Introduction

[Guest guest]

Hi Orit,

I am sorry to hear about your daughter. We took my son to an Ear Nose and

Throat doctor that

didn't tell us very much. Our pediatrician recommended an Infectious Disease

doctor. So we

took him and they were wonderful. They were very knowledgeable about the

disease. If you

can find an Infectious Disease doctor in Israel, which I am sure you can, I

would try and get

her in. Good luck

it goes down fast. The more you wait, the

longer it takes to go down. The last fever was Tuesday. I gave her

a predinsone at 19:30 and by 21:00, the fever was down, and her

throat stopped hurting. Magic !

In any case, we now have an appointment with the Rheumatolgy clinic

at the Schneider Children's hospital near by and we will confirm our

suspicions. It is a big shame pediatricians don't know about this

syndrome and are not open to listen to parents. We could have spared

Roni 4 years of suffering by knowing what she had early on.

We are still new to all of this and I would appreciate any tips, help

and support you all have to give. And of course, I will be more than

happy to reciprocate to anyone who needs anything.

Orit

[Guest guest]

Hi Erez,

Thank you for your reply. Yes, I have heard of Dr. Padeh, and we will

eventually go to him. We just happened to have the appt. at Schneider

because of Roni's Rheumatic fever. By the way, the diagnosis was

confirmed and we decided to just leave things as they are and simply

document Roni's fevers and give predinsone each time. We will re-

evaluate everything in 3 months.

Tell me, what treatment are you giving Tom? What did Dr. Padeh advise

you?

Thank you!

Orit

[Guest guest]

Hi ,

Thank you for your reply. We went to one Rheumatology expert on

Monday and she doesn't like the idea of surgery as of yet. There is

another world-known specialist in Israel whom we will go to soon and

see what he has to say.

Good luck to us all,

Orit

[Guest guest]

Hi ,

Thank you for your reply. We went to a rheumatology expert on Monday

and the diagnosis was confirmed. What did the infecious disease

doctor have to say about ?

Orit

[Guest guest]

Hi Orit,

Dr. Padeh advised to treat the attacks with Betnesol. He also

recommended to stop the " preventative " antibiotics treatment and

overruled the option of tonsillectomy.

Please feel free to email me directly to erez_einav@....

Good luck!

Erez

[Guest guest]

Tara- make sure you take all test results with you and a calendar that shows her

fever episodes. If this Dr. Can't help you- you may want to see an immunologist-

that is who diagnosed my daughter. Like your daughter, my daughter Cam's only

symptoms were fevers and swollen glands- a bit of a sore throat sometimes. They

put my daughter on citimitide sp.? Generic for Tagemet- we have been fever free

for over a month- first time since she was 6 months old- she is 2.5 If-When she

gets a fever we do predisone and it works Good luck and don't give up- I live

in the Chicago area with tons of Dr and specialists and it still took 1.5 years

for a diagnosis!!

Sent on the Sprint® Now Network from my BlackBerry®

[Guest guest]

Tara- make sure you take all test results with you and a calendar that shows her

fever episodes. If this Dr. Can't help you- you may want to see an immunologist-

that is who diagnosed my daughter. Like your daughter, my daughter Cam's only

symptoms were fevers and swollen glands- a bit of a sore throat sometimes. They

put my daughter on citimitide sp.? Generic for Tagemet- we have been fever free

for over a month- first time since she was 6 months old- she is 2.5 If-When she

gets a fever we do predisone and it works Good luck and don't give up- I live

in the Chicago area with tons of Dr and specialists and it still took 1.5 years

for a diagnosis!!

Sent on the Sprint® Now Network from my BlackBerry®

[Guest guest]

Hi Tara,

I am sorry I don't live near Abilene, but your child sounds just like

mine. Same symptoms, plus mouth and tongue sores and stomach aches and

vomiting some times. I hadn't been writing because she is just

recovering from the 2nd episode this month (17 days apart). This

second episode seems milder for some reason. The fever didn't go as

high as in the first one of this month (101.2 highest this time,

105.4 the time before that). During the summer she only had 1 episode

(since mid May until July and then in August she only had the mouth

sores). My daughter doesn't eat much either during these episodes. She

actually spits most of her food or gags when trying to swallow, her

favorite foods don't work either and then trying new foods can be a

challenge, since she doesn't want to eat.

We haven't got the diagnosis either, last time I took her to

Children's Hospital Urgent care we saw an infectious disease dr. who

told me that she didn't 'fit' the profile because her fevers didn't

occur within 21-28 days so they weren't predictable. So, she couldn't

have . I've done some reading on medical journals and even here,

and it seems that in some cases it varies. There are some kids that

get them every 2-2.5 weeks or 3-4 weeks. I almost hit the roof. I am

waiting for the flu to 'pass' just because I am afraid that if I take

her to see the dr. to continue following up on the issue she would

catch something.

I would like to know how your appointment with the ENT go. I hope that

he was helpful and that he gave you some answers.

Uxia

[Guest guest]

Glad to hear from you.  Members are welcome lurk, as many do, learning by reading what others have to say or ask, or to jump right in and start asking questions.  I suspect that, as you get started doing it yourself, you may be asking more questions, and we look forward to hearing more from you.

Have fun,Pete-- Van Deusenpvdtlc@...http://www.brain-trainer.comUSA 305 433 3160BR 47 3346 6235

The Learning Curve, Inc.

On Sat, Jan 23, 2010 at 5:59 PM, chrishelvey001 <chelvey@...> wrote:

 

Hello everyone,

I wanted to introduce myself to the group. I've been lurking around here everyday for quite a while now and thought I should at least stand up and say " I'm here. "

My EEG and HEG equipment is hopefully at the UPS box today. I'm anxious to work with my own equipment.

I wanted to say how impressed I am with the group and especially how degreed clinical professionals, home trainers, and other practitioners come together without too many egos stating what's what.

