Re: questions

[Guest guest]

Hi

I started milk thistle before I started tx, used it

all the way through and am now 18 months post tx still

undetectible. IF it were me, I'd use it, but thats my

opinion only.

--- Aylin Kantarci

wrote:

>

> Hello

>

> I have a few questions:

>

> 1. When the treatment ends, PCR test is performed in

> the 6th month. Is it

> suitable to have milk thistle within this 6 months?

> Is there any possibility

> that test may give false negative results? Does milk

> thistle make the

> production of HCV virus slow while protectiong the

> liver?

>

> 2. Our patient's white blood cell count is very low.

> Low WBC leads to

> tiredness ans susceptibility to infections. How

> long does it take to wbc

> count to rise to normal levels?

>

> Thanks

>

>

>

>

>

>

>

[Guest guest]

--

Hi Tammy,

Why does the dr. think has ADD? Because she is vivacious?

You said she is doing well in school. My dd who has OCD is also

vivacious, outgoing, crazy, loving, and I don't consider her ADD.

She does well in school and has lots of energy. She use to be afraid

at night too, and slept with me after the Ca. wildfires. She had

scary thoughts about killing herself and didn't want to be alone

either. Everything on the news scared her. She is on meds now and

cbt, erp therapy and doing well. You asked if she could be treated

behaviorally, all I know is my daughter has been seeing her

therapist for 7 months and is still seeing her until summer to get

the suicide thoughts completely under control. I know it took dd

along time to tell me she was even having those thoughts. She is

alot better now and I feel is living proof of right meds, right cbt

treatment=relief! Sandy

- In , " Tammy T. Cline "

<susabean@q...> wrote:

>

> Hi, everyone. I am coming out of lurker mode to ask a question

about my

> youngest daughter. As a quick refresher, I have an 11 yo dd that

was dx'd

> with ocd last summer. She is doing fairly well, and we have

changed

> psychiatrists, which has made a WORLD of difference. My 9 year

old,

> however, has lots of fears. We had a bit of a disagreement with

the old

> psychiatrist regarding treatment for her, and currently she is not

under

> treatment of any sort, but I am really considering it.

>

> (the 9 year old) is a fun loving, expressive, vivacious

kid. She is

> also deathly afraid of being alone. She wants someone upstairs,

preferably

> in the bathroom, when she showers. We have progressed to the door

open and

> someone within yelling distance. She can't verbalize WHY she is

scared, she

> just is. She won't sleep in her own bed, and she shares a room

with her

> sister. She is fine until her sister falls asleep, and then it is

up and

> down the stairs until I come to bed. She will then ask to sleep

with me,

> and until she falls asleep, clings to me for dear life telling me

she is

> scared. The fears are varied....Satan is mad at her, the Bay

Bridge will

> fall down when we are at the ocean, and we will be trapped at the

condo of a

> friend and she will never see Pop and Bear (our dog) again...that

burglars

> are going to get us, etc. It doesn't matter how close I hold her,

she is

> still scared. She does fall off to sleep with us, though.

>

> I really thought that we should give behavioral therapy a chance

before

> trying meds, but the psychologist we took her to saw her for 6

weeks and

> d/c'd her. is a private kid, and I'm not sure what she

shared, but

> after 2 weeks of a

> " stay in my own bed " chart, she had stayed in bed 1/2 the time,

the

> therapist thought her work with was done.

>

> The new psychiatrist seems to think, based on my description of

's

> behaviors during our family eval for nah, that is ADD,

and has an

> anxiety based disorder to boot. What is normal and what is in

need of meds?

> She is unlike her sister in that she is functioning, doing well

with school,

> etc....but nighttime is the pits.

>

> Is this something that can be treated behaviorally?

>

> Blessings,

> Tammy

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.300 / Virus Database: 266.7.0 - Release Date:

03/08/2005

>

>

>

[Guest guest]

--

Now that you gave more information on , I can see she has

trouble staying focused. I think you should go to the dr. appt. and

get more information. Night is harder for alot of kids and maybe a

med to help sleep for awhile would be good. She could be having

scary thougths and some exposure may work for that too. Hang in

there and keep us posted on what the dr. says. Sandy

- In , " Tammy T. Cline "

<susabean@q...> wrote:

> is homeschooled and has an incredibly hard time focusing on

her

> schoolwork....I actually have to sit with her and repeatedly

refocus her in

> order for her to complete it.....but becomes so hyperfocused on

some things

> as to not hear someone right next to her. She is a human

> whirlwind......every room she leaves is left in a mess.....and she

really

> doesn't realize she does it. She will forget what you ask her to

do by the

> time she gets to the next room. She requires very little sleep,

and has a

> hard time sitting still....she was and is my bouncing baby girl

quite

> literally! BUT.....she's funny, and sweet, and co-operative, and

loving,

> and incredibly smart, and just a really cool kid. She is having

problems

> with her learning, however, because of her inability to focus. I

am having

> her tested through the schools to rule out any learning problems

and I am

> having her tested for central auditory processing disorder since,

because of

> severe, repeated ear infections from 6 wks til 14 months when

tubes were

> inserted, she was effectively deaf during that time. She was/is

> language/speech delayed and had speech therapy for 4

years......and still

> has a slight speech impediment. I guess I have had a hard time

with the

> medication aspect for the anxiety because, for the most part, the

anxiety

> shows up only at bedtime or when she has to be alone.....and she

functions

> quite well beyond that. But maybe its time for me to revisit that

idea.

