Re: Looking for more information/experiences

February 8, 2008

Just curious, in what way she think the MRI would harm him?

Noelle (12-2-01)

Ian (8-15-04)

Looking for more

information/experiences

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

February 8, 2008

Infantile scoliosis is very rare. It is not uncommon for a pediatrician to

never have seen a case. My pediatrician has been in practice in the DC area

for about 15 years and has never seen a case.

Kudos to your allergist for being so observant. Sorry to hear about the

allergy, some of us on this board have dealt with allergy issues as well.

Best of luck

(mom to Holly 8 months, IS 16* curve to the right)

_____

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of lmariewilson

Sent: Friday, February 08, 2008 6:01 PM

To: infantile_scoliosis

Subject: Re: Looking for more information/experiences

One more follow-up note. Our son's curve was found by his allergist.

He had an allergic reaction a few weeks ago. The allergist examined

his back and found that the left side was bigger than the other. Our

pediatrician could not determine whether it was positional, muscular

or his spine. Turns out, she has never seen infantile scoliosis in

her 11 years of practice - which was upsetting to hear. In any event,

we then met with the pediatric orthapedist who checked his hips when

he was first born (he was breach).

The xrays were taken while he was lying down, surrounded by foam.

Our son sleeps on his back. We swaddled him when he was firt born,

but he quickly learned to kick himself out, so that only lasted about

a month. We live in the city and do not drive, so he is not in the

carseat all that often. However, he is in the stroller quite a bit.

Not sure if that is considered the same thing.

>

> I am pretty new to all of this, but from what I have read there are

a number

> of prognostic indicators that help to predict the course of IS. A

low RVAD

> score (< 25*) is one of the best predictors so that would be good

> information to have. Other predictors of a good outcome are male

gender,

> curve to the left, under 1 year of age at diagnosis, a curve less

than 30

> degrees, lack of an obvious hump, and low rotation. I also read

that curves

> over 20 degrees warrant an MRI to rule out neurological problems.

IS has an

> 85% natural remission rate, so that is why it is important to look

at other

> information that could help with the prediction of resolving versus

> progressive.

>

> Perhaps your doctor is going by the facts that your son is very

young with a

> relatively small curve at this point. The first doctor we saw also

told us

> to wait 4 months for a follow-up xray, but when we saw Dr. Khoury

yesterday

> he suggested waiting only 6 weeks for a follow-up xray. I

personally would

> have a hard time waiting for 4 months since so much can happen in

that time!

>

> I am curious how you discovered the curve in your 4.5 month old

son? Was

> the xray taken while he has " standing " or lying down (they should

be taken

> lying down, but xrays in little ones are often taken the wrong way

(standing

> and holding their arms over their heads)

>

> Perhaps you could email your xrays to an expert in IS? That is

what we did

> with Dr. Khoury (via ) and he got back to us that same day

even though

> Holly wasn't his patient at that point.

>

> Also, keep in mind that a lot of babies do not like tummy time at

first.

>

> In what position does your son sleep?

>

> By the way, I asked Dr. Khoury specifically about the swing

sleeping and he

> said that it has been suggested that a genetic predisposition

combined with

> certain prolonged sleeping positions (swing, carseat, swaddling and

then

> sleeping on only one side of the ribs) could " cause " IS. (he

didn't use the

> word " cause " , I just can't remember exactly how he put it). He

said that

> " lack of mobility " is not good for the developing spine.

>

> Good luck

>

> _____

>

> From: infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

> [mailto:infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

] On Behalf Of

lmariewilson

> Sent: Thursday, February 07, 2008 10:34 AM

> To: infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

> Subject: Looking for more

information/experiences

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

February 9, 2008

This just rubs me the wrong way - so don't take this personally, but if she

has never seen a case, how on earth can she say what would or would not be

good for him?

time is of the essence here - waiting and watching is what has children too

far progressed to have effective treatment. An MRI is virtually no

intervention. It's just a really in depth x-ray. A *truthful* scientific

diagnosis, based on the results of an MRI, is what your child NEEDS right

now - not speculation. No one can see his spinal cord, no one can see his

vertebrae - so how can they know that it is idiopathic? They can't. They

HAVE to do an MRI to know that. If there is a tumor or a tethered cord

causing the scoliosis, that is just your first warning sign - his first

symptom. Doing nothing is not going to help anyone. It has nothing to do

with quelling fears - it's just bad information.

February 9, 2008

I agree that there is no " down side " to going back in 1 or 2 months

as opposed to 4 months.

Best of luck to you!

> > > > > >

> > > > > > My son was 10 months when he was diagnosed, which is very

> > late.

> > > > > > Do not wait and see. Has your son had an MRI yet? He

needs

> > that

> > > > > first,

> > > > > > then he needs to be seen by a surgeon who has been

properly

> > > > trained

> > > > > and has

> > > > > > the pediatric AMIL frame to not only apply a cast, but to

> be

> > > able

> > > > to

> > > > > > manipulate the spine so that it de-rotates. I cannot

stress

> > how

> > > > > important

> > > > > > it is to have someone who has been properly trained. This

> is

> > a

> > > > rare

> > > > > > condition and not many doctors are familiar with it.

Please

> > let

> > > > me

> > > > > know

> > > > > > where you are located and we'll help you get in touch

with

> > the

> > > > > closest

> > > > > > doctor that can more effectively treat your son. Time is

of

> > the

> > > > > essence -

> > > > > > appointments can take some time, the MRI takes some time,

> so

> > > it's

> > > > > essential

> > > > > > that you get through that as quickly as possible so that

he

> > can

> > > be

> > > > > > monitored.

> > > > > > Sandi

> > > > > >

February 9, 2008

Really confused as to why she thinks the MRI would do him more harm, but I guess

that is your call.

I just wanted to say I would NOT " wait and see " too long. I would be working

like heck to get a 2nd opinion.

When we were first told about my son's scoliosis. he had a 29 degree curve.

RVAD was not even told at that visit. We were told to " wait and see " and went

back 4 months later. It had progresses to 34 and the RVAD was measured at this

visit at 40.

DO NOT " WAIT AND SEE " !

I know this all has to be really hard......especially given your son's age.

was diagnosed at 9 months and after everything( " wait and see " , scheduling a

MRI and him getting sick in between)was said and done he was 15 months after he

actually started the whole casting treatment. God has blessed you with finding

out early with your son.