Listening to responses has helped to reinforce, from a different source, what I have learned while working for someone else in the field who is doing this. (A turn-key business I shall not name.) I have seen many people benefit from this technology and I hope to help my wife (chronic migraines,) myself (OCD (a theta head,)) and others too.

Having been an implementer of technologies over the past 25 years, I get more excited the " deeper " I go with this, with an understanding that there is still so much mystery in the brain. (As there is in theoretical physics, etc.) I like hearing what works for people, while knowing it (a particular montage) may not work for another (that has been MY experience so far.) There is a bit of an art to it as well as the science, wouldn't you say?

Thanks to everyone, especially Pete, who came highly recommended by a friend.

Regards,

Helvey

[Guest guest]

Oh , I am so sorry for what your wife had to endure. Let me just quickly say, in our experience, things are so much different from that now! The roughest of the procedures has been the MRI's actually. The first few I had to fight to have a med called Versed (pronounced ver-said). It is like Vallium and has an amnesiatic affect. This isn't to say your child won't fight the needles, but at least she won't remember them. During the casting procedure, they give Grace Versed before taking her from the room. We walk down to "pre-op" with her and she is always very relaxed by the time they take her from us. Then they administer "gas" to knock her out before they intubate and ultimately put her IV in. There has only been once that Grace was awake and crying before I was able to get to the post-op area following her procedure. Usually they call

me to come down before she has woke up at all.

We go to Shriners. I would highly recommend getting services through them if you aren't already. They deal with kids in this situation EVERY day and know how best to make the process as smooth as possible for both the parents and the child.

The best thing you can do for your child is advocate. If you think they need a pre-sedation med, ask for it, insist on it. One way or the other!

My daughter's story should be up on the website soon, but if you'd like to hear it sooner, let me know.

Jane, Portland, OR, mom to...

Grace, 4 yrs old, moderate Omphalocele (containing 3/4 of her liver) repaired at birth, congenital scoliosis with hemi-vertebrae (removed 9/09, followed by 4 casts and now in a brace, hoping to go back to a cast by xmas), neurogenic bladder of unknown cause (having a Mitrofanoff placed sometime in the next year), my angel, my baby, my goofy one, lol.

Grant, almost 8 years, chronic constipation, ADHD and Oppositioanl Defiance Disorder, but an AWESOME student and smart as a whip!

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

Wow. You came to the right place. I am so sorry this has been so hard on you. I

am still fairly new to this whole thing. My daughter is almost 2 and in her

first cast. We did do the MRI a few months ago.

The MRI was the worst part for us. The hospital didn't do anything other than

wrap her up in sheets and start the IV. I had to leave the room she was

screaming so much and I didn't want her to see me crying. It was awful. She did

great for the actual MRI and woke up great from the meds.

As for the cast, we are at Shriners and they are AMAZING. They didn't start her

IV until after she was out. They gave her meds (Versed) to help with the

separation. We got to stay with her through pre-op. She didn't cry at all for

that part of it. The waking up from the anesthesia is tough. I am not going to

lie. That was hard. The first week in cast was an adjustment but she bounced

back and is doing great.

The biggest thing is do the MRI to rule out any tehtered cord or other issues. I

was terrified of all the thing our ortho was concerned about but relieved that

the MRI was negative. I have also learned that casting can be harmful if there

are other issues present.

Our local ped wanted to wait and see with a 40* curve and in the 2 months it

took to get a cast date at Shriners, my daughter's curve was up to 52*. Our

local ped also wanted to do a Risser cast which wouldn't help with the rotation

and could cause chest deformities based on what I read. Mehta/EDF casting helps

gently correct the spine. There is tons of info here and people who know a lot

more than I do. I still feel in the dark a lot of the time and feel like I am

learning as we go. I know it is hard but I also know that I am doing the very

best thing I can for my daughter. You can do this and you will get through it.

,

Kiya, 22 months, 52* out of cast down to 15* in 1st cast at Shriner's Chicago

>

> Hello everyone,

>

> The quick introduction: I'm the father of a 2 1/2 year old girl named

> . We're with Rady Children's Hospital in San Diego. At 6 months old

> (August 2008), showed a 10 degree curve. Last year (November 2009),

> she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her

> doctor is recommending an MRI and CT Scan, and Casting. We are visiting her

> pediatrician tomorrow to discuss everything and get her thoughts.

>

> My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

> birth. She endured bracing growing up, and at 9 years old, had two

> surgeries at ish Rites in Texas (1982).

>

> We're dealing with a lot of issues - not only what is about to go

> through, but dealing with all of the issues my wife has, reliving the

> experience. It's hard to separate herself from 's experience. A lot

> of time growing up was dealing with doctors that wanted to 'practice'

> medicine on her. She remembers vividly getting intubated, being put out,

> being left in hallways, and being taken from her parents, kicking and

> screaming. So, as we enter this experience with , it's hard to not

> feel like those will also be 's experiences. We're worried all of

> that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan,

> bracing vs casting, etc. There are anger issues related to what she went

> through, and how her parents handled it.

>

> The longer story:

>

> Prior to birth, my wife received an ultrasound that showed no evidence of

> scoliosis (as I said, she was diagnosed at birth). At 3 months old,

> was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

> torticollis. Dermatologist watched the JXG (curious if anyone else has

> experience with JXG?), and we did physical therapy for the hip dysplasia and

> torticollis. At 6 months, we did an x-ray, and since she was only at 10

> degrees we did a 'let's watch and see what happens with the scoliosis'.

>

> In November of 2009, we did another x-ray, and was at 15 degrees.

> The doctor agreed to continue with a 'wait and see' approach, but referred

> us to a geneticist for additional review.

>

> February of 2010, we did visit the geneticist. We were pretty disappointed

> in the appointment. He felt that 's scoliosis wasn't genetic, and

> that she wouldn't progress any further. I've pinged them a few times for

> their findings, but they haven't been forthcoming.

>

> This past month we went to visit the ortho, and got the x-ray showing 47

> degrees. At that point, her doctor is recommending casting (no further info

> yet on what kind of casting), an MRI and a CT.