> The psychiatrist has recommended an ssri and strattera...based on

the last

> dr's report and our reporting. He has yet to meet her, but wants

to do an

> eval on her. I am thinking that maybe I should make the

appointment.

>

> Blessings,

> Tammy

> Re: questions

>

>

>

> --

> Hi Tammy,

> Why does the dr. think has ADD? Because she is vivacious?

> You said she is doing well in school. My dd who has OCD is also

> vivacious, outgoing, crazy, loving, and I don't consider her ADD.

> She does well in school and has lots of energy. She use to be

afraid

> at night too, and slept with me after the Ca. wildfires. She had

> scary thoughts about killing herself and didn't want to be alone

> either. Everything on the news scared her. She is on meds now

and

> cbt, erp therapy and doing well. You asked if she could be

treated

> behaviorally, all I know is my daughter has been seeing her

> therapist for 7 months and is still seeing her until summer to

get

> the suicide thoughts completely under control. I know it took dd

> along time to tell me she was even having those thoughts. She is

> alot better now and I feel is living proof of right meds, right

cbt

> treatment=relief! Sandy

>

>

>

>

>

>

> - In , " Tammy T. Cline "

> <susabean@q...> wrote:

> >

> > Hi, everyone. I am coming out of lurker mode to ask a

question

> about my

> > youngest daughter. As a quick refresher, I have an 11 yo dd

that

> was dx'd

> > with ocd last summer. She is doing fairly well, and we have

> changed

> > psychiatrists, which has made a WORLD of difference. My 9 year

> old,

> > however, has lots of fears. We had a bit of a disagreement

with

> the old

> > psychiatrist regarding treatment for her, and currently she is

not

> under

> > treatment of any sort, but I am really considering it.

> >

> > (the 9 year old) is a fun loving, expressive, vivacious

> kid. She is

> > also deathly afraid of being alone. She wants someone

upstairs,

> preferably

> > in the bathroom, when she showers. We have progressed to the

door

> open and

> > someone within yelling distance. She can't verbalize WHY she

is

> scared, she

> > just is. She won't sleep in her own bed, and she shares a room

> with her

> > sister. She is fine until her sister falls asleep, and then

it is

> up and

> > down the stairs until I come to bed. She will then ask to

sleep

> with me,

> > and until she falls asleep, clings to me for dear life telling

me

> she is

> > scared. The fears are varied....Satan is mad at her, the Bay

> Bridge will

> > fall down when we are at the ocean, and we will be trapped at

the

> condo of a

> > friend and she will never see Pop and Bear (our dog)

again...that

> burglars

> > are going to get us, etc. It doesn't matter how close I hold

her,

> she is

> > still scared. She does fall off to sleep with us, though.

> >

> > I really thought that we should give behavioral therapy a

chance

> before

> > trying meds, but the psychologist we took her to saw her for 6

> weeks and

> > d/c'd her. is a private kid, and I'm not sure what she

> shared, but

> > after 2 weeks of a

> > " stay in my own bed " chart, she had stayed in bed 1/2 the

time,

> the

> > therapist thought her work with was done.

> >

> > The new psychiatrist seems to think, based on my description

of

> 's

> > behaviors during our family eval for nah, that is

ADD,

> and has an

> > anxiety based disorder to boot. What is normal and what is in

> need of meds?

> > She is unlike her sister in that she is functioning, doing well

> with school,

> > etc....but nighttime is the pits.

> >

> > Is this something that can be treated behaviorally?

> >

> > Blessings,

> > Tammy

> > --

> > No virus found in this outgoing message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.300 / Virus Database: 266.7.0 - Release Date:

> 03/08/2005

> >

> >

> >

[Guest guest]

--

Now that you gave more information on , I can see she has

trouble staying focused. I think you should go to the dr. appt. and

get more information. Night is harder for alot of kids and maybe a

med to help sleep for awhile would be good. She could be having

scary thougths and some exposure may work for that too. Hang in

there and keep us posted on what the dr. says. Sandy

- In , " Tammy T. Cline "

<susabean@q...> wrote:

> is homeschooled and has an incredibly hard time focusing on

her

> schoolwork....I actually have to sit with her and repeatedly

refocus her in

> order for her to complete it.....but becomes so hyperfocused on

some things

> as to not hear someone right next to her. She is a human

> whirlwind......every room she leaves is left in a mess.....and she

really

> doesn't realize she does it. She will forget what you ask her to

do by the

> time she gets to the next room. She requires very little sleep,

and has a

> hard time sitting still....she was and is my bouncing baby girl

quite

> literally! BUT.....she's funny, and sweet, and co-operative, and

loving,

> and incredibly smart, and just a really cool kid. She is having

problems

> with her learning, however, because of her inability to focus. I

am having

> her tested through the schools to rule out any learning problems

and I am

> having her tested for central auditory processing disorder since,

because of

> severe, repeated ear infections from 6 wks til 14 months when

tubes were

> inserted, she was effectively deaf during that time. She was/is

> language/speech delayed and had speech therapy for 4

years......and still

> has a slight speech impediment. I guess I have had a hard time

with the

> medication aspect for the anxiety because, for the most part, the

anxiety

> shows up only at bedtime or when she has to be alone.....and she

functions

> quite well beyond that. But maybe its time for me to revisit that

idea.

> The psychiatrist has recommended an ssri and strattera...based on

the last

> dr's report and our reporting. He has yet to meet her, but wants

to do an

> eval on her. I am thinking that maybe I should make the

appointment.

>

> Blessings,

> Tammy

> Re: questions

>

>

>

> --

> Hi Tammy,

> Why does the dr. think has ADD? Because she is vivacious?

> You said she is doing well in school. My dd who has OCD is also

> vivacious, outgoing, crazy, loving, and I don't consider her ADD.

> She does well in school and has lots of energy. She use to be

afraid

> at night too, and slept with me after the Ca. wildfires. She had

> scary thoughts about killing herself and didn't want to be alone

> either. Everything on the news scared her. She is on meds now

and

> cbt, erp therapy and doing well. You asked if she could be

treated

> behaviorally, all I know is my daughter has been seeing her

> therapist for 7 months and is still seeing her until summer to

get

> the suicide thoughts completely under control. I know it took dd

> along time to tell me she was even having those thoughts. She is

> alot better now and I feel is living proof of right meds, right

cbt

> treatment=relief! Sandy

>

>

>

>

>

>

> - In , " Tammy T. Cline "

> <susabean@q...> wrote:

> >

> > Hi, everyone. I am coming out of lurker mode to ask a

question

> about my

> > youngest daughter. As a quick refresher, I have an 11 yo dd

that

> was dx'd

> > with ocd last summer. She is doing fairly well, and we have

> changed

> > psychiatrists, which has made a WORLD of difference. My 9 year

> old,

> > however, has lots of fears. We had a bit of a disagreement

with

> the old

> > psychiatrist regarding treatment for her, and currently she is

not

> under

> > treatment of any sort, but I am really considering it.

> >

> > (the 9 year old) is a fun loving, expressive, vivacious

> kid. She is

> > also deathly afraid of being alone. She wants someone

upstairs,

> preferably

> > in the bathroom, when she showers. We have progressed to the

door

> open and

> > someone within yelling distance. She can't verbalize WHY she

is

> scared, she

> > just is. She won't sleep in her own bed, and she shares a room

> with her

> > sister. She is fine until her sister falls asleep, and then

it is

> up and

> > down the stairs until I come to bed. She will then ask to

sleep

> with me,

> > and until she falls asleep, clings to me for dear life telling

me

> she is

> > scared. The fears are varied....Satan is mad at her, the Bay

> Bridge will

> > fall down when we are at the ocean, and we will be trapped at

the

> condo of a

> > friend and she will never see Pop and Bear (our dog)

again...that

> burglars

> > are going to get us, etc. It doesn't matter how close I hold

her,

> she is

> > still scared. She does fall off to sleep with us, though.

> >

> > I really thought that we should give behavioral therapy a

chance

> before

> > trying meds, but the psychologist we took her to saw her for 6

> weeks and

> > d/c'd her. is a private kid, and I'm not sure what she

> shared, but

> > after 2 weeks of a

> > " stay in my own bed " chart, she had stayed in bed 1/2 the

time,

> the

> > therapist thought her work with was done.

> >

> > The new psychiatrist seems to think, based on my description

of

> 's

> > behaviors during our family eval for nah, that is

ADD,

> and has an

> > anxiety based disorder to boot. What is normal and what is in

> need of meds?

> > She is unlike her sister in that she is functioning, doing well

> with school,

> > etc....but nighttime is the pits.

> >

> > Is this something that can be treated behaviorally?

> >

> > Blessings,

> > Tammy

> > --

> > No virus found in this outgoing message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.300 / Virus Database: 266.7.0 - Release Date:

> 03/08/2005

> >

> >

> >

[Guest guest]

Hi Tammy,There is a big difference between the two. That is why so many doctors 'poo-poo' the idea of these casts, in the past they used Risser casts and they failed to correct and actually deformed the body.I lifted this from a post that sent a while ago:Risser casting and EDF (elongation, derotation, flexion) casting.