I am thinking about you this evening and the decisions you face.

Take care and keep us posted. I am also saying prayer for you guys.

Tasha

Mommy of twin boys- and 34 months

Fort Worth, Texas

lmariewilson wrote: We

are seeking a second and third opinion. In the meantime, we spoke

with our doctor and found out some more information. The Cobb angle

is 19.7 and the RVAD is 17.8. The curve is thoracolumbar and its to

the left. She advised against getting an MRI at this point because

she felt it would do more harm to our son and at this point, the only

treatment is to wait and see. I would not want to put him through an

MRI just to quell our fears. I have to put my faith in our doctor,

seek second and third opinions and hope and pray that he fits within

the majority that resolve on their own.

>

> I am pretty new to all of this, but from what I have read there are

a number

> of prognostic indicators that help to predict the course of IS. A

low RVAD

> score (< 25*) is one of the best predictors so that would be good

> information to have. Other predictors of a good outcome are male

gender,

> curve to the left, under 1 year of age at diagnosis, a curve less

than 30

> degrees, lack of an obvious hump, and low rotation. I also read

that curves

> over 20 degrees warrant an MRI to rule out neurological problems.

IS has an

> 85% natural remission rate, so that is why it is important to look

at other

> information that could help with the prediction of resolving versus

> progressive.

>

> Perhaps your doctor is going by the facts that your son is very

young with a

> relatively small curve at this point. The first doctor we saw also

told us

> to wait 4 months for a follow-up xray, but when we saw Dr. Khoury

yesterday

> he suggested waiting only 6 weeks for a follow-up xray. I

personally would

> have a hard time waiting for 4 months since so much can happen in

that time!

>

> I am curious how you discovered the curve in your 4.5 month old

son? Was

> the xray taken while he has " standing " or lying down (they should

be taken

> lying down, but xrays in little ones are often taken the wrong way

(standing

> and holding their arms over their heads)

>

> Perhaps you could email your xrays to an expert in IS? That is

what we did

> with Dr. Khoury (via ) and he got back to us that same day

even though

> Holly wasn't his patient at that point.

>

> Also, keep in mind that a lot of babies do not like tummy time at

first.

>

> In what position does your son sleep?

>

> By the way, I asked Dr. Khoury specifically about the swing

sleeping and he

> said that it has been suggested that a genetic predisposition

combined with

> certain prolonged sleeping positions (swing, carseat, swaddling and

then

> sleeping on only one side of the ribs) could " cause " IS. (he

didn't use the

> word " cause " , I just can't remember exactly how he put it). He

said that

> " lack of mobility " is not good for the developing spine.

>

> Good luck

>

> _____

>

> From: infantile_scoliosis

> [mailto:infantile_scoliosis ] On Behalf Of

lmariewilson

> Sent: Thursday, February 07, 2008 10:34 AM

> To: infantile_scoliosis

> Subject: Looking for more

information/experiences

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

February 9, 2008

Wow - I would be seeking a 2nd opinion on the decision to NOT do the MRI to

rule out congenital. As a previous poster stated, that is essential in ruling

out a tumor, tethered cord and so on of issues causing congenital or idiopathic.

Depending on what the case may be, that will impact the direction of treatment

you pursue. Reminds me of a patient I had once in my first job who did not want

her child to have a panoramic xray taken on her 6 year old. That is when we

routinely began doing panoramics on children. Well, her previous dentist had

frightened her to the point of no return on dental xrays and said a panorex was

unwarranted in a child. Well, during my exam I felt a nodule in his mandibular

bone and had my dentist finally talk her into the film....the child had a tumor

in his mandible the size of a pecan. She wouldn't have known until the symptoms

may have been at a detrimental point. The MRI isn't going to hurt your child and

is only going to help or rule out other issues. It is done in a manner where the

child is usually sedated and basically asleep. My husband and I were allowed to

stay in the room while the MRI was being performed and Lexi woke up as soon as

they were bringing her out of the machine. She hadn't a clue what had happened

or what went on.

It honestly sounds as if you are covering all your bases to make your

decision for your child and that is awesome. However, I would strongly suggest

discussing the pro's of having the MRI. I know in our case as well as others

here, renal ultrasounds were also performed shortly after our scoliosis

diagnosis as the kidneys and spine form around the same time in utero. Some

children as well have been found to have issues with the kidneys. I would much

rather quell my fears and know that anything that could be involved internally

was thoroughly looked at than find out later something was.

Best of luck

Tracey

Looking for more

information/experiences

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

February 9, 2008

In light of this recent discussion I uploaded a 2006 journal article in the

FILES section of the Yahoo Group that outlines the clinical management of

infantile scoliosis. It has a decision tree, which looks like it could be

helpful for a doctor (or parent) not very familiar with IS. First author is

Gillingham.

(mom to Holly 8 mo, IS 16* curve to the right)

_____

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of Tasha Fontenot

Sent: Friday, February 08, 2008 9:49 PM

To: infantile_scoliosis

Subject: Re: Re: Looking for more

information/experiences

Really confused as to why she thinks the MRI would do him more harm, but I

guess that is your call.

I just wanted to say I would NOT " wait and see " too long. I would be working

like heck to get a 2nd opinion.

When we were first told about my son's scoliosis. he had a 29 degree curve.

RVAD was not even told at that visit. We were told to " wait and see " and

went back 4 months later. It had progresses to 34 and the RVAD was measured

at this visit at 40.

DO NOT " WAIT AND SEE " !

I know this all has to be really hard......especially given your son's age.

was diagnosed at 9 months and after everything( " wait and see " ,

scheduling a MRI and him getting sick in between)was said and done he was 15

months after he actually started the whole casting treatment. God has

blessed you with finding out early with your son.

I am thinking about you this evening and the decisions you face.

Take care and keep us posted. I am also saying prayer for you guys.

