Re: Outcome of Holly Jean's first visit to local orthopedist--wait and see

January 19, 2008

It's not an uncommon experience, unfortunately. MOST specialists

think this. This is why precious time is so often lost and then

begins the spiral of surgeries until they stop growing.

Misinformation can sometimes do more harm. It's sad.

I'm glad you were able to go in there with an informed opinion and

hold your own

Good job!!!

Sandi

January 19, 2008

Hi ,

That doc was right in that most of these cases will resolve on their own. They

either resolve or they progress; they don't stay stable. We initially were told

our son's scoli would most likely resolve based on the RVAD measurement.

Our local doc told us the curve was " very high " at 32 degrees, but the RVAD was

" very low " , at 10. The RVAD is the best predictor. Over 20, and they are sure

the scoli is progressive. Under 20, and it will probably resolve on its own.

He advised a recheck in 3 months. Well, 3 months later, we were looking at a

curve of 50 degrees, RVAD 25.5. It did not look as bad from the outside as the

xrays showed, but that was no consolation once we found out it was progressing.

At that point, the decision for us was crystal clear, I can assure you! Our doc

wasted no time then in referring us to Dr. Khoury for treatment. Incidentally,

Dr. Khoury said he would have predicted the curve would resolve, too, based on

the initial RVAD.

I'd say you need to find out the RVAD before making your decision. I completely

understand your wanting to avoid any unneccesary interventions! Hopefully you

will feel more confident about your decision after consulting with Dr. Khoury in

person. Take all your questions--he will give you as much time as you need, and

so will .

Oh, and we were also told by our local doc that we would not need an MRI, but

Dr. Khoury told us all patients starting casting treatment need an MRI to find

or rule out any other treatable conditions. They did it when Todd was under

anesthesia for his first cast.

Good luck and keep us posted.

, Momm to Todd

Outcome of Holly Jean's first visit to local

orthopedist-- " wait and see "

We took Holly (7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

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January 19, 2008

Oh - yeah - the MRI.

In order to know if it is congenital or idiopathic, they have to do an

MRI. It's definitely step 2 (after the initial x-rays).

If it's congenital, and there are wedge vertebrae or a tethered cord

or a host of other things, they may not be able to cast and/or may

need to go a surgical route.

Once that is through, then you can begin looking at other things.

Jack was braced for a couple months (which was very bad for his ribs).

No one had neither heard of nor mentioned RVAD until this group to us

- and we saw a couple local specialists in very well-respected

institutions. It's just so uncommon that people don't know.

The decision for us was made first, when Miss Mehta herself said he

was a good candidate and was very specific about why and not at all

alarmed by his appearance (other doctors were shocked to see a baby

with such an advanced curve). And, second, when we realized that we

would either spend the next year or two doing nothing - watching his

curve progress, compressing his heart and lungs, praying it would

resolve OR we could do this low-intervention non-surgical method of

guaranteeing his lungs would be held open and the pressure would be

relieved inside his body.

But, like I said to someone else last night, it's very much an

individual decision and you have to make the best one you can with the

information you have

S

January 19, 2008

I cannot believe this guy said she doesn't need an MRI. That is just

negligence. She could have a tethered spinal cord. She probably doesn't, but

it has to be ruled out.

Also, " much rotation " is a huge indicator that it will progress.

Lastly, I know I have spoken with about this before, but I really would

like to know how this 80% of Infantile scoliosis resolves by itself has been

determined. There have only been a very few cases of resolving infantile scoli

on this board.

Anyway, I am glad you are seeing Dr. Khoury.

Noelle (12-2-01)

Ian (8-15-04)

Outcome of Holly Jean's first visit to local

orthopedist-- " wait and see "

We took Holly (7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

January 19, 2008

Just my two cents....many docs are trained that the " wait and see " approach is

best. I can see how it is, In the cases that DO resolve on their own.

If Holly is only 7 months old and already has a 36* curve, then I'd want

to follow a little more closely than 3-4 months, I'd atleast ask for an x-ray

after 4-6 weeks.

Some lucky kiddos do resolve, but so many don't...it's a tough call on the

parents part as WHAT is best for your little one.