>

> As I mentioned before, these are difficult things for us to accept, not just

> from the 'we don't want anything to happen to our child', but from the

> perspective of my wife's experiences. We are scared of the procedures

> (casting, MRI, CT), and of putting her under.

>

> Let me end it by there that I'm interesting in reading about your

> experiences, and appreciate any advice/guidance that you can provide.

>

>

>

[Guest guest]

,

Hello and welcome to this great group! I'm so sorry to hear what your wife went

thru. My son is actually treated at ish Rite in Dallas and I can promise

you things are much better now than they were then. They give versed to make

them not care or remember being taken from their parents. The gas is

administered and they are totally asleep when intubated and when the iv is put

in. We were always there when he woke up.

If you are in California and you want Mehta casting which is the best casting

method you should go to a Shriners. I think the closest to you that does Mehta

casting is in Salt Lake City.

I promise cast life is very doable and could actually prevent any surgeries in

the future depending on her situation of course. My sons curve was at 50

degrees when we started casting and now he is on his 7th and last cast and is at

4 degrees! He can do everything he would do w/o the cast except bathing and

playing in the sand.

Time is of the essence! Many of us got the wait and see answer from our ortho

docs and this is a terrible waste of precious growing time.

Please visit the home page www.infantilescoliosis.org and read many parent

success stories and other helpful links. Also read Dr Mehta's article growth as

a corrective force. Then you will better understand her method.

Again, welcome and please ask any questions you may have.

mom to Isaiah

Toney <gotmaps@...> wrote:

>Hello everyone,

>

>The quick introduction: I'm the father of a 2 1/2 year old girl named

>. We're with Rady Children's Hospital in San Diego. At 6 months old

>(August 2008), showed a 10 degree curve. Last year (November 2009),

>she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her

>doctor is recommending an MRI and CT Scan, and Casting. We are visiting her

>pediatrician tomorrow to discuss everything and get her thoughts.

>

>My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

>birth. She endured bracing growing up, and at 9 years old, had two

>surgeries at ish Rites in Texas (1982).

>

>We're dealing with a lot of issues - not only what is about to go

>through, but dealing with all of the issues my wife has, reliving the

>experience. It's hard to separate herself from 's experience. A lot

>of time growing up was dealing with doctors that wanted to 'practice'

>medicine on her. She remembers vividly getting intubated, being put out,

>being left in hallways, and being taken from her parents, kicking and

>screaming. So, as we enter this experience with , it's hard to not

>feel like those will also be 's experiences. We're worried all of

>that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan,

>bracing vs casting, etc. There are anger issues related to what she went

>through, and how her parents handled it.

>

>The longer story:

>

>Prior to birth, my wife received an ultrasound that showed no evidence of

>scoliosis (as I said, she was diagnosed at birth). At 3 months old,

>was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

>torticollis. Dermatologist watched the JXG (curious if anyone else has

>experience with JXG?), and we did physical therapy for the hip dysplasia and

>torticollis. At 6 months, we did an x-ray, and since she was only at 10

>degrees we did a 'let's watch and see what happens with the scoliosis'.

>

>In November of 2009, we did another x-ray, and was at 15 degrees.

>The doctor agreed to continue with a 'wait and see' approach, but referred

>us to a geneticist for additional review.

>

>February of 2010, we did visit the geneticist. We were pretty disappointed

>in the appointment. He felt that 's scoliosis wasn't genetic, and

>that she wouldn't progress any further. I've pinged them a few times for

>their findings, but they haven't been forthcoming.

>

>This past month we went to visit the ortho, and got the x-ray showing 47

>degrees. At that point, her doctor is recommending casting (no further info

>yet on what kind of casting), an MRI and a CT.

>

>As I mentioned before, these are difficult things for us to accept, not just

>from the 'we don't want anything to happen to our child', but from the

>perspective of my wife's experiences. We are scared of the procedures

>(casting, MRI, CT), and of putting her under.

>

>Let me end it by there that I'm interesting in reading about your

>experiences, and appreciate any advice/guidance that you can provide.

>

>

[Guest guest]

Hey --

Welcome =) My heart breaks for what your wife had to go through. I cant imagine and I can completely understand not wanting her baby to have any experiences close to that. We live in NC...and go to the shriners in SC. We have had nothing but EXCELLENT experiences with them. They are some of the best people I have ever met! Seriously---if they would treat adults...I would go there! But like the other ladies have said...they give Logan Versed and that helps a lot. They keep a mask on during the procedure and they put the IV in once he is asleep. Waking up is always fun...but he gets through it with a sippy cup and the wiggles =)

There is no overnight stay nor do they advocate anything away from mom and dad.....They actually rely on the parents to do more with the child...I think its to keep them as calm as possible. We are new to the casting world as well. Logan goes for his 5th in Novemeber. We are grateful for the casting...it has been the absolute best thing for him. He has responded in an amazing way. Good luck on your journey and assure your wife that things have gotten better and she/you are ALWAYS in control of what treatment your child receives.

Logan's mama

(45 down to 0, waiting on 5th cast, 16 months old)

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 5:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

Also, a lot of posts have been going into spam folders for some reason so you

may check there too for responses...

Toney <gotmaps@...> wrote:

>Hello everyone,

>

>The quick introduction: I'm the father of a 2 1/2 year old girl named

>. We're with Rady Children's Hospital in San Diego. At 6 months old

>(August 2008), showed a 10 degree curve. Last year (November 2009),

>she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her

>doctor is recommending an MRI and CT Scan, and Casting. We are visiting her

>pediatrician tomorrow to discuss everything and get her thoughts.

>

>My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

>birth. She endured bracing growing up, and at 9 years old, had two

>surgeries at ish Rites in Texas (1982).

