive.

> I am sure your clinic will be just as nice. The only way

this

turns out

> good is when the treatment finally is underway.

>

> Keep your head up. You are not alone in this fight...and

you can

vent here

> anytime. I love the name Kailey. Our second daughter

is Michala

and we

> call her Kayle.

> Sue Luck

>

>

>

>

> ----- Original Message -----

> From: Aschton <aschton@y...>

> <Plagiocephalyegroups>

> Sent: Friday, August 25, 2000 9:03 PM

> Subject: Another update on Kailey

>

>

> > Hey All !

> > I haven't posted in awhile (except to respond to a few of the

Tricare

> > issues) because at our highly recommended Neuro's suggestion,

> > and I have been 'waiting and seeing' about Kailey's Plagio.

> >

> > Well, this week was our 2 month progress check and all I can

say

is

> > that our Neuro. is psychotic and suffers from extreme split

> > personality disorder. Kailey will finally be getting the DOC

band

as

> > soon as we go back and get all the tests done that SHOULD have

been 2

> > mos. ago etc. I actually have the prescription for the

band in

> > hand , but Psycho. Neuro is making us wait for a CT scan (

to be

done

> > at the Army hospital sometime this year) to rule out Cranio.

first

> > because at this visit she's not so sure anymore. To say

the

least -

> > this appt. did NOT go well !!!!

> >

> > The scary part here is that this woman is HIGHLY recommended

by

CT,

> > however, I hope to change that once I get into see them.

Too many

> > bad things have occurred with this Dr. and I could write so

many

> > novels.............

> > You guys have all been so supportive and all I have done

since we

> > joined months ago is vent. So, I won't do any more of that

here in

> > this post . What I could really use right now is a favor from

you

> > guys.

> >

> > Could any one of you that has a story where everything went

well

for

> > your babies (plagio. wise)right from the start Post about it

??

> > Please, Please ?? I'm in a really negative place right

now, and I

> > have read so many posts from people getting the same crap that

we

> > are. I would really LOVE to hear from someone who recognized

this

> > early and had a DR. take them seriously, AND got treatment

pretty

> > quickly and all is well. Or anyone that just has something

pleasant

> > to say about whatever would be good, too

> >

> > PLEASE!? :0)

> >

> > and Kailey in Georgia

> >

> >

> >

> >

[Guest guest]

In a message dated 8/25/00 10:22:00 PM Pacific Daylight Time,

msluck@... writes:

<< Maybe x-ray

would have a shorter waiting time (no sedation needed).

>>

- just wanted to say we also just had plain x-rays to rule out fused

sutures. He has had x-rays a couple times and when requested we just head up

to x-ray the same day a wait for a little bit. The wait has been getting

someone to read them. Maybe ask if you can go that route to save time. They

also did not sedate. And if a cat scan, request a time during nap time.

Really helps with sedation.

Tammy & 12/8/99

[Guest guest]

Thank good . I was afraid I sounded arrogant. I only meant that DR

and insurance companies in Florida are up to date about all this tort and

plagio thing.

best of luck to you and all, stay strong for our children's.

[Guest guest]

Dear ,

My son, Spencer has extreme brachy, and he was given a regular band, not a brachy band at Cranial Tech in Charlotte, NC. We are definitely seeing results. They told us at the office that the woman who makes the bands in Arizona makes the decision as to make a regular band or a brachy band. Just thought you'd like to know.

(Spencer's Mom) :-))