Scoliosis is a 3-dimensional problem that should be corrected on all 3 planes.

The EDF casting method has the ability to elongate the spine through

traction, derotate the spine/pelvis, and to improve lordosis and over

all body shape/alignment.

EDF differs from Risser casting. EDF casts are over the shoulder, with a

large mushroom opening on the front to allow for proper chest expansion. On

the back, there is a small cutout on the concavity of the curve, not going

past the midline. It was found that the spine became more aligned with this

cutout than without and that it helped correct rotation.

Early treatment w/ EDF is generally over a period of 9-12 months depending on

age and childs specific situation. When the child's Cobb angle is under 10

deg, they are removed from their series of EDF plaster casts and placed into

a removable brace.

Early treatment EDF does not alternate with bracing as Risser plaster casting

can. It is a solid block of casts to decrease the childs curvature(s) ,

gently, slowly & permanently.

The biggest difference is the aim of treatment- which is cure,opposed to

containment. Dr's Cotrel & Morel developed the EDF technique years ago in

France and found that using one of these techniques in isolation has it's own

drawbacks, yet using all three simultaneously potentialises the advantages of

each.(Elongation, Derotation, Flexion). Subject: QuestionsTo: infantile_scoliosis Date: Monday, August 10, 2009, 3:06 PM

What is a Mehta cast? Is it any different than a Risor Cast?

[Guest guest]

Thank you for posting this! I saved it in a file so I can use it if anyone asks.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Tammy <tam_tammy20@ yahoo.com>Subject: [infantile_scoliosi s] QuestionsTo: infantile_scoliosis @yahoogroups. comDate: Monday, August 10, 2009, 3:06 PM

What is a Mehta cast? Is it any different than a Risor Cast?

[Guest guest]

Well my son goes to Shriners in Chicago to get the Risser cast on. Does anyone

else get the Risser cast? My son who is 2 and a 1/2 has had a lot of

problems everytime he gets the cast on. So the Risser cast really probably

isn't helping him? So the other cast is probably better then the Risser? I'm

confused I don't get to speak with the Dr. much and when I ask questions I feel

like I'm being ignored.

>

>

> Subject: Questions

> To: infantile_scoliosis

> Date: Monday, August 10, 2009, 3:06 PM

>

>

>

>

>

>

>  

>

>

>

>

>

> What is a Mehta cast? Is it any different than a Risor

Cast?

>

[Guest guest]

My son also went to the Shriners in Chicago and although the doctor called the cast a Risser cast, it was the EDF cast (over the shoulder, with the belly cut out) and I know that the doctor there was trained by Dr. Mehta in the EDF tecnique.

To: infantile_scoliosis Sent: Tuesday, August 11, 2009 9:48:49 AMSubject: Re: Questions

Well my son goes to Shriners in Chicago to get the Risser cast on. Does anyone else get the Risser cast? My son who is 2 and a 1/2 has had a lot of problems everytime he gets the cast on. So the Risser cast really probably isn't helping him? So the other cast is probably better then the Risser? I'm confused I don't get to speak with the Dr. much and when I ask questions I feel like I'm being ignored. > > From: Tammy <tam_tammy20@ ...>> Subject: [infantile_scoliosi s]

Questions> To: infantile_scoliosis @yahoogroups. com> Date: Monday, August 10, 2009, 3:06 PM> > > > > > > > > > > > > What is a Mehta cast? Is it any different than a Risor Cast?>

[Guest guest]

Any time you feel that you are being ignored by a member of the medical community you need to assert yourself until you feel you ARE being heard. Just because they may have done a procedure 40 million times this is your first time at the rodeo.

Write down all your questions so you have don't have to rely on your memory and don't let them leave until they are all answered so you understand.

As far as a Rissor vs a Mehta cast - they are two totally different casts and procedures. This group supports the use of the Mehta method of a series of a progressive series of specifically fashioned plaster jackets. I would definately talk with your doctor!

Gail

"The Earth is the insane asylum for the rest of universe"

“Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and scheduled for July 10, 2009; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

Subject: Re: QuestionsTo: infantile_scoliosis Date: Tuesday, August 11, 2009, 9:48 AM

Well my son goes to Shriners in Chicago to get the Risser cast on. Does anyone else get the Risser cast? My son who is 2 and a 1/2 has had a lot of problems everytime he gets the cast on. So the Risser cast really probably isn't helping him? So the other cast is probably better then the Risser? I'm confused I don't get to speak with the Dr. much and when I ask questions I feel like I'm being ignored. > > > Subject: Questions> To: infantile_scoliosis > Date: Monday, August 10, 2009, 3:06 PM> > > > > > > > > > > > > What is a Mehta cast? Is it any different than a Risor Cast?>------------------------------------

[Guest guest]

Zero is NOT for every kid!!! will probably never be at zero. Call me if you want to talk I am home getting things ready for our trip. Not sure about the diarrhea.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: questionsTo: infantile_scoliosis Date: Saturday, August 29, 2009, 12:09

PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.

Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace?

keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGH

Thanks for your help,

Jill

[Guest guest]

I need to relax and trust the docs a bit more. I guess I am just scared that if he gets worse in the brace we will have to go back to a cast. He is 3 and a half and becoming more and more opinionated (aka bull headed, stubborn etc.) with every passing day!

I hope your trip is to somewhere fun!

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] questionsTo: infantile_scoliosis @yahoogroups. comDate: Saturday, August 29, 2009, 12:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

I know the feeling of not wanting to go backwards all too well. Yes trust your docs and the orthotist. Oh and God help you as he gets older and voices his thoughts. That is the hardest part for me with . He can tell me what he does and does not like about the brace.Hang in there.We are headed back home(SE Texas)and stopping in Galveston along the way. Old dirty Texas beach, but that is all we know. And it is the boys' FIRST beach trip. They are SO excited to say the least. It will be our first time back there since hurricane Ike hit there last year. My husband and I are anxious to see how it has changed. Lots of good memories there growing up and many of the beaches and beaches houses we grew up in are gone. It will be kinda sad.BUT we are so excited to get out of

town!!!!!! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: Re: questionsTo: infantile_scoliosis Date: Saturday, August 29, 2009, 1:30 PM

I need to relax and trust the docs a bit more. I guess I am just scared that if he gets worse in the brace we will have to go back to a cast. He is 3 and a half and becoming more and more opinionated (aka bull headed, stubborn etc.) with every passing day!

I hope your trip is to somewhere fun!

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] questionsTo: infantile_scoliosis @yahoogroups. comDate: Saturday, August 29, 2009, 12:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

Tasha,

Have a great trip and let us know how Galveston looks now since the hurricane. Ive never been there but did go to Corpus Christi beach. It is a little dirty but its still the beach! Hope the boys enjoy it!

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] questionsTo: infantile_scoliosis @yahoogroups. comDate: Saturday, August 29, 2009, 12:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

Oh Jill.... This is making me so uneasy!!!! You poor thing! Call me when you get the chance and I hope the experienced brace moms can help you out with this.... as far as the diarhea..... UGHHHH!!!!! As if the whole process wasn't bad enough already! Noelle never got that from anesthesia so I have no idea if he picked up a bug or if it is a reaction of some kind. We'll talk soon and give your lil guy a hug from me!- Noelle's mommy, 2 1/2 years old and in 8th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Subject: questionsTo: infantile_scoliosis Date: Saturday, August 29, 2009, 5:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

Thanks Steph!

The char-cha-cha is getting much better, thank goodness and he actually didn't ask to take the brace off today so maybe he is getting used to it and realizing this is the new "normal". My latest and greatest worry is the correction issue. We can now get the brace so much tighter because his stomach isn't distended anymore (from the gas etc). Do you think that means we need to tighten the top part the same amount? I wonder if it is tighter if that will help the correction. I plan on calling our doc this week, but who knows when they will get back with me, right?! Don't you worry I will get this all worked out before you go in October so it will be smooth sailing for you.

I will call you this week,

Jill

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] questionsTo: infantile_scoliosis @yahoogroups. comDate: Saturday, August 29, 2009, 5:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

No, I don't think they can get every kid to 0* in a brace. Noah stopped casting at 14* and they got him to 9* in his first brace.

Make sure you get the in-brace measurement from the doc. You need to make sure that he's better in the brace. We didn't get an in-brace measurement once and Noah's back got worse. The brace was actually making his back worse and caused a compensentory curve to develop. Unfortunately it's still there now.

Yeah, I feel for you with the "asking off" requests. The best thing I can suggest is to never take it off when they cry/whine (unless you know they're actually in pain or sick.) If you do - you'll teach them if they cry/whine long enough mom will take it off. We've made a habit of always telling Noah exactly why we're taking it off "we're going outside to play and the doc said you can have it off for excersize."

We also used to also always play-up the benefits of the brace too. "Now you can take a bath, go swimming, etc. Isn't the brace great?!"

One more tip - someone here suggested this to me and it really helped - when taking his brace off we never say things like "I bet that feels great" or "now you're free" etc. You may need to inform grandma and grandpa not to say things like this either : )~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: ryanswalk@...Date: Sat, 29 Aug 2009 10:18:55 -0700Subject: Re: questions

Zero is NOT for every kid!!! will probably never be at zero. Call me if you want to talk I am home getting things ready for our trip. Not sure about the diarrhea.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- On Sat, 8/29/09, jill wienke <jillwienke> wrote:

From: jill wienke <jillwienke>Subject: questionsTo: infantile_scoliosis Date: Saturday, August 29, 2009, 12:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

Windows Live: Keep your friends up to date with what you do online. Find out more.