Tasha

Mommy of twin boys- and 34 months

Fort Worth, Texas

lmariewilson <lmariewilson@ <mailto:lmariewilson%40yahoo.com> yahoo.com>

wrote: We are seeking a second and third opinion. In the meantime, we spoke

with our doctor and found out some more information. The Cobb angle

is 19.7 and the RVAD is 17.8. The curve is thoracolumbar and its to

the left. She advised against getting an MRI at this point because

she felt it would do more harm to our son and at this point, the only

treatment is to wait and see. I would not want to put him through an

MRI just to quell our fears. I have to put my faith in our doctor,

seek second and third opinions and hope and pray that he fits within

the majority that resolve on their own.

>

> I am pretty new to all of this, but from what I have read there are

a number

> of prognostic indicators that help to predict the course of IS. A

low RVAD

> score (< 25*) is one of the best predictors so that would be good

> information to have. Other predictors of a good outcome are male

gender,

> curve to the left, under 1 year of age at diagnosis, a curve less

than 30

> degrees, lack of an obvious hump, and low rotation. I also read

that curves

> over 20 degrees warrant an MRI to rule out neurological problems.

IS has an

> 85% natural remission rate, so that is why it is important to look

at other

> information that could help with the prediction of resolving versus

> progressive.

>

> Perhaps your doctor is going by the facts that your son is very

young with a

> relatively small curve at this point. The first doctor we saw also

told us

> to wait 4 months for a follow-up xray, but when we saw Dr. Khoury

yesterday

> he suggested waiting only 6 weeks for a follow-up xray. I

personally would

> have a hard time waiting for 4 months since so much can happen in

that time!

>

> I am curious how you discovered the curve in your 4.5 month old

son? Was

> the xray taken while he has " standing " or lying down (they should

be taken

> lying down, but xrays in little ones are often taken the wrong way

(standing

> and holding their arms over their heads)

>

> Perhaps you could email your xrays to an expert in IS? That is

what we did

> with Dr. Khoury (via ) and he got back to us that same day

even though

> Holly wasn't his patient at that point.

>

> Also, keep in mind that a lot of babies do not like tummy time at

first.

>

> In what position does your son sleep?

>

> By the way, I asked Dr. Khoury specifically about the swing

sleeping and he

> said that it has been suggested that a genetic predisposition

combined with

> certain prolonged sleeping positions (swing, carseat, swaddling and

then

> sleeping on only one side of the ribs) could " cause " IS. (he

didn't use the

> word " cause " , I just can't remember exactly how he put it). He

said that

> " lack of mobility " is not good for the developing spine.

>

> Good luck

>

> _____

>

> From: infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

> [mailto:infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

] On Behalf Of

lmariewilson

> Sent: Thursday, February 07, 2008 10:34 AM

> To: infantile_scoliosis <mailto:infantile_scoliosis%40yahoogroups.com>

> Subject: Looking for more

information/experiences

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

February 9, 2008

She said it was not necessary. He would have to go under and it would

only serve to make us feel better. Those are her words, not mine.

We are seeing a second opinion in about 2 weeks at the children's

hospital in new york. We may also seek a third opinion in the

interim.

> >

> > I am pretty new to all of this, but from what I have read there

are

> a number

> > of prognostic indicators that help to predict the course of IS.

A

> low RVAD

> > score (< 25*) is one of the best predictors so that would be

good

> > information to have. Other predictors of a good outcome are

male

> gender,

> > curve to the left, under 1 year of age at diagnosis, a curve

less

> than 30

> > degrees, lack of an obvious hump, and low rotation. I also read

> that curves

> > over 20 degrees warrant an MRI to rule out neurological

problems.

> IS has an

> > 85% natural remission rate, so that is why it is important to

look

> at other

> > information that could help with the prediction of resolving

versus

> > progressive.

> >

> > Perhaps your doctor is going by the facts that your son is very

> young with a

> > relatively small curve at this point. The first doctor we saw

also

> told us

> > to wait 4 months for a follow-up xray, but when we saw Dr.

Khoury

> yesterday

> > he suggested waiting only 6 weeks for a follow-up xray. I

> personally would

> > have a hard time waiting for 4 months since so much can happen

in

> that time!

> >

> > I am curious how you discovered the curve in your 4.5 month old

> son? Was

> > the xray taken while he has " standing " or lying down (they

should

> be taken

> > lying down, but xrays in little ones are often taken the wrong

way

> (standing

> > and holding their arms over their heads)

> >

> > Perhaps you could email your xrays to an expert in IS? That is

> what we did

> > with Dr. Khoury (via ) and he got back to us that same

day

> even though

> > Holly wasn't his patient at that point.

> >

> > Also, keep in mind that a lot of babies do not like tummy time

at

> first.

> >

> > In what position does your son sleep?

> >

> > By the way, I asked Dr. Khoury specifically about the swing

> sleeping and he

> > said that it has been suggested that a genetic predisposition

> combined with

> > certain prolonged sleeping positions (swing, carseat, swaddling

and

> then

> > sleeping on only one side of the ribs) could " cause " IS. (he

> didn't use the

> > word " cause " , I just can't remember exactly how he put it). He

> said that

> > " lack of mobility " is not good for the developing spine.

> >

> > Good luck

> >

> > _____

> >

> > From: infantile_scoliosis

> > [mailto:infantile_scoliosis ] On Behalf Of

> lmariewilson

> > Sent: Thursday, February 07, 2008 10:34 AM

> > To: infantile_scoliosis

> > Subject: Looking for more

> information/experiences

> >

> > Our son is 4.5 months and was just diagnosed with idiopathic

> infantile

> > scoliosis. His curve is on the left side and right now its at

20

> > degrees. The doctor said we just have to wait and see how it

> > progresses. From what I have read thus far, he is on the cusp

as to

> > whether it will resolve on its own or get progressively worse.

> >

> > Our follow-up appointment is in 4 months. In the meantime, I am

> looking

> > for more information/experiences - is 4 months a long time to

wait

> > (considering he's only about 4 months now), how old was your

child

> when

> > they were diagnosed, what was the degree, prognosis, treatment,

> etc.??

> > Did anything else develop as a result of the scoliosis? He does

not

> > like being on his tummy - he screams every single time - and I

am

> > wondering if there is any connection?

> >

> > Any information would be greatly appreciated.

> >

> > LWO

> >

February 9, 2008

Thank you for posting the article. Based on our son's numbers, our

doctor is in line with treatment. His RVAD is under 20 and his Cobb

is under 25. We would also like to find out whether it is Phase I or

II. We will either ask our doctor, or check with one of the ones we

see next. Thanks again. This was helpful.