>

>We're dealing with a lot of issues - not only what is about to go

>through, but dealing with all of the issues my wife has, reliving the

>experience. It's hard to separate herself from 's experience. A lot

>of time growing up was dealing with doctors that wanted to 'practice'

>medicine on her. She remembers vividly getting intubated, being put out,

>being left in hallways, and being taken from her parents, kicking and

>screaming. So, as we enter this experience with , it's hard to not

>feel like those will also be 's experiences. We're worried all of

>that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan,

>bracing vs casting, etc. There are anger issues related to what she went

>through, and how her parents handled it.

>

>The longer story:

>

>Prior to birth, my wife received an ultrasound that showed no evidence of

>scoliosis (as I said, she was diagnosed at birth). At 3 months old,

>was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

>torticollis. Dermatologist watched the JXG (curious if anyone else has

>experience with JXG?), and we did physical therapy for the hip dysplasia and

>torticollis. At 6 months, we did an x-ray, and since she was only at 10

>degrees we did a 'let's watch and see what happens with the scoliosis'.

>

>In November of 2009, we did another x-ray, and was at 15 degrees.

>The doctor agreed to continue with a 'wait and see' approach, but referred

>us to a geneticist for additional review.

>

>February of 2010, we did visit the geneticist. We were pretty disappointed

>in the appointment. He felt that 's scoliosis wasn't genetic, and

>that she wouldn't progress any further. I've pinged them a few times for

>their findings, but they haven't been forthcoming.

>

>This past month we went to visit the ortho, and got the x-ray showing 47

>degrees. At that point, her doctor is recommending casting (no further info

>yet on what kind of casting), an MRI and a CT.

>

>As I mentioned before, these are difficult things for us to accept, not just

>from the 'we don't want anything to happen to our child', but from the

>perspective of my wife's experiences. We are scared of the procedures

>(casting, MRI, CT), and of putting her under.

>

>Let me end it by there that I'm interesting in reading about your

>experiences, and appreciate any advice/guidance that you can provide.

>

>

[Guest guest]

Hello and welcome to CAST! We are in Los Angeles and we travel to Salt Lake City to Shriners Hospital for Children. I do not think anyone is San Diego has hand on Mehta casting training. I am just a parent, but that is my understanding at this time.I am so sorry for all that your wife has gone through and for what you are going through now. This is the worst part, it really is. Casting is very do-able and harder on the parents than the child. I don't think our son is at all traumatized, the hospital in SLC has been the best medical experience of our lives. We just wish we had begun sooner, but it is still the very best option and worth every moment.Time is vital to catch growth spurts and use growth as a natural corrective force. In our case, 3-6 weeks would probably

made a world of difference in the length of treatment time for our son, but with progressive cases, bracing often does not hold the curve. That could lead to surgery much younger than the age your wife had it. Generally, the longer you put off surgery, the better, and casting is non-surgical and temporary. Once surgery is begun, there is "no going back". I understand the anger. I have not heard of a CT scan on this group, I think it may be too much radiation- much more than X-ray, please someone correct me if I'm wrong. Is there a specific reason for a CT? An MRI is needed to rule out other issues, like tethered cord, etc.Most orthos and pediatricians do not know about his condition or proper treatment. You can read our son Bexon's Story on www.GirltoMom.com - click on Bexon's Story at the top of the home page. Hang in there, it gets better!

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.

My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went

through, and how her parents handled it.

The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.

In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.

This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.

Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

P.S.You can call and send (email or FedEx) your current X-rays to Angie Livingston in the meantime, she is the Care Coordinator who schedules all of the casting appts. at SLC Shriners. It can take a couple of months to get in, and you could always cancel, so there is no real downside to getting in the system. Your local Shrine may even pay some travel costs, the hospital does not charge anything at all for treatment (we have excellent insurance and have never been charged).Angie's work phone is 801-536-3649Her email is ALivingston@... Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 7:49:33 PMSubject: Re: Introduction

Hello and welcome to CAST! We are in Los Angeles and we travel to Salt Lake City to Shriners Hospital for Children. I do not think anyone is San Diego has hand on Mehta casting training. I am just a parent, but that is my understanding at this time.I am so sorry for all that your wife has gone through and for what you are going through now. This is the worst part, it really is. Casting is very do-able and harder on the parents than the child. I don't think our son is at all traumatized, the hospital in SLC has been the best medical experience of our lives. We just wish we had begun sooner, but it is still the very best option and worth every moment.Time is vital to catch growth spurts and use growth as a natural corrective force. In our case, 3-6 weeks would probably

made a world of difference in the length of treatment time for our son, but with progressive cases, bracing often does not hold the curve. That could lead to surgery much younger than the age your wife had it. Generally, the longer you put off surgery, the better, and casting is non-surgical and temporary. Once surgery is begun, there is "no going back". I understand the anger. I have not heard of a CT scan on this group, I think it may be too much radiation- much more than X-ray, please someone correct me if I'm wrong. Is there a specific reason for a CT? An MRI is needed to rule out other issues, like tethered cord, etc.Most orthos and pediatricians do not know about his condition or proper treatment. You can read our son Bexon's Story on www.GirltoMom.com - click on Bexon's Story at the top of the home page. Hang in there, it gets better!

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.

My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went

through, and how her parents handled it.

The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.

In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.

This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.

Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

My son had a CT scan on his lungs to test his lung capacity. But that was only one time and to get a baseline. Not sure if anyone else has had to do this. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 9:49:33 PMSubject: Re: Introduction

Hello and welcome to CAST! We are in Los Angeles and we travel to Salt Lake City to Shriners Hospital for Children. I do not think anyone is San Diego has hand on Mehta casting training. I am just a parent, but that is my understanding at this time.I am so sorry for all that your wife has gone through and for what you are going through now. This is the worst part, it really is. Casting is very do-able and harder on the parents than the child. I don't think our son is at all traumatized, the hospital in SLC has been the best medical experience of our lives. We just wish we had begun sooner, but it is still the very best option and worth every moment.Time is vital to catch growth spurts and use growth as a natural corrective force. In our case, 3-6 weeks would probably made a world of difference in the length of treatment time for our son, but

with progressive cases, bracing often does not hold the curve. That could lead to surgery much younger than the age your wife had it. Generally, the longer you put off surgery, the better, and casting is non-surgical and temporary. Once surgery is begun, there is "no going back". I understand the anger. I have not heard of a CT scan on this group, I think it may be too much radiation- much more than X-ray, please someone correct me if I'm wrong. Is there a specific reason for a CT? An MRI is needed to rule out other issues, like tethered cord, etc.Most orthos and pediatricians do not know about his condition or proper treatment. You can read our son Bexon's Story on www.GirltoMom.com - click on Bexon's Story at the top of the home page. Hang in there, it gets better!