[Guest guest]

You are so sweet! I would call and ask your questions and then I usually call them back every day once in the am and then again in the pm until someone answers.... I'm nuts! - Noelle's mommy, 2 1/2 years old and in 8th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] questionsTo: infantile_scoliosis @yahoogroups. comDate: Saturday, August 29, 2009, 5:09 PM

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

Jill, I an ALWAYS had horrible, horrible diarrhea after ansesthesia. They told me that it is not a listed side effect, but I am not buying that in Ian's case any way.

Go with your gut...get the ortho's opinion.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Saturday, August 29, 2009 1:09:57 PMSubject: questions

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

got it before after anesthesia, but never like this. Today he did much better. I will let you know what the ortho says.

Jill

Subject: Re: questionsTo: infantile_scoliosis Date: Tuesday, September 1, 2009, 2:32 PM

Jill, I an ALWAYS had horrible, horrible diarrhea after ansesthesia. They told me that it is not a listed side effect, but I am not buying that in Ian's case any way.

Go with your gut...get the ortho's opinion.

Noelle (12-2-01)

Ian (8-15-04)

From: jill wienke <jillwienkeyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, August 29, 2009 1:09:57 PMSubject: [infantile_scoliosi s] questions

OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before they took him to the OR. He was great.Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all

the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia? UGHThanks for your help,Jill

[Guest guest]

Jill,

Sorry I am a bit behind in the posts. I'm glad to hear is getting better:)

Take advantage of that hour out of brace for all those big brace free hugs! He

will adjust quickly to it, it is just harder because he is older and can

vocalize more. Evan became so used to the brace, he actually preferred it on.

We did try to get it pretty tight. You begin to forget how tight the cast was

and it was a constant battle between me, my husband and my mom on how tight the

brace should be. We had them mark the straps before we left Rochester, so that

we knew how tight to make it, but we ended up pulling it a little tighter after

Evan's stomach seemed to settle and the brace seemed to loosen some. The good

thing is that you can eye ball the spine out of brace, just try not to drive

yourself crazy. You would be able to notice a significant change.

Please feel free to email or call me if have any questions. I will try and find

those brace shirts for you.

Barb

Mom to Evan

>

>

> From: jill wienke <jillwienkeyahoo (DOT) com>

> Subject: [infantile_scoliosi s] questions

> To: infantile_scoliosis @yahoogroups. com

> Date: Saturday, August 29, 2009, 5:09 PM

>

>

>  

>

> OK we made it back from Rochester late last night. Poor had to wait until

after 3:00 pm without food or drink before they took him to the OR. He was

great.

>

> Here are some questions. We went for the brace fitting and xray. Since Dr.

wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I

thought it looked terrible. Not straight at all. I asked him and he said it

wasn't going to get him to zero like the cast but it was good enough- better

than his 20* standing xray. This brace is supposed to last us a year or more! I

will call our doctor on Monday, but I am worried. The orthodics guy said if he

had thought it didn't look good he would take him back and make some

adjustments, but he said it would be fine. NO adjustments needed. After 2.5

years of casting I do not want to go backward. Isn't the goal 0 in brace?

>

> keeps asking to take it off. I think this will pass when he realizes we

aren't taking it off all the time. Lastly to top it all off he has horrible

diarrhea. Could this be from the anesthesia? UGH

>

> Thanks for your help,

> Jill

>

[Guest guest]

Thanks for the brace advice Barb! I know what you mean about tightening it. I can actaually easily get it an inch tighter than where they marked it because he stomach was so bloated while we were in Rochester!

I will call you soon, We should take the boys to the zoo one of these days.

Jill

PS- I saw Amy today. Babies are doing better!

Subject: Re: questionsTo: infantile_scoliosis Date: Tuesday, September 1, 2009, 10:27 PM

Jill,Sorry I am a bit behind in the posts. I'm glad to hear is getting better:) Take advantage of that hour out of brace for all those big brace free hugs! He will adjust quickly to it, it is just harder because he is older and can vocalize more. Evan became so used to the brace, he actually preferred it on. We did try to get it pretty tight. You begin to forget how tight the cast was and it was a constant battle between me, my husband and my mom on how tight the brace should be. We had them mark the straps before we left Rochester, so that we knew how tight to make it, but we ended up pulling it a little tighter after Evan's stomach seemed to settle and the brace seemed to loosen some. The good thing is that you can eye ball the spine out of brace, just try not to drive yourself crazy. You would be able to notice a significant change. Please feel free to email or call me if have any questions. I will try and find those brace shirts

for you.BarbMom to Evan > > > From: jill wienke <jillwienke@ yahoo. com>> Subject: [infantile_scoliosi s] questions> To: infantile_scoliosis @yahoogroups. com> Date: Saturday, August 29, 2009, 5:09 PM> > > > > OK we made it back from Rochester late last night. Poor had to wait until after 3:00 pm without food or drink before