While I understand that many of you suggest that an MRI is necessary.

I am going to see what our next set of doctors suggest before

insisting on having it.

> >

> > I am pretty new to all of this, but from what I have read there

are

> a number

> > of prognostic indicators that help to predict the course of IS. A

> low RVAD

> > score (< 25*) is one of the best predictors so that would be good

> > information to have. Other predictors of a good outcome are male

> gender,

> > curve to the left, under 1 year of age at diagnosis, a curve less

> than 30

> > degrees, lack of an obvious hump, and low rotation. I also read

> that curves

> > over 20 degrees warrant an MRI to rule out neurological problems.

> IS has an

> > 85% natural remission rate, so that is why it is important to

look

> at other

> > information that could help with the prediction of resolving

versus

> > progressive.

> >

> > Perhaps your doctor is going by the facts that your son is very

> young with a

> > relatively small curve at this point. The first doctor we saw

also

> told us

> > to wait 4 months for a follow-up xray, but when we saw Dr. Khoury

> yesterday

> > he suggested waiting only 6 weeks for a follow-up xray. I

> personally would

> > have a hard time waiting for 4 months since so much can happen in

> that time!

> >

> > I am curious how you discovered the curve in your 4.5 month old

> son? Was

> > the xray taken while he has " standing " or lying down (they should

> be taken

> > lying down, but xrays in little ones are often taken the wrong

way

> (standing

> > and holding their arms over their heads)

> >

> > Perhaps you could email your xrays to an expert in IS? That is

> what we did

> > with Dr. Khoury (via ) and he got back to us that same day

> even though

> > Holly wasn't his patient at that point.

> >

> > Also, keep in mind that a lot of babies do not like tummy time at

> first.

> >

> > In what position does your son sleep?

> >

> > By the way, I asked Dr. Khoury specifically about the swing

> sleeping and he

> > said that it has been suggested that a genetic predisposition

> combined with

> > certain prolonged sleeping positions (swing, carseat, swaddling

and

> then

> > sleeping on only one side of the ribs) could " cause " IS. (he

> didn't use the

> > word " cause " , I just can't remember exactly how he put it). He

> said that

> > " lack of mobility " is not good for the developing spine.

> >

> > Good luck

> >

> > _____

> >

> > From: infantile_scoliosis <mailto:infantile_scoliosis%

40yahoogroups.com>

>

> > [mailto:infantile_scoliosis <mailto:infantile_scoliosis%

40yahoogroups.com>

> ] On Behalf Of

> lmariewilson

> > Sent: Thursday, February 07, 2008 10:34 AM

> > To: infantile_scoliosis <mailto:infantile_scoliosis%

40yahoogroups.com>

>

> > Subject: Looking for more

> information/experiences

> >

> > Our son is 4.5 months and was just diagnosed with idiopathic

> infantile

> > scoliosis. His curve is on the left side and right now its at 20

> > degrees. The doctor said we just have to wait and see how it

> > progresses. From what I have read thus far, he is on the cusp as

to

> > whether it will resolve on its own or get progressively worse.

> >

> > Our follow-up appointment is in 4 months. In the meantime, I am

> looking

> > for more information/experiences - is 4 months a long time to

wait

> > (considering he's only about 4 months now), how old was your

child

> when

> > they were diagnosed, what was the degree, prognosis, treatment,

> etc.??

> > Did anything else develop as a result of the scoliosis? He does

not

> > like being on his tummy - he screams every single time - and I am

> > wondering if there is any connection?

> >

> > Any information would be greatly appreciated.

> >

> > LWO

> >

February 9, 2008

Good luck in your road to treatment, whatever that may be be. I would strongly

suggest that you make sure your second, or third, opinion is with a Mehta

trained doctor with the correct equipment and experience. There is a list

available on this group (I think in files section).

Looking for more

> information/experiences

> >

> > Our son is 4.5 months and was just diagnosed with idiopathic

> infantile

> > scoliosis. His curve is on the left side and right now its at

20

> > degrees. The doctor said we just have to wait and see how it

> > progresses. From what I have read thus far, he is on the cusp

as to

> > whether it will resolve on its own or get progressively worse.

> >

> > Our follow-up appointment is in 4 months. In the meantime, I am

> looking

> > for more information/experiences - is 4 months a long time to

wait

> > (considering he's only about 4 months now), how old was your

child

> when

> > they were diagnosed, what was the degree, prognosis, treatment,

> etc.??

> > Did anything else develop as a result of the scoliosis? He does

not

> > like being on his tummy - he screams every single time - and I

am

> > wondering if there is any connection?

> >

> > Any information would be greatly appreciated.

> >

> > LWO

> >

February 9, 2008

I cant seem to find the list in the files section - is there any

other place I should look?

> > >

> > > I am pretty new to all of this, but from what I have read

there

> are

> > a number

> > > of prognostic indicators that help to predict the course of

IS.

> A

> > low RVAD

> > > score (< 25*) is one of the best predictors so that would be

> good

> > > information to have. Other predictors of a good outcome are

> male

> > gender,

> > > curve to the left, under 1 year of age at diagnosis, a curve

> less

> > than 30

> > > degrees, lack of an obvious hump, and low rotation. I also

read

> > that curves

> > > over 20 degrees warrant an MRI to rule out neurological

> problems.

> > IS has an

> > > 85% natural remission rate, so that is why it is important to

> look

> > at other

> > > information that could help with the prediction of resolving

> versus

> > > progressive.

> > >

> > > Perhaps your doctor is going by the facts that your son is

very

> > young with a

> > > relatively small curve at this point. The first doctor we saw

> also

> > told us

> > > to wait 4 months for a follow-up xray, but when we saw Dr.

> Khoury

> > yesterday

> > > he suggested waiting only 6 weeks for a follow-up xray. I

> > personally would

> > > have a hard time waiting for 4 months since so much can

happen

> in

> > that time!

> > >

> > > I am curious how you discovered the curve in your 4.5 month

old

> > son? Was

> > > the xray taken while he has " standing " or lying down (they

> should

> > be taken

> > > lying down, but xrays in little ones are often taken the

wrong

> way

> > (standing

> > > and holding their arms over their heads)

> > >

> > > Perhaps you could email your xrays to an expert in IS? That

is

> > what we did

> > > with Dr. Khoury (via ) and he got back to us that same

> day

> > even though

> > > Holly wasn't his patient at that point.