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

Thank you everyone for the warm welcomes, and the wisdom you've shared.  Reading your notes has given me hope, and scared me a little.  But not in a bad way.  It's definitely opened my eyes to a couple of things.  I shared a few things last night, and hearing about your experiences definitely helps.

I talk to our ortho's nurse this morning.  And then we're going to visit 's pediatrician just to make sure she's up to date on what's going on, get some more questions answered (including seeking a second opinion, and where we might be able to go for that).

A couple more questions for everyone - - Anyone present with torticollis at all?- Someone mentioned that a CT Scan seemed unusual.  How many of you have gotten a CT Scan?- I buried this in my introduction.  Anyone have experience with Juvenile Xanthogranuloma (JXG)?

Thanks,Father to , 2 1/2 years old, 47*, just beginning the journey 

From: Toney <gotmaps@...>infantile scoliosis treatment

Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction 

Hello everyone,The quick introduction:  I'm the father of a 2 1/2 year old girl named .  We're with Rady Children's Hospital in San Diego.  At 6 months old (August 2008), showed a 10 degree curve.  Last year (November 2009), she was at 15 degrees.  This month, she was x-rayed at 47 degrees.  Her doctor is recommending an MRI and CT Scan, and Casting.  We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.

My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth.  She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience.  It's hard to separate herself from 's experience.  A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her.  She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming.  So, as we enter this experience with , it's hard to not feel like those will also be 's experiences.  We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc.  There are anger issues related to what she went through, and how her parents handled it.

The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth).  At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis.  Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis.  At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees.  The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.

February of 2010, we did visit the geneticist.  We were pretty disappointed in the appointment.  He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further.  I've pinged them a few times for their findings, but they haven't been forthcoming.

This past month we went to visit the ortho, and got the x-ray showing 47 degrees.  At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences.  We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

My son had a CT scan on his lungs to check his lung capacity. But only once and when he was first diagnosed (around 18 months). Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Thu, October 21, 2010 9:23:00 AMSubject: Re: Introduction

Thank you everyone for the warm welcomes, and the wisdom you've shared. Reading your notes has given me hope, and scared me a little. But not in a bad way. It's definitely opened my eyes to a couple of things. I shared a few things last night, and hearing about your experiences definitely helps.I talk to our ortho's nurse this morning. And then we're going to visit 's pediatrician just to make sure she's up to date on what's going on, get some more questions answered (including seeking a second opinion, and where we might be able to go for that).A couple more questions for everyone - - Anyone present with torticollis at all?- Someone mentioned that a CT Scan seemed unusual. How many of you have gotten a CT Scan?- I buried this in my introduction. Anyone have experience with Juvenile Xanthogranuloma (JXG)?Thanks,Father to , 2 1/2 years old,

47*, just beginning the journey

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

Hi ,

I hadn't heard of JXG, so sorry, I'm of no help there.

As far as CT scans, it is a case by case basis kind of thing. We did have a CT scan, it was right before her spine surgery though. While CT's and MRI's are very similar, they can see different things better. So in our case, our doctor wanted to see the specific area of Grace's spine where he was going to remove her partial vertebrae so he would have as few surprises when he got in there. So CT's show the bones better, like a specialized x-ray, yes this then include radiation exposure just like an x-ray, only more concentrated because there is more exposure. And MRI looks more at the soft tissues and nerves. While they can still see the bones, and determine if there is an abnormality, an MRI might not give all the bone related info they need. However, an MRI is best when looking for a tethered cord as you can clearly see the spinal cord easier.

I believe some of the kiddo's here have had torticollis, but torticollis doesn't always result in scoliosis. Many many cases of torticollis resolve with physical therapy.

On the x-rays you've had, has there been any sign of fusion or other anomalies of your daughter's spine? In other words, are they certain it is Idiopathic scoliosis and not congenital? It is most important to figure that out first as it will give you a completely different journey to travel if its one over the other.

Jane

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Thu, October 21, 2010 7:23:00 AMSubject: Re: Introduction

Thank you everyone for the warm welcomes, and the wisdom you've shared. Reading your notes has given me hope, and scared me a little. But not in a bad way. It's definitely opened my eyes to a couple of things. I shared a few things last night, and hearing about your experiences definitely helps.I talk to our ortho's nurse this morning. And then we're going to visit 's pediatrician just to make sure she's up to date on what's going on, get some more questions answered (including seeking a second opinion, and where we might be able to go for that).A couple more questions for everyone - - Anyone present with torticollis at all?- Someone mentioned that a CT Scan seemed unusual. How many of you have gotten a CT Scan?- I buried this in my introduction. Anyone have experience with Juvenile Xanthogranuloma (JXG)?Thanks,Father to , 2 1/2 years old,

47*, just beginning the journey

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

,

My son and many others on here have children with Torticollis. We had some PT

for it and it is still present but I have noticed with the casting and

improvement in his Cobb angle the Torticollis has improved as well. My son had

a CT scan as part of a study to check lung function and it was fine at 50

degrees. The important test to be done before casting is the MRI to rule out

underlying conditions such as a therthed cord, a srynx or a chiari malformation

which my son had. Casting is hard the first time around but then it just

becomes a way of life. Promise!

Please ask if you have more questions.

Toney <gotmaps@...> wrote:

>Thank you everyone for the warm welcomes, and the wisdom you've shared.