-----Original Message-----From: & Kendra [mailto:kbgarv@...]Sent: Saturday, August 26, 2000 1:29 AMPlagiocephalyegroupsSubject: Re: Re: Another update on KaileyI asked her if the band would make the brachy worse and she said 'No', but Kendra said CT has a Brachy band - will CT make the decision over which to use ? : I talked to my "DOC lady" about brachy bands, and she said that although they treat many brachy cases, they have all ended up with the regular band because the head is asymmetrical at the back. The clinic will do the cast, and the people in Phoenix will decide which band to use. Apparently the brachy band is a bit of a pain in the butt. Maybe they have decided just to use the regular ones? It's certainly worth asking about anyway. Good luck with all of your phone calls on Monday. Keep us posted! Kendra Aschton wrote: Hi Sue ! I'm not sure exactly what I have from my Dr. !! The last time we saw her she did the whole 'wait and see' routine because she was almost 5 mos. then and not too bad. Now at almost 8mos. old ( Sept. 1) she says "ok, she's gotten worse, but she's getting too old,but if you do nothing she'll NEVER get any better" , She contradicted herself over EVERY single thing she told us earlier (Bi -polar , maybe ?). Then she wrote on a prescription pad "DOC band evaluate, fit & treat" and told me to call CT in Atlanta AFTER we got a CT scan and had those films sent to her (no reports, just films). and THEN she would call me with the go ahead or not. Ok fine , but the Army hospital here told me today that they have a VERY LONG wait list for CT's and the fact that Kailey has to be sedated could mean a longer wait. Tricare was closed by the time I got off the phone, but I think there is a policy here that could get me covered if I go to a Civvy hospital since there's a wait - I'll be calling on Monday !!!! I'm glad to have the 'prescription' , but am I supposed to just go to CT with that ? Surely not. Oh ! She also said we will be in the band about 4-5 mos for brachy. - Is that about right ? I asked her if the band would make the brachy worse and she said 'No', but Kendra said CT has a Brachy band - will CT make the decision over which to use ? Guess, I'll be calling them on Monday , too !! I'm very glad to hear of another baby Kailey's age doing well in the band. At this rate she may be 9 mos, before she gets it !! BTW - I love the name Michala too !! My husband is Irish and I am ish, so we wanted celtic names for our babies. Her name (pronounced kay -lay) is actually spelled Ceiladgh in the language, but we didn't want her to have to go through life explaining it !!!! LOL Take care, -- In Plagiocephalyegroups, " and Luck" <msluck@q...> wrote: > : > I feel your pain (and I am not being sarcastic). This whole thing started > as a fiasco for us as well, BUT THERE IS GOOD NEWS!!! Once the band is on > Kailey's head and you see the first signs of correction, your anger will > soften. Not so much that you will like the doctors much more, but you will > be finally making progress instead of spinning your wheels. > > Did your neuro post date the prescription? If not, I would call CT and get > the earliest appointment possible. > > We started treatment at 7 1/2 months and saw correction in the first two > weeks. It has been wonderful since then. We have fun when we go in > public - We decorate the band with stickers and loves the attention > he gets when people look at him. He is almost finished with treatment and I > am totally happy with our progress. He may not be perfectly round, but we > are so much better than where we were. The people at the Chicago clinic, > May Kay and Dina, are wonderful. Friendly, informative and very responsive. > I am sure your clinic will be just as nice. The only way this turns out > good is when the treatment finally is underway. > > Keep your head up. You are not alone in this fight...and you can vent here > anytime. I love the name Kailey. Our second daughter is Michala and we > call her Kayle. > Sue Luck > > > > > ----- Original Message ----- > From: Aschton <aschton@y...> > <Plagiocephalyegroups> > Sent: Friday, August 25, 2000 9:03 PM > Subject: Another update on Kailey > > > > Hey All ! > > I haven't posted in awhile (except to respond to a few of the Tricare > > issues) because at our highly recommended Neuro's suggestion, > > and I have been 'waiting and seeing' about Kailey's Plagio. > > > > Well, this week was our 2 month progress check and all I can say is > > that our Neuro. is psychotic and suffers from extreme split > > personality disorder. Kailey will finally be getting the DOC band as > > soon as we go back and get all the tests done that SHOULD have been 2 > > mos. ago etc. I actually have the prescription for the band in > > hand , but Psycho. Neuro is making us wait for a CT scan ( to be done > > at the Army hospital sometime this year) to rule out Cranio. first > > because at this visit she's not so sure anymore. To say the least - > > this appt. did NOT go well !!!! > > > > The scary part here is that this woman is HIGHLY recommended by CT, > > however, I hope to change that once I get into see them. Too many > > bad things have occurred with this Dr. and I could write so many > > novels............. > > You guys have all been so supportive and all I have done since we > > joined months ago is vent. So, I won't do any more of that here in > > this post . What I could really use right now is a favor from you > > guys. > > > > Could any one of you that has a story where everything went well for > > your babies (plagio. wise)right from the start Post about it ?? > > Please, Please ?? I'm in a really negative place right now, and I > > have read so many posts from people getting the same crap that we > > are. I would really LOVE to hear from someone who recognized this > > early and had a DR. take them seriously, AND got treatment pretty > > quickly and all is well. Or anyone that just has something pleasant > > to say about whatever would be good, too > > > > PLEASE!? :0) > > > > and Kailey in Georgia > > > > > > > >

[Guest guest]

Thank you . I really feel for you and your baby. Its going to get

better you will see as soon as you get the band on. I now what your talking

about regarding the health care, I read everybody's letters every day. its

amazing.!! wish you all the best.

Love nary.