I could see Evan's curve progressing. We visited 3 different Ped. ortho's in 2

months. We had the MRI, I wanted to rule out any othe abnormalities.

Just b/c its the " NORM " that 85% of cases resolve and have no nerurological

abnormalties, etc, I'd rather be safe than sorry and not lose any time

" waiting " .

I really hope you find someone you feel comfortable with locally or w/ Dr. K.

good luck...Hang in there, I've been there. You can read Evan's story on

ISOP's site.

adn Evan

wrote:

We took Holly (7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

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

Never miss a thing. Make Yahoo your homepage.

January 19, 2008

When we first took my son to see an orthopedic he had a 16 degree curve and a

RVAD of 5 degrees. I had seen the ISOP website before even meeting with the

local ortho, so I knew that the RVAD was a good determiner for whether or not

the scoliosis progressed. The local ortho said that since the RVAD was so low

that we should just get a MRI to rule out any abnormalities of the spine and

wait three months for another x-ray. I was satisfied with that answer since the

RVAD was low and the curve not terribly high, but when we had the MRI done a few

weeks later the radiologist said the curve was 20 degrees. I called the ortho

and he ordered another set of x-rays but told me that MRIs aren't very good for

measuring curves. The x-rays confirmed the curve was 20 degrees though, so he

recommended a ton Bending Brace. I asked about casting and I got the

impression he just thought that was overboard at this point. He thought it was

unnecessary to go through the risk of

anesthesia and mentioned that casting had a possiblity for causing rib

deformities. He seemed confident that the bracing would work. We decided to get

a second opinion from Dr. Sturm while in the meantime going forward with the

brace. We flew up to see Dr. Sturm a few weeks later and his curve was 31

degrees and the RVAD was 16. At first, Dr. Sturm seemed to be leaning towards

wait and see because of the RVAD, but then I showed him the previous x-rays and

how rapidly his curve and RVAD had progressed. He immediately said we should

cast him. I am curious as to why your local ortho was against the casting. Did

he mention any negatives or did he just not think it worked?

wrote:

We took Holly (7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

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

Never miss a thing. Make Yahoo your homepage.

January 19, 2008

Hi ,

the parents have already said everything I wanted to say. Get your questions

ready for DR. K. MRI is a must, RVAD is a must. " casting " is not returning as

the specialist put it. He is thinking Risser casting. Mehta's technique is

different (expansion windows and frequent changes) and so is her approach

(early!) He must not have all the facts yet. Send his contact info to

Hyatt, and she'll be sure to invite him to the next training with Dr. Mehta.

Either that or he can go visit Dr. Sturm in Chicago and see what it is all

about.

Let us know if there is anything else you need.

Shellie Grant

wrote:

We took Holly (7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

January 19, 2008

Hi ,

Just want to share our experience. We initially saw " the best " ortho here in

town. He suggested that Haley's curve would resolve on its own. We did wait

and see. 4 months later we went back and found that it had rapidly progressed.

Not to say Holly Jean's will, but like stated previously, they either get better

or worse...no in betweeen. So, at that point he suggested a MRI to rule out

congenital scoliosis and some other neurological issues. He did Haley's first

two cast (after we received a 2nd opinion from another local ortho that also

suggested casting.) They were the old type of cast (Risser) after 2 casts, her

curve was still progressing. He basically told us at that point, he did not

know what else to try. So, we found Dr. Khoury At our first visit, he told us

that treatment for Haley would be a long road, and that his main concern was the

fact that we had lost so much precious time. Haley was 15 mos when she was seen

by Dr. Khoury. She was 4 months when

we were told to wait and see. I truly feel that if we had gone with this type

of casting (Mehta) when Haley was first diagnosed, we would be straight by now.

If not straight, very close to it. I can't kick myself b/c we thought we were

doing the right thing at the time. When our local ortho said he did not know

what else to do , but continue casting, I was SOOOOOO torn about what to

do...try another one of his cast or go see this Dr. Khoury and try his type of

casting. I knew we had nothing to lose by seeing dr. Khoury. So we did, and

now we are 9 degrees straighter than when we started.