they took him to the OR. He was great.> > Here are some questions. We went for the brace fitting and xray. Since Dr. wasn't there the orthodics guy viewed the xray. Of course I snuck a peak and I thought it looked terrible. Not straight at all. I asked him and he said it wasn't going to get him to zero like the cast but it was good enough- better than his 20* standing xray. This brace is supposed to last us a year or more! I will call our doctor on Monday, but I am worried. The orthodics guy said if he had thought it didn't look good he would take him back and make some adjustments, but he said it would be fine. NO adjustments needed. After 2.5 years of casting I do not want to go backward. Isn't the goal 0 in brace? > > keeps asking to take it off. I think this will pass when he realizes we aren't taking it off all the time. Lastly to top it all off he has horrible diarrhea. Could this be from the anesthesia?

UGH> > Thanks for your help,> Jill>

[Guest guest]

thanks !!

yes, we found out today Luke is at 5 degrees! We are completely excited! He is down to night time brace use officially (we have been night time bracing for about 1.5 months)...and at the next visit if he is status quo (4 months), he will be brace free!

I do have a question about todays visit... Our dr. used a "scoliosis measurement tool" (the official name has left my mind..with lots of other important stuff ;o) Luke's measurement was a 5 (this is a seperate measurement from the measurement made by our dr. on the new xray today). Luke laid flat on the table. he then put this tool on his back and a tiny ball made its way to a number. I was told this is a tool that is in conjuntion with clinical observations to determine whether a child's scoliosis may have gotten worse...When I take luke back in 4 months, and if he looks clinically the same and they use this tool and the number is still 5...they won't take an xray.... (apparently to avoid taking so many xrays...as my dr. knows I am a freak about too many xrays ...along with many other things;o) nonetheless...I was told it is typically used on older children and that luke has to be in the same position every time they

use it...(it determines if one side of the back is protruding more than the other, older children apparently touch their toes to get a reading)... okay so my long winded explanation ...here is the question...has anyone else had it done? My dr did stress tremendously that it is used in conjuction with clinical obs...but I will be happy to use the tool if we don't need anymore xrays!!!

Also, they took two new measurements today...one with luke sitting... so sitting height and then armspan...they have never taken those two measurements...anyone had those taken?

Thanks....

, Mom to Luke (2 years old, 5 degree curve...bracing at night)

From: poohlvr <poohlvr1020@ yahoo.com>Subject: [infantile_scoliosi s] Noelle's scoliosis confirmed & Ian updateTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 2, 2009, 9:56 PM

The results on the films taken yesterday came back and Noelle does have juvenile scoliosis. She has a 26 degree curve. I am going to get a copy of the radiologist' s report and the film and start making some calls. I know she is at a critical stage with the juvenile scoliosis and that keeping it below 30 degrees is imperative. Think I will contact Dr. Betz's office tomorrow.

Ian's film came back at 7 degrees. I need to find out how it compared to his last film. The ortho had said it was too small to measure last time, so I would like to see his latest x-ray next to his last one.

Noelle (12-2-01)

Ian (8-15-04)

[Guest guest]

, my son is 2 and our Dr has never used this tool on him, so I am not sure what this is but some of the other "seasoned" mom's on here may be able to help you. My son is not in a cast yet, but will be soon. Do you mind me asking when your son first started with casting and how many degrees did he start off with and how many casts did he have to wear before getting to this great result? Thanks

Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thursday, September 3, 2009 8:23:43 PMSubject: Re: questions

thanks !!

yes, we found out today Luke is at 5 degrees! We are completely excited! He is down to night time brace use officially (we have been night time bracing for about 1.5 months)...and at the next visit if he is status quo (4 months), he will be brace free!

I do have a question about todays visit... Our dr. used a "scoliosis measurement tool" (the official name has left my mind..with lots of other important stuff ;o) Luke's measurement was a 5 (this is a seperate measurement from the measurement made by our dr.. on the new xray today). Luke laid flat on the table. he then put this tool on his back and a tiny ball made its way to a number. I was told this is a tool that is in conjuntion with clinical observations to determine whether a child's scoliosis may have gotten worse...When I take luke back in 4 months, and if he looks clinically the same and they use this tool and the number is still 5...they won't take an xray.... (apparently to avoid taking so many xrays...as my dr. knows I am a freak about too many xrays ...along with many other things;o) nonetheless. ..I was told it is typically used on older children and that luke has to be in the same position every time they

use it...(it determines if one side of the back is protruding more than the other, older children apparently touch their toes to get a reading)... okay so my long winded explanation ...here is the question...has anyone else had it done? My dr did stress tremendously that it is used in conjuction with clinical obs...but I will be happy to use the tool if we don't need anymore xrays!!!