> > >

> > > Also, keep in mind that a lot of babies do not like tummy

time

> at

> > first.

> > >

> > > In what position does your son sleep?

> > >

> > > By the way, I asked Dr. Khoury specifically about the swing

> > sleeping and he

> > > said that it has been suggested that a genetic predisposition

> > combined with

> > > certain prolonged sleeping positions (swing, carseat,

swaddling

> and

> > then

> > > sleeping on only one side of the ribs) could " cause " IS. (he

> > didn't use the

> > > word " cause " , I just can't remember exactly how he put it).

He

> > said that

> > > " lack of mobility " is not good for the developing spine.

> > >

> > > Good luck

> > >

> > > _____

> > >

> > > From: infantile_scoliosis

> > > [mailto:infantile_scoliosis ] On Behalf Of

> > lmariewilson

> > > Sent: Thursday, February 07, 2008 10:34 AM

> > > To: infantile_scoliosis

> > > Subject: Looking for more

> > information/experiences

> > >

> > > Our son is 4.5 months and was just diagnosed with idiopathic

> > infantile

> > > scoliosis. His curve is on the left side and right now its at

> 20

> > > degrees. The doctor said we just have to wait and see how it

> > > progresses. From what I have read thus far, he is on the cusp

> as to

> > > whether it will resolve on its own or get progressively

worse.

> > >

> > > Our follow-up appointment is in 4 months. In the meantime, I

am

> > looking

> > > for more information/experiences - is 4 months a long time to

> wait

> > > (considering he's only about 4 months now), how old was your

> child

> > when

> > > they were diagnosed, what was the degree, prognosis,

treatment,

> > etc.??

> > > Did anything else develop as a result of the scoliosis? He

does

> not

> > > like being on his tummy - he screams every single time - and

I

> am

> > > wondering if there is any connection?

> > >

> > > Any information would be greatly appreciated.

> > >

> > > LWO

> > >

February 9, 2008

I happened to see the list of " Mehta-trained doctors " in the Database

section.

> > > >

> > > > I am pretty new to all of this, but from what I have read

> there

> > are

> > > a number

> > > > of prognostic indicators that help to predict the course of

> IS.

> > A

> > > low RVAD

> > > > score (< 25*) is one of the best predictors so that would

be

> > good

> > > > information to have. Other predictors of a good outcome are

> > male

> > > gender,

> > > > curve to the left, under 1 year of age at diagnosis, a

curve

> > less

> > > than 30

> > > > degrees, lack of an obvious hump, and low rotation. I also

> read

> > > that curves

> > > > over 20 degrees warrant an MRI to rule out neurological

> > problems.

> > > IS has an

> > > > 85% natural remission rate, so that is why it is important

to

> > look

> > > at other

> > > > information that could help with the prediction of

resolving

> > versus

> > > > progressive.

> > > >

> > > > Perhaps your doctor is going by the facts that your son is

> very

> > > young with a

> > > > relatively small curve at this point. The first doctor we

saw

> > also

> > > told us

> > > > to wait 4 months for a follow-up xray, but when we saw Dr.

> > Khoury

> > > yesterday

> > > > he suggested waiting only 6 weeks for a follow-up xray. I

> > > personally would

> > > > have a hard time waiting for 4 months since so much can

> happen

> > in

> > > that time!

> > > >

> > > > I am curious how you discovered the curve in your 4.5 month

> old

> > > son? Was

> > > > the xray taken while he has " standing " or lying down (they

> > should

> > > be taken

> > > > lying down, but xrays in little ones are often taken the

> wrong

> > way

> > > (standing

> > > > and holding their arms over their heads)

> > > >

> > > > Perhaps you could email your xrays to an expert in IS? That

> is

> > > what we did

> > > > with Dr. Khoury (via ) and he got back to us that

same

> > day

> > > even though

> > > > Holly wasn't his patient at that point.

> > > >

> > > > Also, keep in mind that a lot of babies do not like tummy

> time

> > at

> > > first.

> > > >

> > > > In what position does your son sleep?

> > > >

> > > > By the way, I asked Dr. Khoury specifically about the swing

> > > sleeping and he

> > > > said that it has been suggested that a genetic

predisposition

> > > combined with

> > > > certain prolonged sleeping positions (swing, carseat,

> swaddling

> > and

> > > then

> > > > sleeping on only one side of the ribs) could " cause " IS.

(he

> > > didn't use the

> > > > word " cause " , I just can't remember exactly how he put it).

> He

> > > said that

> > > > " lack of mobility " is not good for the developing spine.

> > > >

> > > > Good luck

> > > >

> > > > _____

> > > >

> > > > From: infantile_scoliosis

> > > > [mailto:infantile_scoliosis ] On Behalf Of

> > > lmariewilson

> > > > Sent: Thursday, February 07, 2008 10:34 AM

> > > > To: infantile_scoliosis

> > > > Subject: Looking for more

> > > information/experiences

> > > >

> > > > Our son is 4.5 months and was just diagnosed with

idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its

at

> > 20

> > > > degrees. The doctor said we just have to wait and see how

it

> > > > progresses. From what I have read thus far, he is on the

cusp

> > as to

> > > > whether it will resolve on its own or get progressively

> worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime,

I

> am

> > > looking

> > > > for more information/experiences - is 4 months a long time

to

> > wait

> > > > (considering he's only about 4 months now), how old was

your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

> treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

> does

> > not

> > > > like being on his tummy - he screams every single time -

and

> I

> > am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

February 9, 2008

Those are just a few........that is not all of them.

There was a post just recently with of all them..........let me see if I can

find.

Tasha

wrote: I happened to

see the list of " Mehta-trained doctors " in the Database

section.

> > > >

> > > > I am pretty new to all of this, but from what I have read

> there

> > are

> > > a number

> > > > of prognostic indicators that help to predict the course of

> IS.

> > A

> > > low RVAD

> > > > score (< 25*) is one of the best predictors so that would

be

> > good

> > > > information to have. Other predictors of a good outcome are

> > male

> > > gender,

> > > > curve to the left, under 1 year of age at diagnosis, a

curve

> > less

> > > than 30

> > > > degrees, lack of an obvious hump, and low rotation. I also

> read

> > > that curves

> > > > over 20 degrees warrant an MRI to rule out neurological

> > problems.