Dr. K did tell us that this type of casting was similar to the risser with A

LOT of modifications.

I would suggest going ahead with your visit to Dr. Khoury and just see what he

thinks. Ask him ANY questions you might have and voice your concerns. I think

a lot of Dr. Khoury and . Keep us Posted. When do you see Dr. K?

Misty and Haley

wrote: We took Holly

(7 months, 36* curve to the right recently

identified on xray) to a local orthopedist today to get an

assessment of her condition. Even though Dr. Khoury looked at her

xrays and said she has a progressive form and needed casting, we

wanted to have someone look at her here. 1) to make sure that she

is generally healthy and 2) to find a local doc who could support

her care.

He said it does not look like she has much rotation (although he

agreed the xray was fuzzy) and that we should wait and see what

happens. He said that 85% of cases of IS get better without

treatment. He said to come back in 3-4 months to see how she is

doing then. He also mentioned a whole bunch of other things about

braces and surgeries, but told us not to get alarmed by what we

might have read about IS. He said we were the 3rd case of IS he had

seen just today and only about 10% of his patients ever need

treatment.

Then I pressed him about predictors. I mentioned some predictors

that i felt were not in her favor (gender, direction of curve,

degree of curve). I also asked him about the RVAD score. It seemed

as though he has heard of it, but couldn't or didn't measure it.

He just didn't want to talk about how to refine general predictions

based on important predictor variables.

When i asked about casting, he said that casting was a old procedure

that has " come back " . But he implied that he didn't believe it was

warranted. Later on he mentioned a surgical procedure involving the

ribs that he said was invented by the Chief at Shriners Hospital

(who he used to work with). Ironically, he was referring to Dr.

Sturm. When i mentioned that Dr. Sturm did early intervention with

casting, he flat out said he disagreed.

OK, so i guess this is not our doc. We still plan to go to

Birmingham to for consult and casting with Dr. Khoury. But this

meeting did add some level of uncertainty, as this doc was fairly

certain that she would get better without treatment.

He also said she doesn't need an MRI.

I realize this is a select group and maybe all of the " wait and see "

kiddos who had positive outcomes wouldn't have parents talking about

casting right now. But how do you decide what to do?

Waiting and seeing seems scary. Putting a child through unnecessary

medical procedures is scary.

sorry for the long post.

(mom to Holly 7 months)

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

January 19, 2008

Shellie is totally right -

Most orthos assume that when you say casting, you mean Risser casting

- very old-school, very much like a brace.

They are not taking into consideration that the key method is this

AMIL table that puts the head and pelvis in traction and allows the

surgeon to manipulate the spine into correction. The cast is simply

the way they hold that correction. It isn't necessarily that the cast

does anything itself - it just holds it the way a doctor re-sets a

broken bone and casts it so that the bone can heal in that position.

The added bonus is that it has cut-outs to prevent the rib deformity

that is so common with bracing and casting babies, you can address the

rotation of the spine not just the curve of the scoliosis, and it

harnesses the force of the baby's own rapid period of growth in a

sense, causing the body to not only hold the correction but sort of

create a model for where the additional inches should go - since it

has to stay within that cast, it will typically just grow upward in

that proper straight line and not curve worse.

Does that help any?

S

January 20, 2008

-

Thanks for your post. I got the sense that the doctor we saw felt

that early casting's " success " was due to capitalizing on the high

rates of resolving IS. When i asked specifically about casting, he

said that if he told me to " plant a tuplip in my garden " that it

would have a 90% success rate in curing the scoliosis. I think what

he is failing to realize, is that there are some good predictors of

resolving versus progressive IS and that doctors who do casting are

looking at these and treating a select group of patients, not

everyone. He said a few other things that were just plain wrong.

He said that most curves are to the right. She doesn't need an MRI.

I don't think he knew what an RVAD score is, etc. I am really

wondering when he last read the literature on IS. I am tempted to

send him some articles. The sad things is that he was highly

recommended to us by another doctor in the area.

We see Dr. Khoury on Jan 30th, with casting scheduled for the 31st.

