Re: Looking for more information/experiences

February 7, 2008

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 7, 2008

First where do you live? I would not wait and see. Go for a second

opinion. My son was 14months when diagnosed with a 24degree curve in

two and a half months it was at 37degrees. Just because it is only

20degrees now does not mean it will not progress rapidly.

Rochelle mom to Devyn

>

> 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 7, 2008

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 7, 2008

.. They do an MRI to rule out whether it is congenital or idiopathic. Idiopathic

means they do not know the cause and congenital means basically there is a

structural issue either ribs, vertebrae so on that is causing the curvature.

Tracey

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 7, 2008

They might be one of the best hospitals, just not for Progressive Infantile

Scoliosis. I would think the closest would be Rochester..Dr. .

How old is your son and his degree of curvature?

The reason for the MRI is to rule out any neurological abnormalities, to

determine if his scoli is congenital vs idiopathic.

HTH

and Evan

lmariewilson wrote:

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 7, 2008

Because they cannot diagnose infantile idiopathic scoliosis unless there is

an MRI. The MRI will show whether or not it is congenital - to check for

tumors, a tethered cord, or wedge or fused vertebrae. It is definitely step

two after the initial x-ray.

S

February 7, 2008

My son is 4.5 months old and he is at 19.7 degrees. The doctor said

it was idiopathic.

> >

> > 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 7, 2008

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 7, 2008

You can read my son, Evan's story on www.infantilescoliosis.org. He was

diagnosed when he was just 2.5 months old.

Evan hated to be on his tummy as well. He had torticollis too.

Good luck w/your decision...Have you ordered the DVD. A new direction from

ISOP? It might help explain early treatment somewhat.

HTH

and Evan

lmariewilson wrote:

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 7, 2008

He prob assmes it is idiopathic (no known cause), he cannot rule out any

abnormalities w/o the MRI. Most cases of infantile scoli are idiopathic, but not

all (obviously), it's just the norm. Congenital scoli cannot be treated by

early treatment, it can aide until surgery is necessary, but once an MRI rules

out any congenital abnormality, you can figure out your plan of care. If it

were congenital, it would be like Sandi said, surgery to deal w/ a tethered

cord, etc..

lmariewilson wrote:

My son is 4.5 months old and he is at 19.7 degrees. The doctor said

it was idiopathic.

> >

> > 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 7, 2008

I would get to Rochester and see Dr. ASAP. He's one of the

physicians who has been doing this the longest. He will know exactly what

to do and what to look for.

S

February 7, 2008

There are certain things such as a tethered spinal cord than can cause a spine

to curve that cannot be seen on a regular x-ray. If something like a tethered

spinal cord is left untreated, it can cause permanent damage. He really needs

an MRI to say for absolute certainty that he is idiopathic.

Noelle (12-2-01)

Ian (8-15-04)

Re: Looking for more information/experiences

My son is 4.5 months old and he is at 19.7 degrees. The doctor said

it was idiopathic.

> >

> > 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 7, 2008

As I said in my first post my son has Chiari malformation which was

found when they did the MRI. They originally did the MRI because they

thought he had a tethered spinal cord. The Chiari can be connected to

scoiliosis and he had to have brain surgery before they could cast to

make sure the casting would no affect the malformation. I would not

waste any time in getting it scheduled it usually takes a while to

get the MRI scheduled due to they have to be put under anesthesia.

Rochelle mom to Devyn

> >

> > 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 7, 2008

I have to agree that HSS is a great orthopedic hospital BUT they do

NOT specialize in infantile scoliosis. My son was diagnosed very

young and saw a doctor from HSS from before his second birthday until

her was five an a half (a total of almost 4 years). She was very

traditional and conventional, did NOT think outside the box - and

while the brace she had him in held his curve, that was all she could

offer.

(In case you're wondering, my son ended up having vertebral body

stapling at Shriners Hospital in Philadelphia when he was five and a

half and is doing very well).

My point is that I could tell right away when we went to Shriners

that they routinely saw younger kids, not just the typical scoliosis

patient but the more challenging cases. The team in Philly is great

and by the way, I learned recently that they do in fact have the

proper frame for casting. But no matter where you decide to go, I

would just be sure to find a doctor who routinely sees infants and

very young children.

Good luck!

> >

> > 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 7, 2008

Hello,

Did your doctor give you his RVAD measurement? That is the best

indication as to whether or not his curve will progress.

> > >

> > > 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 7, 2008

You have a lot of great advise.