> > > IS has an

> > > > 85% natural remission rate, so that is why it is important

to

> > look

> > > at other

> > > > information that could help with the prediction of

resolving

> > versus

> > > > progressive.

> > > >

> > > > Perhaps your doctor is going by the facts that your son is

> very

> > > young with a

> > > > relatively small curve at this point. The first doctor we

saw

> > also

> > > told us

> > > > to wait 4 months for a follow-up xray, but when we saw Dr.

> > Khoury

> > > yesterday

> > > > he suggested waiting only 6 weeks for a follow-up xray. I

> > > personally would

> > > > have a hard time waiting for 4 months since so much can

> happen

> > in

> > > that time!

> > > >

> > > > I am curious how you discovered the curve in your 4.5 month

> old

> > > son? Was

> > > > the xray taken while he has " standing " or lying down (they

> > should

> > > be taken

> > > > lying down, but xrays in little ones are often taken the

> wrong

> > way

> > > (standing

> > > > and holding their arms over their heads)

> > > >

> > > > Perhaps you could email your xrays to an expert in IS? That

> is

> > > what we did

> > > > with Dr. Khoury (via ) and he got back to us that

same

> > day

> > > even though

> > > > Holly wasn't his patient at that point.

> > > >

> > > > Also, keep in mind that a lot of babies do not like tummy

> time

> > at

> > > first.

> > > >

> > > > In what position does your son sleep?

> > > >

> > > > By the way, I asked Dr. Khoury specifically about the swing

> > > sleeping and he

> > > > said that it has been suggested that a genetic

predisposition

> > > combined with

> > > > certain prolonged sleeping positions (swing, carseat,

> swaddling

> > and

> > > then

> > > > sleeping on only one side of the ribs) could " cause " IS.

(he

> > > didn't use the

> > > > word " cause " , I just can't remember exactly how he put it).

> He

> > > said that

> > > > " lack of mobility " is not good for the developing spine.

> > > >

> > > > Good luck

> > > >

> > > > _____

> > > >

> > > > From: infantile_scoliosis

> > > > [mailto:infantile_scoliosis ] On Behalf Of

> > > lmariewilson

> > > > Sent: Thursday, February 07, 2008 10:34 AM

> > > > To: infantile_scoliosis

> > > > Subject: Looking for more

> > > information/experiences

> > > >

> > > > Our son is 4.5 months and was just diagnosed with

idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its

at

> > 20

> > > > degrees. The doctor said we just have to wait and see how

it

> > > > progresses. From what I have read thus far, he is on the

cusp

> > as to

> > > > whether it will resolve on its own or get progressively

> worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime,

I

> am

> > > looking

> > > > for more information/experiences - is 4 months a long time

to

> > wait

> > > > (considering he's only about 4 months now), how old was

your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

> treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

> does

> > not

> > > > like being on his tummy - he screams every single time -

and

> I

> > am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

February 14, 2008

Dr. Rubary is also in Rochester

Shellie

Claflin wrote:

Ditto what said. You want to find someone who specializes in infantile

scoliosis and they are hard to find. I would contact Dr. in Rochester

if I was you.

Yes, the first step would be to find out if he is idiopathic versus congenital,

so you will want to have the MRI done. They also need to rule out a tethered

spinal cord.

Noelle (12-2-01)

Ian (8-15-04)

Re: Looking for more information/experiences

He has not had an MRI. Why would he need an MRI?

We are in New York City and were seen at the Hospital for Special

Surgery at Cornell. I thought they were one of the best?? Do you know

of any doctors in NYC?

>

> My son was 10 months when he was diagnosed, which is very late.

> Do not wait and see. Has your son had an MRI yet? He needs that

first,

> then he needs to be seen by a surgeon who has been properly trained

and has

> the pediatric AMIL frame to not only apply a cast, but to be able to

> manipulate the spine so that it de-rotates. I cannot stress how

important

> it is to have someone who has been properly trained. This is a rare

> condition and not many doctors are familiar with it. Please let me

know

> where you are located and we'll help you get in touch with the

closest

> doctor that can more effectively treat your son. Time is of the

essence -

> appointments can take some time, the MRI takes some time, so it's

essential

> that you get through that as quickly as possible so that he can be

> monitored.

> Sandi

>

February 25, 2008

Hello,

Not including your own responses I think 42 families have told you

what course of action is necessary.

First, obviously one of the doctors is doing a measurement with a

very different method than the other. Stop wasting your time. There

is one cure- casting. Find out if you need it and get it done if you

do.

If the scoliosis is not progressive,but rather resolving, then

according to doctor Mehta, nothing needs to be done except

observation to kake sure it is resolving.

I have done my part. My conscience is clear. You can only lead a

horse to water....

If you need any info, email me.

Thanks,

-- In infantile_scoliosis , " lmariewilson "

wrote:

>

> We had two doctors read the same xray. Our orthapedist read it as

> 19.7 Cobb, 17.8 RVAD. The specialist read it as 23 Cobb, 7 RVAD.

We

> are seeing someone at Columbia tomorrow - so I will be interested

in

> knowing where he places it. From there, we will decide what to do.

I

> know that 3 months is a long time. When are we supposed to get the

> next xray? I presume I can just ask them to do it earlier (though

our

> orthapedist said she wouldnt do it - when we asked for a follow-up

> sooner than 4 months, she told us to seek a second opinion).

Either

> way, I presume we have to space it out at least a little bit before

> they can tell where the curve is going, right?

>

> > > >

> > > > Our son is 4.5 months and was just diagnosed with idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its at

> 20

> > > > degrees. The doctor said we just have to wait and see how it

> > > > progresses. From what I have read thus far, he is on the cusp

> as

> > to

> > > > whether it will resolve on its own or get progressively

worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime, I

am

> > > looking

> > > > for more information/experiences - is 4 months a long time to

> > wait

> > > > (considering he's only about 4 months now), how old was your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

does

> > not

> > > > like being on his tummy - he screams every single time - and

I

> am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

> > >

> >

>

February 25, 2008

You might want to consider emailing your xrays to Dr. Khoury (via his nurse

). This is what I did and he got back to me within one day. If

casting is warranted, he would be a great option if you have good insurance.