(mom to Holly 7 mo, IS 36* curve)

> We took Holly (7 months, 36* curve to the right

recently

> identified on xray) to a local orthopedist today to get an

> assessment of her condition. Even though Dr. Khoury looked at her

> xrays and said she has a progressive form and needed casting, we

> wanted to have someone look at her here. 1) to make sure that she

> is generally healthy and 2) to find a local doc who could support

> her care.

>

> He said it does not look like she has much rotation (although he

> agreed the xray was fuzzy) and that we should wait and see what

> happens. He said that 85% of cases of IS get better without

> treatment. He said to come back in 3-4 months to see how she is

> doing then. He also mentioned a whole bunch of other things about

> braces and surgeries, but told us not to get alarmed by what we

> might have read about IS. He said we were the 3rd case of IS he

had

> seen just today and only about 10% of his patients ever need

> treatment.

>

> Then I pressed him about predictors. I mentioned some predictors

> that i felt were not in her favor (gender, direction of curve,

> degree of curve). I also asked him about the RVAD score. It seemed

> as though he has heard of it, but couldn't or didn't measure it.

> He just didn't want to talk about how to refine general

predictions

> based on important predictor variables.

>

> When i asked about casting, he said that casting was a old

procedure

> that has " come back " . But he implied that he didn't believe it was

> warranted. Later on he mentioned a surgical procedure involving

the

> ribs that he said was invented by the Chief at Shriners Hospital

> (who he used to work with). Ironically, he was referring to Dr.

> Sturm. When i mentioned that Dr. Sturm did early intervention with

> casting, he flat out said he disagreed.

>

> OK, so i guess this is not our doc. We still plan to go to

> Birmingham to for consult and casting with Dr. Khoury. But this

> meeting did add some level of uncertainty, as this doc was fairly

> certain that she would get better without treatment.

>

> He also said she doesn't need an MRI.

>

> I realize this is a select group and maybe all of the " wait and

see "

> kiddos who had positive outcomes wouldn't have parents talking

about

> casting right now. But how do you decide what to do?

>

> Waiting and seeing seems scary. Putting a child through

unnecessary

> medical procedures is scary.

>

> sorry for the long post.

>

> (mom to Holly 7 months)

>

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

> Never miss a thing. Make Yahoo your homepage.

>

January 20, 2008

Hi ,

Here's briefly Max's scoliosis experience. Diagnosed at 5 months

with a 27 degree curve tothe left. Doc #1 said wait and see in 6

months with a follow-up x-ray and MRI. Doc #2 said to brace and

immediate MRI. We did at 6 months of age. In 3 months Max's curve

doubled to 54 degrees despite brace woren 20 hours/day-told he had

to have surgery. He was casted at 13 months at 57 degrees with Dr.

Sturm (Doc #4) at Shriner's Chicago and currently in cast #9.

I can't begin to imagine where Max's curve would be today if we did

wait and see in 6 months after first diganosed.

Although casting has not improved Max's scoliosis, I firmly believe

it has helped slow down the progression so he can be older before hs

surgery. There are many positives to casting.

You'll be in great hands with Dr. Khoury.

Wishing you all the best.

Aekta

>

> We took Holly (7 months, 36* curve to the right recently

> identified on xray) to a local orthopedist today to get an

> assessment of her condition. Even though Dr. Khoury looked at her

> xrays and said she has a progressive form and needed casting, we

> wanted to have someone look at her here. 1) to make sure that she

> is generally healthy and 2) to find a local doc who could support

> her care.

>

> He said it does not look like she has much rotation (although he

> agreed the xray was fuzzy) and that we should wait and see what

> happens. He said that 85% of cases of IS get better without

> treatment. He said to come back in 3-4 months to see how she is

> doing then. He also mentioned a whole bunch of other things about

> braces and surgeries, but told us not to get alarmed by what we

> might have read about IS. He said we were the 3rd case of IS he

had

> seen just today and only about 10% of his patients ever need

> treatment.

>

> Then I pressed him about predictors. I mentioned some predictors

> that i felt were not in her favor (gender, direction of curve,

> degree of curve). I also asked him about the RVAD score. It

seemed

> as though he has heard of it, but couldn't or didn't measure it.