>Reading your notes has given me hope, and scared me a little. But not in a

>bad way. It's definitely opened my eyes to a couple of things. I shared a

>few things last night, and hearing about your experiences definitely helps.

>

>I talk to our ortho's nurse this morning. And then we're going to visit

>'s pediatrician just to make sure she's up to date on what's going

>on, get some more questions answered (including seeking a second opinion,

>and where we might be able to go for that).

>

>A couple more questions for everyone -

>

>- Anyone present with torticollis at all?

>- Someone mentioned that a CT Scan seemed unusual. How many of you have

>gotten a CT Scan?

>- I buried this in my introduction. Anyone have experience with Juvenile

>Xanthogranuloma (JXG)?

>

>Thanks,

>

>

>Father to , 2 1/2 years old, 47*, just beginning the journey

>

>

>

>>

>> ------------------------------

>> *From:* Toney <gotmaps@...>

>> *To:* infantile scoliosis treatment

>> *Sent:* Wed, October 20, 2010 2:05:52 PM

>> *Subject:* Introduction

>>

>>

>>

>> Hello everyone,

>>

>> The quick introduction: I'm the father of a 2 1/2 year old girl named

>> . We're with Rady Children's Hospital in San Diego. At 6 months old

>> (August 2008), showed a 10 degree curve. Last year (November 2009),

>> she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her

>> doctor is recommending an MRI and CT Scan, and Casting. We are visiting her

>> pediatrician tomorrow to discuss everything and get her thoughts.

>>

>> My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

>> birth. She endured bracing growing up, and at 9 years old, had two

>> surgeries at ish Rites in Texas (1982).

>>

>> We're dealing with a lot of issues - not only what is about to go

>> through, but dealing with all of the issues my wife has, reliving the

>> experience. It's hard to separate herself from 's experience. A lot

>> of time growing up was dealing with doctors that wanted to 'practice'

>> medicine on her. She remembers vividly getting intubated, being put out,

>> being left in hallways, and being taken from her parents, kicking and

>> screaming. So, as we enter this experience with , it's hard to not

>> feel like those will also be 's experiences. We're worried all of

>> that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan,

>> bracing vs casting, etc. There are anger issues related to what she went

>> through, and how her parents handled it.

>>

>> The longer story:

>>

>> Prior to birth, my wife received an ultrasound that showed no evidence of

>> scoliosis (as I said, she was diagnosed at birth). At 3 months old,

>> was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

>> torticollis. Dermatologist watched the JXG (curious if anyone else has

>> experience with JXG?), and we did physical therapy for the hip dysplasia and

>> torticollis. At 6 months, we did an x-ray, and since she was only at 10

>> degrees we did a 'let's watch and see what happens with the scoliosis'.

>>

>> In November of 2009, we did another x-ray, and was at 15 degrees.

>> The doctor agreed to continue with a 'wait and see' approach, but referred

>> us to a geneticist for additional review.

>>

>> February of 2010, we did visit the geneticist. We were pretty disappointed

>> in the appointment. He felt that 's scoliosis wasn't genetic, and

>> that she wouldn't progress any further. I've pinged them a few times for

>> their findings, but they haven't been forthcoming.

>>

>> This past month we went to visit the ortho, and got the x-ray showing 47

>> degrees. At that point, her doctor is recommending casting (no further info

>> yet on what kind of casting), an MRI and a CT.

>>

>> As I mentioned before, these are difficult things for us to accept, not

>> just from the 'we don't want anything to happen to our child', but from the

>> perspective of my wife's experiences. We are scared of the procedures

>> (casting, MRI, CT), and of putting her under.

>>

>> Let me end it by there that I'm interesting in reading about your

>> experiences, and appreciate any advice/guidance that you can provide.

>>

>>

>>

>>

>>

>>

[Guest guest]

,Our doctor did do an CT Scan on but that was because he had never heard of IS before and his initial thought was that had a tumor. The lady that did the scan knew right away that it was not tumor, but went ahead and did it anyway and it cost around $3,000. My gut told me it was scoli, but I just did what the doctor said yet again and it cost us. You could ask the ordering doctor why they are doing the CT, that is my suggestion. Beth RettingerMother of In Third Cast From SLCFrom: Toney <gotmaps@...>Subject: Re: Introductioninfantile scoliosis treatment Date: Thursday, October 21, 2010, 10:23 AM

Thank you everyone for the warm welcomes, and the wisdom you've shared. Reading your notes has given me hope, and scared me a little. But not in a bad way. It's definitely opened my eyes to a couple of things. I shared a few things last night, and hearing about your experiences definitely helps.

I talk to our ortho's nurse this morning. And then we're going to visit 's pediatrician just to make sure she's up to date on what's going on, get some more questions answered (including seeking a second opinion, and where we might be able to go for that).

A couple more questions for everyone - - Anyone present with torticollis at all?- Someone mentioned that a CT Scan seemed unusual. How many of you have gotten a CT Scan?- I buried this in my introduction. Anyone have experience with Juvenile Xanthogranuloma (JXG)?

Thanks,Father to , 2 1/2 years old, 47*, just beginning the journey

From: Toney <gotmaps@...>infantile scoliosis treatment

Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.

My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.

The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.

February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.

This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

My daughter was diagnosed with torticollis at 14 months of age and we went to

physical therapy to get in resolved. It is actually because of our physical

therapist that scoliosis was even mentioned. We worked with the therapist for a

few months on various exercises and by 18 months her torticollis had resolved.

Good luck on your journey. So much happening so fast. I hope you find the

answers that you need.

Kiya, 22 months

>

> Thank you everyone for the warm welcomes, and the wisdom you've shared.

> Reading your notes has given me hope, and scared me a little. But not in a

> bad way. It's definitely opened my eyes to a couple of things. I shared a

> few things last night, and hearing about your experiences definitely helps.

>

> I talk to our ortho's nurse this morning. And then we're going to visit

> 's pediatrician just to make sure she's up to date on what's going

> on, get some more questions answered (including seeking a second opinion,

> and where we might be able to go for that).