My son was also 4 months when he was diagnosed with a 24 degree

curve. We were also told to wait and see and decided to seek a

second opinion. Yes, 20 degrees if a cusp as to whether it will

resolve on its own or not, but you have to weigh this out. We

decided to seek numerous other docs. Max also hated to be on his

tummy screaming liek mad. I know have a 5 week old son who does not

mind being on his belly for short periods (a big difference from

when Max was his age). Is it related to scoliosis, possibly?

My recommendation: seek a second opinion especially with a Mehta

trained doctor-where do you live?

Aekta

>

> 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 7, 2008

We are in New York City.

What happened with your son? Did it resolve on its own, or did he

have any treatments? How long did you wait to get a second opinion?

Did your son have an MRI?

> >

> > 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 7, 2008

Thanks for the advice. Glad to hear your son is doing well.

Just a few follow-up questions. Are you also in NYC? Who did you see

at HHS? I am curious. Also, who did you see in Philadelphia?

> > >

> > > 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 8, 2008

Max is currently in his 9th cast and 2 1/2 years old. First casted

at 13 months.

We went for a second, third & fourth opinion. Each doctor giving us

different treatment recommendations.

Max was braced at 6 months and the curve doubled to 54 degrees in

brace wearing it 20 hours/day. They then wanted to do surgery at 13

months.

This took us to the third & fourth opinion. Doctor #4 (current

doctor)wanted to try casting. He wanted to try all options before

putting Max under major surgery at such a young age.

Max's curve is in the lumbar region which is more difficult to

correct with casting. It appears that the thoracic curves respond

best to casting. I may be wrong on this, but this is based on the

stories of those children who have achieved correction.

Max will unfortunately undergo the VEPTR surgery on 3/4/08. We know

we have tried everything to prevent/delay surgery, but the odds are

against us.

The doctors that have casted Max include Dr. Sturm of Shriners

Chicago, Dr. (at the time he was at Shriners Erie, currently

in Rochester I believe?) and Miss Mehta. None of the casts held

after 4 weeks.Casting is not the the answer for every child, but it

is absolutely worth trying (you have nothing to lose.

Yes, Max did have an MRI right away to determine whether it was

congenital. Max does not have congenital scolsios, his is

idiopathic from what we know. Max will have genetic testing to

determine if he has a connetive tissue disorder such as Marfan's

Syndrome during his hospital stay for his surgery.

I hope this helps.

Aekta

> > >

> > > 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

Hi,

Glad to answer any questions. Yes, we live in Queens, NY. The

doctor who treated my son for nearly 4 years was Dr. Kathleen Raggio

of HSS (we saw her at her LI office). I think she was very good

for " typical " scoliosis cases. A lot of her patients were just that -

older kids, particularly teenage girls. I understand she's a very

good surgeon. However, as I mentioned earlier, she wasn't innovative

and all she could offer for a younger child was " brace and hope for

the best " . And if that doesn't work, her next option was growing

rods.

When I found out about stapling (VBS) and brought it to her attention

back in 2003, she wasn't for it. However, when I pushed her as to

why, the only negative thing she could say was that it was not yet

proven.

So, I sought out Dr. Betz and never regretted that decision.

Shriners is SO much better suited to treat the more complex and less

typical scoli cases that Dr. Raggio was. Changing doctors, and

treatment methods, was the best thing we ever did. While none of us

knows what the future will bring, is nearly 4 years post-op and

since he's a 4th grader now, it is a blessing that he doesn't have to

wear that dreaded brace to school

If it can help just one person, there is a great team of doctors at

Shriners in Philadelphia. In addition to Dr. Betz, a lot of folks I

know see Dr. Asghar (I would not be surprised if we hear his name a

lot more in the future - he could be the next " Dr. Betz " in my

opinion). I learned recently that Dr. Asghar also does casting, was

trained by Dr. Mehta and has the proper pediatric frame. Considering

that he perfoms VBS and casting, I think it is safe to say that he's

an innovative doctor who wants to offer his patients more than

bracing or the " wait and see " approach.

Hope this helps.

> > > >

> > > > 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 8, 2008

Thank you for sharing. I need to call our doctor tomorrow and find

out more information about his curve. I dont think it is worthwhile

to see another doctor immediately. They probably wont have any more

answers that our current doctor. I will not agree to wait 4 months

for another check - I think 1 or 2 months would be better. I will

also ask her why she did not suggest an MRI (she diagnosed him with

idiopathic scoliosis based on her exam and the xray).

Thanks again.

> > > > >

> > > > > 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 8, 2008

Did the doctors give you any suggestions for what to do inbetween

treatments? How to hold Max or exercises?

I am sorry to hear the treatments did not work and he needs surgery.

But I wish you all the best.

> > > >

> > > > 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

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