> He just didn't want to talk about how to refine general

predictions

> based on important predictor variables.

>

> When i asked about casting, he said that casting was a old

procedure

> that has " come back " . But he implied that he didn't believe it

was

> warranted. Later on he mentioned a surgical procedure involving

the

> ribs that he said was invented by the Chief at Shriners Hospital

> (who he used to work with). Ironically, he was referring to Dr.

> Sturm. When i mentioned that Dr. Sturm did early intervention

with

> casting, he flat out said he disagreed.

>

> OK, so i guess this is not our doc. We still plan to go to

> Birmingham to for consult and casting with Dr. Khoury. But this

> meeting did add some level of uncertainty, as this doc was fairly

> certain that she would get better without treatment.

>

> He also said she doesn't need an MRI.

>

> I realize this is a select group and maybe all of the " wait and

see "

> kiddos who had positive outcomes wouldn't have parents talking

about

> casting right now. But how do you decide what to do?

>

> Waiting and seeing seems scary. Putting a child through

unnecessary

> medical procedures is scary.

>

> sorry for the long post.

>

> (mom to Holly 7 months)

>

January 20, 2008

Hi

All I can tell you is you are in the position alot of us were in.....

the difference between your case and mine is there is an entire bunch

of kids that are having this done while you are deciding.

When my son was diagnosed in 2004 had a 30 degree right thoracic

curve RVAD 25 as I pursued casting (methas paper was not published

yet )so it was hard to get the local orthos opinion on casting.

Anyway I sent my xrays to the 2 docs doing ET and one told me my son

would resolve and to wait the kalubus brace is doing as good as a

cast and the other said lets cast.....needless to say I wasted from

15 months of age to 23 months before we could get him in a cast he

went to 38 degrees ....now 15 standing out and 4 in brace after 2

years of casting with little to no rotation but..... the rotation was

phase 2 before casting which the doctor doing casting noted phase 2

rotation and still said he would resolve......A positive you have is

she is only 7 months of age so waiting 3 months probably wont destroy

your chance of a completely straight spine but you never know. The

casting was not bad and I would find out what the RVAD and Rotation

are. Lastly Dr Khoury REALLY I mean REALLY know his stuff and I would

trust him..

You need an MRI to make sure there are no other reasons for the curve

good luck and please do not wait time is not on your side and luckily

you have alot of mothers and fathers out here that have already been

thru all of this already and can give you advice

good luck and please do not wait time is not on your side and luckliy

you have alot of mother and fathers out here that have already been

thru all of this already and can give you advice. We took

Holly (7 months, 36* curve to the right recently

> identified on xray) to a local orthopedist today to get an

> assessment of her condition. Even though Dr. Khoury looked at her

> xrays and said she has a progressive form and needed casting, we

> wanted to have someone look at her here. 1) to make sure that she

> is generally healthy and 2) to find a local doc who could support

> her care.

>

> He said it does not look like she has much rotation (although he

> agreed the xray was fuzzy) and that we should wait and see what

> happens. He said that 85% of cases of IS get better without

> treatment. He said to come back in 3-4 months to see how she is

> doing then. He also mentioned a whole bunch of other things about

> braces and surgeries, but told us not to get alarmed by what we

> might have read about IS. He said we were the 3rd case of IS he

had

> seen just today and only about 10% of his patients ever need

> treatment.

>

> Then I pressed him about predictors. I mentioned some predictors

> that i felt were not in her favor (gender, direction of curve,

> degree of curve). I also asked him about the RVAD score. It

seemed

> as though he has heard of it, but couldn't or didn't measure it.

> He just didn't want to talk about how to refine general

predictions

> based on important predictor variables.

>

> When i asked about casting, he said that casting was a old

procedure

> that has " come back " . But he implied that he didn't believe it

was

> warranted. Later on he mentioned a surgical procedure involving

the

> ribs that he said was invented by the Chief at Shriners Hospital

> (who he used to work with). Ironically, he was referring to Dr.

> Sturm. When i mentioned that Dr. Sturm did early intervention

with

> casting, he flat out said he disagreed.