Also, they took two new measurements today...one with luke sitting... so sitting height and then armspan...they have never taken those two measurements. ..anyone had those taken?

Thanks....

, Mom to Luke (2 years old, 5 degree curve...bracing at night)

From: poohlvr <poohlvr1020@ yahoo.com>Subject: [infantile_scoliosi s] Noelle's scoliosis confirmed & Ian updateTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 2, 2009, 9:56 PM

The results on the films taken yesterday came back and Noelle does have juvenile scoliosis. She has a 26 degree curve. I am going to get a copy of the radiologist' s report and the film and start making some calls. I know she is at a critical stage with the juvenile scoliosis and that keeping it below 30 degrees is imperative. Think I will contact Dr. Betz's office tomorrow.

Ian's film came back at 7 degrees. I need to find out how it compared to his last film. The ortho had said it was too small to measure last time, so I would like to see his latest x-ray next to his last one.

Noelle (12-2-01)

Ian (8-15-04)

[Guest guest]

Hi Joan~

Luke story is much different then the stories on here. Luke was diagnosed at 6 months through a barium swallow study to rule out reflux (he had been throwing up and meds weren't working~ turns out he had an intolerance to oat) . they called to say no to reflux but that he had scoliosis. I immediately started "the search". We saw three different drs. and the third was mehta trained. He saw my son on a thursday and casted him on friday (luke was 8 months). We did not wait to see whether Luke's scoliosis was progressive..because his numbers were 45-47 degrees cobb and 24-26 RVAD. He had xrays in march that had these numbers. When they put him on the table to cast him (may), our dr. always take an xray pre casting~ his numbers were down to 27 cobb, 18 RVAD. He was casted. he wore his first cast for 11 weeks (due to illness, suppose to be 8)...and then he got it off and got on

his second cast...He was in his second cast (we were still in the hospital), Luke started crying, held his breath and lost consciousness~ They immediately cut the cast off....and kept him in the PICU to make sure nothing was wrong...he was fine...but I was not...I did not want him going back under anesthesia or getting a cast (we were told it was just a breath holding episode), my dr. agreed ~ I was so traumatized as I had been holding him when they called the code. anyway, they used the cast they cut off of him and made a brace from it. We decided that we would wear it until we all settled down (mainly me) from the event and then discuss casting again. six weeks in to the brace, Luke was down to 18-20 degrees COBB with 5 RVAD... and since that we did not get casted again...he has had some plateaus but has never progressed. He did wear the brace FULL TIME for 8 straight months...when I say full time I

mean 23.5 -24 hours a day. Then we slowly weaned him down to just night time use. so now we are down to 5 degrees and completely thrilled...and BTW~ he has had one other breath holding spell/loss of consciousness about 2 weeks ago so we know it was not the cast but acutally my son (I apparently did it when I was little)...it is horrible!

I never wanted to post Luke's story because I did not want other parents to think that the cast caused his episode...I did not want new parents to worry that it would happen to their child..but now, since he has had another one out of brace/cast, I think I can accurately relay the message that it was not the cast.

anyway, thanks for asking Joan. I hope your little one does well with casting! it is truly much easier for them...than us parents~

take care, natalie

From: poohlvr <poohlvr1020@ yahoo.com>Subject: [infantile_scoliosi s] Noelle's scoliosis confirmed & Ian updateTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 2, 2009, 9:56 PM

The results on the films taken yesterday came back and Noelle does have juvenile scoliosis. She has a 26 degree curve. I am going to get a copy of the radiologist' s report and the film and start making some calls. I know she is at a critical stage with the juvenile scoliosis and that keeping it below 30 degrees is imperative. Think I will contact Dr. Betz's office tomorrow.

Ian's film came back at 7 degrees. I need to find out how it compared to his last film. The ortho had said it was too small to measure last time, so I would like to see his latest x-ray next to his last one.

Noelle (12-2-01)

Ian (8-15-04)

[Guest guest]

Hey ,

They haven't used that tool on Noelle yet, but I know what you're talking about and I know that it is used on older kids with scoli. And, yes, Noelle has done the sitting and wingspan measurements......- Noelle's mommy, 2 1/2 years old and in 8th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: poohlvr <poohlvr1020@ yahoo.com>Subject: [infantile_scoliosi s] Noelle's scoliosis confirmed & Ian updateTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 2, 2009, 9:56 PM

The results on the films taken yesterday came back and Noelle does have juvenile scoliosis. She has a 26 degree curve. I am going to get a copy of the radiologist' s report and the film and start making some calls. I know she is at a critical stage with the juvenile scoliosis and that keeping it below 30 degrees is imperative. Think I will contact Dr. Betz's office tomorrow.

Ian's film came back at 7 degrees. I need to find out how it compared to his last film. The ortho had said it was too small to measure last time, so I would like to see his latest x-ray next to his last one.

Noelle (12-2-01)

Ian (8-15-04)