>

> A couple more questions for everyone -

>

> - Anyone present with torticollis at all?

> - Someone mentioned that a CT Scan seemed unusual. How many of you have

> gotten a CT Scan?

> - I buried this in my introduction. Anyone have experience with Juvenile

> Xanthogranuloma (JXG)?

>

> Thanks,

>

>

> Father to , 2 1/2 years old, 47*, just beginning the journey

>

>

>

> >

> > ------------------------------

> > *From:* Toney <gotmaps@...>

> > *To:* infantile scoliosis treatment

> > *Sent:* Wed, October 20, 2010 2:05:52 PM

> > *Subject:* Introduction

> >

> >

> >

> > Hello everyone,

> >

> > The quick introduction: I'm the father of a 2 1/2 year old girl named

> > . We're with Rady Children's Hospital in San Diego. At 6 months old

> > (August 2008), showed a 10 degree curve. Last year (November 2009),

> > she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her

> > doctor is recommending an MRI and CT Scan, and Casting. We are visiting her

> > pediatrician tomorrow to discuss everything and get her thoughts.

> >

> > My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

> > birth. She endured bracing growing up, and at 9 years old, had two

> > surgeries at ish Rites in Texas (1982).

> >

> > We're dealing with a lot of issues - not only what is about to go

> > through, but dealing with all of the issues my wife has, reliving the

> > experience. It's hard to separate herself from 's experience. A lot

> > of time growing up was dealing with doctors that wanted to 'practice'

> > medicine on her. She remembers vividly getting intubated, being put out,

> > being left in hallways, and being taken from her parents, kicking and

> > screaming. So, as we enter this experience with , it's hard to not

> > feel like those will also be 's experiences. We're worried all of

> > that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan,

> > bracing vs casting, etc. There are anger issues related to what she went

> > through, and how her parents handled it.

> >

> > The longer story:

> >

> > Prior to birth, my wife received an ultrasound that showed no evidence of

> > scoliosis (as I said, she was diagnosed at birth). At 3 months old,

> > was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

> > torticollis. Dermatologist watched the JXG (curious if anyone else has

> > experience with JXG?), and we did physical therapy for the hip dysplasia and

> > torticollis. At 6 months, we did an x-ray, and since she was only at 10

> > degrees we did a 'let's watch and see what happens with the scoliosis'.

> >

> > In November of 2009, we did another x-ray, and was at 15 degrees.

> > The doctor agreed to continue with a 'wait and see' approach, but referred

> > us to a geneticist for additional review.

> >

> > February of 2010, we did visit the geneticist. We were pretty disappointed

> > in the appointment. He felt that 's scoliosis wasn't genetic, and

> > that she wouldn't progress any further. I've pinged them a few times for

> > their findings, but they haven't been forthcoming.

> >

> > This past month we went to visit the ortho, and got the x-ray showing 47

> > degrees. At that point, her doctor is recommending casting (no further info

> > yet on what kind of casting), an MRI and a CT.

> >

> > As I mentioned before, these are difficult things for us to accept, not

> > just from the 'we don't want anything to happen to our child', but from the

> > perspective of my wife's experiences. We are scared of the procedures

> > (casting, MRI, CT), and of putting her under.

> >

> > Let me end it by there that I'm interesting in reading about your

> > experiences, and appreciate any advice/guidance that you can provide.

> >

> >

> >

> >

> >

> >

>

[Guest guest]

Logan had torticollis ---we had PT for that...

Because to the torticollis...he got a flat spot on his head....therefore having to go into a helmet. Yes--while he was in the cast also...

He was our little football player for a while!lol

Logan's mama (45 down to 0, waiting for 5th cast, 16 months old)\

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Thu, October 21, 2010 10:23:00 AMSubject: Re: Introduction

Thank you everyone for the warm welcomes, and the wisdom you've shared. Reading your notes has given me hope, and scared me a little. But not in a bad way. It's definitely opened my eyes to a couple of things. I shared a few things last night, and hearing about your experiences definitely helps.I talk to our ortho's nurse this morning. And then we're going to visit 's pediatrician just to make sure she's up to date on what's going on, get some more questions answered (including seeking a second opinion, and where we might be able to go for that).A couple more questions for everyone - - Anyone present with torticollis at all?- Someone mentioned that a CT Scan seemed unusual. How many of you have gotten a CT Scan?- I buried this in my introduction. Anyone have experience with Juvenile Xanthogranuloma (JXG)?Thanks,Father to , 2 1/2 years old,

47*, just beginning the journey

From: Toney <gotmaps@...>infantile scoliosis treatment Sent: Wed, October 20, 2010 2:05:52 PMSubject: Introduction

Hello everyone,The quick introduction: I'm the father of a 2 1/2 year old girl named . We're with Rady Children's Hospital in San Diego. At 6 months old (August 2008), showed a 10 degree curve. Last year (November 2009), she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is recommending an MRI and CT Scan, and Casting. We are visiting her pediatrician tomorrow to discuss everything and get her thoughts.My wife is 37 years old, and was diagnosed with Infantile Scoliosis at birth. She endured bracing growing up, and at 9 years old, had two surgeries at ish Rites in Texas (1982).We're dealing with a lot of issues - not only what is about to go through, but dealing with all of the issues my wife has, reliving the experience. It's hard to separate herself from 's experience. A lot of time growing up was dealing

with doctors that wanted to 'practice' medicine on her. She remembers vividly getting intubated, being put out, being left in hallways, and being taken from her parents, kicking and screaming. So, as we enter this experience with , it's hard to not feel like those will also be 's experiences. We're worried all of that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. There are anger issues related to what she went through, and how her parents handled it.The longer story:Prior to birth, my wife received an ultrasound that showed no evidence of scoliosis (as I said, she was diagnosed at birth). At 3 months old, was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and torticollis. Dermatologist watched the JXG (curious if anyone else has experience with JXG?), and we did physical therapy for the hip dysplasia and