>

> OK, so i guess this is not our doc. We still plan to go to

> Birmingham to for consult and casting with Dr. Khoury. But this

> meeting did add some level of uncertainty, as this doc was fairly

> certain that she would get better without treatment.

>

> He also said she doesn't need an MRI.

>

> I realize this is a select group and maybe all of the " wait and

see "

> kiddos who had positive outcomes wouldn't have parents talking

about

> casting right now. But how do you decide what to do?

>

> Waiting and seeing seems scary. Putting a child through

unnecessary

> medical procedures is scary.

>

> sorry for the long post.

>

> (mom to Holly 7 months)

>

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

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

January 20, 2008

Hi

We also were told to " wait and see " those are the words they still

echo in my head. I wish I never heard them, if only I could take back

2 years I would deffinatly do things different.

If you took a poll of the people who were told " wait and see " I think

most would say yes.

Then ask the question of how many curves resolved on their own.

Does anybody know the percentage of curves that resolve on their own.

Our first Dr. told us 90% resolve on their own. So if thats the case

if you have seen 10 kids with Scoliosis 9 would be resolving.

I guess in this forum we are the one in ten as per the Dr.s advice.

At this point I would take the proactive approach get treatment.

Then " wait and see " .

Darrell

We took

> Holly (7 months, 36* curve to the right recently

> > identified on xray) to a local orthopedist today to get an

> > assessment of her condition. Even though Dr. Khoury looked at

her

> > xrays and said she has a progressive form and needed casting, we

> > wanted to have someone look at her here. 1) to make sure that

she

> > is generally healthy and 2) to find a local doc who could

support

> > her care.

> >

> > He said it does not look like she has much rotation (although he

> > agreed the xray was fuzzy) and that we should wait and see what

> > happens. He said that 85% of cases of IS get better without

> > treatment. He said to come back in 3-4 months to see how she is

> > doing then. He also mentioned a whole bunch of other things

about

> > braces and surgeries, but told us not to get alarmed by what we

> > might have read about IS. He said we were the 3rd case of IS he

> had

> > seen just today and only about 10% of his patients ever need

> > treatment.

> >

> > Then I pressed him about predictors. I mentioned some

predictors

> > that i felt were not in her favor (gender, direction of curve,

> > degree of curve). I also asked him about the RVAD score. It

> seemed

> > as though he has heard of it, but couldn't or didn't measure

it.

> > He just didn't want to talk about how to refine general

> predictions

> > based on important predictor variables.

> >

> > When i asked about casting, he said that casting was a old

> procedure

> > that has " come back " . But he implied that he didn't believe it

> was

> > warranted. Later on he mentioned a surgical procedure involving

> the

> > ribs that he said was invented by the Chief at Shriners Hospital

> > (who he used to work with). Ironically, he was referring to Dr.

> > Sturm. When i mentioned that Dr. Sturm did early intervention

> with

> > casting, he flat out said he disagreed.

> >

> > OK, so i guess this is not our doc. We still plan to go to

> > Birmingham to for consult and casting with Dr. Khoury. But this

> > meeting did add some level of uncertainty, as this doc was

fairly

> > certain that she would get better without treatment.

> >

> > He also said she doesn't need an MRI.

> >

> > I realize this is a select group and maybe all of the " wait and

> see "

> > kiddos who had positive outcomes wouldn't have parents talking

> about

> > casting right now. But how do you decide what to do?

> >

> > Waiting and seeing seems scary. Putting a child through

> unnecessary

> > medical procedures is scary.

> >

> > sorry for the long post.

> >

> > (mom to Holly 7 months)

> >

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

> > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile.

> Try it now.

> >

January 20, 2008

I have to say that it is very scary to be told that it will

probly resolve and to wait 3 to 4 months. My son was diagnosed right

after he turned 1yr old. His curve was at 24degrees in December 06'

and we were told that she thought he had a tethered spinal cord. We

had an MRI done in January. They didn't find a tethered cord but

found a brain malformation. He had to see a neurosurgeon for that and

the Orthopedist didn't want to see him again until April. Our

pediatrician didn't like that answer so sent us to the Children's

Hospital in Denver Colorado. They took xrays in March and he had

progressed to 37 degrees. In just 2 and a half months that is a lot.