(mom to Holly 8.5 mo, 16* curve to the right, resolving???)

_____

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of lmariewilson

Sent: Sunday, February 24, 2008 10:05 PM

To: infantile_scoliosis

Subject: Re: Looking for more information/experiences

We had two doctors read the same xray. Our orthapedist read it as

19.7 Cobb, 17.8 RVAD. The specialist read it as 23 Cobb, 7 RVAD. We

are seeing someone at Columbia tomorrow - so I will be interested in

knowing where he places it. From there, we will decide what to do. I

know that 3 months is a long time. When are we supposed to get the

next xray? I presume I can just ask them to do it earlier (though our

orthapedist said she wouldnt do it - when we asked for a follow-up

sooner than 4 months, she told us to seek a second opinion). Either

way, I presume we have to space it out at least a little bit before

they can tell where the curve is going, right?

> > >

> > > Our son is 4.5 months and was just diagnosed with idiopathic

> > infantile

> > > scoliosis. His curve is on the left side and right now its at

20

> > > degrees. The doctor said we just have to wait and see how it

> > > progresses. From what I have read thus far, he is on the cusp

as

> to

> > > whether it will resolve on its own or get progressively worse.

> > >

> > > Our follow-up appointment is in 4 months. In the meantime, I am

> > looking

> > > for more information/experiences - is 4 months a long time to

> wait

> > > (considering he's only about 4 months now), how old was your

> child

> > when

> > > they were diagnosed, what was the degree, prognosis, treatment,

> > etc.??

> > > Did anything else develop as a result of the scoliosis? He does

> not

> > > like being on his tummy - he screams every single time - and I

am

> > > wondering if there is any connection?

> > >

> > > Any information would be greatly appreciated.

> > >

> > > LWO

> > >

> >

>

February 25, 2008

Did you email your first set of xrays - or were there 2 sets, so he

could do a comparison? (Just trying to figure out if I spend the $50

to put the first set on a CD or wait until I get the second set).

> > > >

> > > > Our son is 4.5 months and was just diagnosed with idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its at

> 20

> > > > degrees. The doctor said we just have to wait and see how it

> > > > progresses. From what I have read thus far, he is on the cusp

> as

> > to

> > > > whether it will resolve on its own or get progressively

worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime, I

am

> > > looking

> > > > for more information/experiences - is 4 months a long time to

> > wait

> > > > (considering he's only about 4 months now), how old was your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

does

> > not

> > > > like being on his tummy - he screams every single time - and

I

> am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

> > >

> >

>

February 25, 2008

I just emailed the first set that were taken when she was 7 months old. Dr.

Khoury took another set when she was 8 months old. However, I am pretty

sure he can discern some information about the progressive nature of the

curve from one set (i.e., the RVAD, rotation, extent of curve, location of

curve). There was no charge for getting our xrays on CD from either

facility. I just opened up the pictures on my computer and then used the

export function to save the images as JPEG files. It was a little tricky,

but after trying a few times the images saved to JPEG's. I have never heard

of a facility charging money to get a copy of the xrays or MRI. But I

personally would spend the 50 dollars rather than seeing a bunch of

different specialists who are not trained in early treatment.

(mom to Holly 8.5 mo, 16* curve to the right, resolving???)

_____

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of lmariewilson

Sent: Monday, February 25, 2008 11:04 AM

To: infantile_scoliosis

Subject: Re: Looking for more information/experiences

Did you email your first set of xrays - or were there 2 sets, so he

could do a comparison? (Just trying to figure out if I spend the $50

to put the first set on a CD or wait until I get the second set).

> > > >

> > > > Our son is 4.5 months and was just diagnosed with idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its at

> 20

> > > > degrees. The doctor said we just have to wait and see how it

> > > > progresses. From what I have read thus far, he is on the cusp

> as

> > to

> > > > whether it will resolve on its own or get progressively

worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime, I

am

> > > looking

> > > > for more information/experiences - is 4 months a long time to

> > wait

> > > > (considering he's only about 4 months now), how old was your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

does

> > not

> > > > like being on his tummy - he screams every single time - and

I

> am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

> > >

> >

>

February 25, 2008

-

We always had an RVAD difference between doctors. The Dr Emans said

25-30 then both Shriners in SLC and Erie always had one less than 20

degrees SLC said 7 and Erie said 8 so ? It depends which ribs they

use Dr Emans said he always used the " worst ribs " I am not sure what

to tell you

about our expirence. Adan was diagnosed 10 m 30 deg rt thorasic then

put in a Kailubus brace for 1 month..we went to Erie for a 2nd

opinion and Dr

took the brace off and took an xray 15 min later compared it to his

1st xray and said he was resolving...I wish I knew more then I would

have demanded a cast instead of waiting...we went to SLC then and

between colds and sleep apnea issues he did not get a cast till 23

months dont get me worng he is in a great place now 4.5 years 10 deg

standing out of brace after 2 yr casting,,,,,, also in TSLO at 4

degrees ...let me know

if you would like any more info...

We were very lucky to have found and ISOP or Adan would have

rods now.....

Adan's mom

10/14 deg out of brace standing xray

4 /10 in TLSO

-- In infantile_scoliosis , " no "

wrote:

>

> You might want to consider emailing your xrays to Dr. Khoury (via

his nurse

> ). This is what I did and he got back to me within one day.

If

> casting is warranted, he would be a great option if you have good

insurance.

>

> (mom to Holly 8.5 mo, 16* curve to the right, resolving???)

>

> _____

>

> From: infantile_scoliosis

> [mailto:infantile_scoliosis ] On Behalf Of

lmariewilson

> Sent: Sunday, February 24, 2008 10:05 PM

> To: infantile_scoliosis

> Subject: Re: Looking for more

information/experiences

>

> We had two doctors read the same xray. Our orthapedist read it as

> 19.7 Cobb, 17.8 RVAD. The specialist read it as 23 Cobb, 7 RVAD. We

> are seeing someone at Columbia tomorrow - so I will be interested

in

> knowing where he places it. From there, we will decide what to do.