torticollis. At 6 months, we did an x-ray, and since she was only at 10 degrees we did a 'let's watch and see what happens with the scoliosis'.In November of 2009, we did another x-ray, and was at 15 degrees. The doctor agreed to continue with a 'wait and see' approach, but referred us to a geneticist for additional review.February of 2010, we did visit the geneticist. We were pretty disappointed in the appointment. He felt that 's scoliosis wasn't genetic, and that she wouldn't progress any further. I've pinged them a few times for their findings, but they haven't been forthcoming.This past month we went to visit the ortho, and got the x-ray showing 47 degrees. At that point, her doctor is recommending casting (no further info yet on what kind of casting), an MRI and a CT.As I mentioned before, these are difficult things for us to accept, not just from the 'we don't want

anything to happen to our child', but from the perspective of my wife's experiences. We are scared of the procedures (casting, MRI, CT), and of putting her under.Let me end it by there that I'm interesting in reading about your experiences, and appreciate any advice/guidance that you can provide.

[Guest guest]

My son, n, wears a helmet too. He does because his skull is not fully

formed therefore there are still some soft spots exposed. So, yes, I know what

you mean about having a little football players. He is in his 2nd cast now too

and will also need sure steps as well. Poor dude is all covered up...

n's mom (79 down to 30 in 2nd cast/ 19 months old)

>

> Logan had torticollis ---we had PT for that...

> Because to the torticollis...he got a flat spot on his head....therefore

having

> to go into a helmet. Yes--while he was in the cast also...

> He was our little football player for a while!lol

>

> Logan's mama (45 down to 0, waiting for 5th cast, 16 months old)\

>

>

>

>

> ________________________________

> From: Toney <gotmaps@...>

> infantile scoliosis treatment

> Sent: Thu, October 21, 2010 10:23:00 AM

> Subject: Re: Introduction

>

>  

> Thank you everyone for the warm welcomes, and the wisdom you've shared. 

Reading

> your notes has given me hope, and scared me a little.  But not in a bad

way. 

> It's definitely opened my eyes to a couple of things.  I shared a few things

> last night, and hearing about your experiences definitely helps.

>

> I talk to our ortho's nurse this morning.  And then we're going to visit

> 's pediatrician just to make sure she's up to date on what's going on,

> get some more questions answered (including seeking a second opinion, and

where

> we might be able to go for that).

>

> A couple more questions for everyone -

>

> - Anyone present with torticollis at all?

> - Someone mentioned that a CT Scan seemed unusual.  How many of you have

gotten

> a CT Scan?

> - I buried this in my introduction.  Anyone have experience with Juvenile

> Xanthogranuloma (JXG)?

>

> Thanks,

>

>

> Father to , 2 1/2 years old, 47*, just beginning the journey

>

>

>  

>

> >

> >

> ________________________________

> From: Toney <gotmaps@...>

> >infantile scoliosis treatment

> >Sent: Wed, October 20, 2010 2:05:52 PM

> >Subject: Introduction

> >

> > 

> >Hello everyone,

> >

> >The quick introduction:  I'm the father of a 2 1/2 year old girl named

. 

> >We're with Rady Children's Hospital in San Diego.  At 6 months old (August

> >2008), showed a 10 degree curve.  Last year (November 2009), she was

at

> >15 degrees.  This month, she was x-rayed at 47 degrees.  Her doctor is

> >recommending an MRI and CT Scan, and Casting.  We are visiting her

pediatrician

> >tomorrow to discuss everything and get her thoughts.

> >

> >My wife is 37 years old, and was diagnosed with Infantile Scoliosis at

birth. 

> >She endured bracing growing up, and at 9 years old, had two surgeries at

> >ish Rites in Texas (1982).

> >

> >We're dealing with a lot of issues - not only what is about to go

> >through, but dealing with all of the issues my wife has, reliving the

> >experience.  It's hard to separate herself from 's experience.  A

lot of

> >time growing up was dealing with doctors that wanted to 'practice' medicine

on

> >her.  She remembers vividly getting intubated, being put out, being left in

> >hallways, and being taken from her parents, kicking and screaming.  So, as

we

> >enter this experience with , it's hard to not feel like those will

also

> >be 's experiences.  We're worried all of that plus needles, IV,

> >anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. 

> >There are anger issues related to what she went through, and how her parents

> >handled it.

> >

> >The longer story:

> >

> >Prior to birth, my wife received an ultrasound that showed no evidence of

> >scoliosis (as I said, she was diagnosed at birth).  At 3 months old,

was

> >diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and

torticollis. 

> >Dermatologist watched the JXG (curious if anyone else has experience with

JXG?),

> >and we did physical therapy for the hip dysplasia and torticollis.  At 6

months,

> >we did an x-ray, and since she was only at 10 degrees we did a 'let's watch

and

> >see what happens with the scoliosis'.

> >

> >In November of 2009, we did another x-ray, and was at 15 degrees. 

The

> >doctor agreed to continue with a 'wait and see' approach, but referred us to

a

> >geneticist for additional review.

> >

> >February of 2010, we did visit the geneticist.  We were pretty disappointed

in

> >the appointment.  He felt that 's scoliosis wasn't genetic, and that

she

> >wouldn't progress any further.  I've pinged them a few times for their

findings,

> >but they haven't been forthcoming.

> >

> >This past month we went to visit the ortho, and got the x-ray showing 47

> >degrees.  At that point, her doctor is recommending casting (no further info

yet

> >on what kind of casting), an MRI and a CT.

> >

> >As I mentioned before, these are difficult things for us to accept, not just

> >from the 'we don't want anything to happen to our child', but from the

> >perspective of my wife's experiences.  We are scared of the procedures

(casting,

> >MRI, CT), and of putting her under.

> >

> >Let me end it by there that I'm interesting in reading about your

experiences,

> >and appreciate any advice/guidance that you can provide.

> >

> >

> >

> >

> >

>