He had brain surgery the end of March and recieved his first cast in

May. He was well over 40 degrees when he recieved his first cast. His

RVAD was 35 Degrees. He had three different casts and is now in a

brace at 8 degrees. I try and not think what would have happened had

we waited to see what would of happened had we not found a doctor

that does the Mehta style casting. He is now 2 and a half and it

would be to late to start casting, and likely his curve would have

been so high they could not have done anything for him. I would say

with my experience it is Imparitive to have an MRI done. Hope this

helps with your decision. The RVAD is usually the deciding factor if

it will progress or resolve but I do know there are a few parents

that thought there children would resolve and then the RVAD

progressed.

Rochelle mom to Devyn Infatile Scoliosis, Chiari Malformation.

Tiffanni 10yrs, Dominic 7yrs

>

> We took Holly (7 months, 36* curve to the right recently

> identified on xray) to a local orthopedist today to get an

> assessment of her condition. Even though Dr. Khoury looked at her

> xrays and said she has a progressive form and needed casting, we

> wanted to have someone look at her here. 1) to make sure that she

> is generally healthy and 2) to find a local doc who could support

> her care.

>

> He said it does not look like she has much rotation (although he

> agreed the xray was fuzzy) and that we should wait and see what

> happens. He said that 85% of cases of IS get better without

> treatment. He said to come back in 3-4 months to see how she is

> doing then. He also mentioned a whole bunch of other things about

> braces and surgeries, but told us not to get alarmed by what we

> might have read about IS. He said we were the 3rd case of IS he

had

> seen just today and only about 10% of his patients ever need

> treatment.

>

> Then I pressed him about predictors. I mentioned some predictors

> that i felt were not in her favor (gender, direction of curve,

> degree of curve). I also asked him about the RVAD score. It

seemed

> as though he has heard of it, but couldn't or didn't measure it.

> He just didn't want to talk about how to refine general predictions

> based on important predictor variables.

>

> When i asked about casting, he said that casting was a old

procedure

> that has " come back " . But he implied that he didn't believe it was

> warranted. Later on he mentioned a surgical procedure involving the

> ribs that he said was invented by the Chief at Shriners Hospital

> (who he used to work with). Ironically, he was referring to Dr.

> Sturm. When i mentioned that Dr. Sturm did early intervention with

> casting, he flat out said he disagreed.

>

> OK, so i guess this is not our doc. We still plan to go to

> Birmingham to for consult and casting with Dr. Khoury. But this

> meeting did add some level of uncertainty, as this doc was fairly

> certain that she would get better without treatment.

>

> He also said she doesn't need an MRI.

>

> I realize this is a select group and maybe all of the " wait and

see "

> kiddos who had positive outcomes wouldn't have parents talking

about

> casting right now. But how do you decide what to do?

>

> Waiting and seeing seems scary. Putting a child through

unnecessary

> medical procedures is scary.

>

> sorry for the long post.

>

> (mom to Holly 7 months)

>

January 21, 2008

Thank you for all of your helpful responses. Holly had a check up

today with her regular pediatrician. The pediatrician said that she agrees

with our decision to consult/cast with Dr. Khoury 100%. She said if it were

her child, she would seek out the experts in the field and fly anywhere she

needed to. She too was surprised that the orthopedist didn't order an MRI

and felt this was wrong (she had done a little background reading on IS

before we came).

(mom to Holly IS 36* curve to the right)

________________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of dmcmow

Sent: Sunday, January 20, 2008 1:48 PM

To: infantile_scoliosis

Subject: Re: Outcome of Holly Jean's first visit to

local orthopedist-- " wait and see "

Hi

We also were told to " wait and see " those are the words they still

echo in my head. I wish I never heard them, if only I could take back

2 years I would deffinatly do things different.

If you took a poll of the people who were told " wait and see " I think

most would say yes.

Then ask the question of how many curves resolved on their own.

Does anybody know the percentage of curves that resolve on their own.

Our first Dr. told us 90% resolve on their own. So if thats the case

if you have seen 10 kids with Scoliosis 9 would be resolving.