I

> know that 3 months is a long time. When are we supposed to get the

> next xray? I presume I can just ask them to do it earlier (though

our

> orthapedist said she wouldnt do it - when we asked for a follow-up

> sooner than 4 months, she told us to seek a second opinion). Either

> way, I presume we have to space it out at least a little bit before

> they can tell where the curve is going, right?

>

> > > >

> > > > Our son is 4.5 months and was just diagnosed with idiopathic

> > > infantile

> > > > scoliosis. His curve is on the left side and right now its at

> 20

> > > > degrees. The doctor said we just have to wait and see how it

> > > > progresses. From what I have read thus far, he is on the cusp

> as

> > to

> > > > whether it will resolve on its own or get progressively

worse.

> > > >

> > > > Our follow-up appointment is in 4 months. In the meantime, I

am

> > > looking

> > > > for more information/experiences - is 4 months a long time to

> > wait

> > > > (considering he's only about 4 months now), how old was your

> > child

> > > when

> > > > they were diagnosed, what was the degree, prognosis,

treatment,

> > > etc.??

> > > > Did anything else develop as a result of the scoliosis? He

does

> > not

> > > > like being on his tummy - he screams every single time - and

I

> am

> > > > wondering if there is any connection?

> > > >

> > > > Any information would be greatly appreciated.

> > > >

> > > > LWO

> > > >

> > >

> >

>

February 25, 2008

We met with our second specialist today (at Columbia's Childrens

Hospital) and he measured 22 Cobb, 6 RVAD - much closer to the other

specialist and better than our orthopedist. Our orthopedist is not

familiar with the Mehta school of thought and we had to press her for

the RVAD number, so I think she was pretty off with her calcuation.

In any event, our doctor today was definitely more proactive than the

others. He also thinks its idiopathic and will resolve (though

obviously cant say for sure without further testing), but wants to

see him in 2 months for another xray (or, rather, 2 months from his

first set of xrays). From there, we will figure out if he needs an

EKG and MRI. He is familiar with the Mehta casting and thinks its a

good option if we need to go that route - but wouldnt recommend

casting yet anyway at this point(our son is 5 months). So I feel

better about things. After we get the second set of xrays, I will

email Dr. Khoury as well for his opinion. Thanks for the suggestions.

> > > > >

> > > > > Our son is 4.5 months and was just diagnosed with

idiopathic

> > > > infantile

> > > > > scoliosis. His curve is on the left side and right now its

at

> > 20

> > > > > degrees. The doctor said we just have to wait and see how

it

> > > > > progresses. From what I have read thus far, he is on the

cusp

> > as

> > > to

> > > > > whether it will resolve on its own or get progressively

> worse.

> > > > >

> > > > > Our follow-up appointment is in 4 months. In the meantime,

I

> am

> > > > looking

> > > > > for more information/experiences - is 4 months a long time

to

> > > wait

> > > > > (considering he's only about 4 months now), how old was

your

> > > child

> > > > when

> > > > > they were diagnosed, what was the degree, prognosis,

> treatment,

> > > > etc.??

> > > > > Did anything else develop as a result of the scoliosis? He

> does

> > > not

> > > > > like being on his tummy - he screams every single time -

and

> I

> > am

> > > > > wondering if there is any connection?

> > > > >

> > > > > Any information would be greatly appreciated.

> > > > >

> > > > > LWO

> > > > >

> > > >

> > >

> >

February 27, 2008

Hi!!! I see specialists for Noelle in NYC, too. We go to NYU's hospital for

joint disease for some of her care.... Where have you gone? Steph

lmariewilson wrote: Just wanted to give an

update. We saw a scoliosis specialist in New

York City this week and he had the same treatment suggestion - wait 3-

4 months and take another xray. He is not Mehta-trained, but he is

very familiar with the treatment and practice. He also said an MRI

was not necessary at this point as he saw no other indications that

something else was wrong. Interestingly, he measured our son's Cobb

angle at 23 and RVAD at 7 (our previous doctor measured his Cobb at

19.7 and RVAD at 17.8). Both doctors believe its Phase I. We are

seeing another specialist this week. I will be intested to see if he

says anything different. In the meantime, we are happy to hear that

this doctor, who specializes in scoliosis, felt that our son's case

was mild and that observation was the option for now.

>

> Our son is 4.5 months and was just diagnosed with idiopathic

infantile

> scoliosis. His curve is on the left side and right now its at 20

> degrees. The doctor said we just have to wait and see how it

> progresses. From what I have read thus far, he is on the cusp as to

> whether it will resolve on its own or get progressively worse.

>

> Our follow-up appointment is in 4 months. In the meantime, I am

looking

> for more information/experiences - is 4 months a long time to wait

> (considering he's only about 4 months now), how old was your child

when

> they were diagnosed, what was the degree, prognosis, treatment,

etc.??

> Did anything else develop as a result of the scoliosis? He does not

> like being on his tummy - he screams every single time - and I am

> wondering if there is any connection?

>

> Any information would be greatly appreciated.

>

> LWO

>

---------------------------------

Never miss a thing. Make Yahoo your homepage.

February 27, 2008

Hi again! There is a doctor at NYU's hospital for Joint Disease in NYC who does

not opt for surgery first. His name is Dr. Moskovich and I can give you his

info. if you want it. He is the Chief of Spinal Deformities. He does do serial

casting, though I will tell you that he does not have a pediatric casting table

and he isn't Mehta trained. He initially recommended serial casting for Noelle

and said surgery would be a last resort. His casts have the abdominal cutouts

and go under the shoulders, if appropriate, but don't have the cutout on the

side. His measurements are accurate and he can put you in touch with the right

doctors to assess all of your child's needs. He has directed me to a wonderful

neurologist and geneticist. He also suggested all the right tests to be done

for Noelle, including an MRI and sonograms of almost all of her internal organs.

I would not have him cast Noelle because he does not have as much experience as

other doctors with infantile

scoli and he doesn't have the proper equipment, but he is a good scoli doctor

and an excellent resource.... He is definately worthy to go to for a second

opinion and he is the only doc that I could find in NYC who does casting at all

in infants. I do urge you, though, if you decide to cast, to go with a mehta

trained doc who has the right table. Let me know and good luck in your search!

Steph

lmariewilson wrote: We had two doctors read

the same xray. Our orthapedist read it as