I guess in this forum we are the one in ten as per the Dr.s advice.

At this point I would take the proactive approach get treatment.

Then " wait and see " .

Darrell

We took

> Holly (7 months, 36* curve to the right recently

> > identified on xray) to a local orthopedist today to get an

> > assessment of her condition. Even though Dr. Khoury looked at

her

> > xrays and said she has a progressive form and needed casting, we

> > wanted to have someone look at her here. 1) to make sure that

she

> > is generally healthy and 2) to find a local doc who could

support

> > her care.

> >

> > He said it does not look like she has much rotation (although he

> > agreed the xray was fuzzy) and that we should wait and see what

> > happens. He said that 85% of cases of IS get better without

> > treatment. He said to come back in 3-4 months to see how she is

> > doing then. He also mentioned a whole bunch of other things

about

> > braces and surgeries, but told us not to get alarmed by what we

> > might have read about IS. He said we were the 3rd case of IS he

> had

> > seen just today and only about 10% of his patients ever need

> > treatment.

> >

> > Then I pressed him about predictors. I mentioned some

predictors

> > that i felt were not in her favor (gender, direction of curve,

> > degree of curve). I also asked him about the RVAD score. It

> seemed

> > as though he has heard of it, but couldn't or didn't measure

it.

> > He just didn't want to talk about how to refine general

> predictions

> > based on important predictor variables.

> >

> > When i asked about casting, he said that casting was a old

> procedure

> > that has " come back " . But he implied that he didn't believe it

> was

> > warranted. Later on he mentioned a surgical procedure involving

> the

> > ribs that he said was invented by the Chief at Shriners Hospital

> > (who he used to work with). Ironically, he was referring to Dr.

> > Sturm. When i mentioned that Dr. Sturm did early intervention

> with

> > casting, he flat out said he disagreed.

> >

> > OK, so i guess this is not our doc. We still plan to go to

> > Birmingham to for consult and casting with Dr. Khoury. But this

> > meeting did add some level of uncertainty, as this doc was

fairly

> > certain that she would get better without treatment.

> >

> > He also said she doesn't need an MRI.

> >

> > I realize this is a select group and maybe all of the " wait and

> see "

> > kiddos who had positive outcomes wouldn't have parents talking

> about

> > casting right now. But how do you decide what to do?

> >

> > Waiting and seeing seems scary. Putting a child through

> unnecessary

> > medical procedures is scary.

> >

> > sorry for the long post.

> >

> > (mom to Holly 7 months)

> >

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

> > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile.

> Try it now.

> >

January 21, 2008

,

Just a thought . . . your ped. sounds awesome. Maybe after Holly is

settled into her first cast, offer the DVD and Ms Mehta's aritcle to her. It

would be awesome if she would share it with other Pediatric docs she knows and

help get the word out. Glad to hear she was so receptive and supportive. That

is kind of rare!!

Shellie Grant

no wrote:

Thank you for all of your helpful responses. Holly had a check up

today with her regular pediatrician. The pediatrician said that she agrees

with our decision to consult/cast with Dr. Khoury 100%. She said if it were

her child, she would seek out the experts in the field and fly anywhere she

needed to. She too was surprised that the orthopedist didn't order an MRI

and felt this was wrong (she had done a little background reading on IS

before we came).

(mom to Holly IS 36* curve to the right)

________________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of dmcmow

Sent: Sunday, January 20, 2008 1:48 PM

To: infantile_scoliosis

Subject: Re: Outcome of Holly Jean's first visit to

local orthopedist-- " wait and see "

Hi

We also were told to " wait and see " those are the words they still

echo in my head. I wish I never heard them, if only I could take back

2 years I would deffinatly do things different.

If you took a poll of the people who were told " wait and see " I think

most would say yes.

Then ask the question of how many curves resolved on their own.

Does anybody know the percentage of curves that resolve on their own.

Our first Dr. told us 90% resolve on their own. So if thats the case

if you have seen 10 kids with Scoliosis 9 would be resolving.

I guess in this forum we are the one in ten as per the Dr.s advice.

At this point I would take the proactive approach get treatment.

Then " wait and see " .

Darrell

We took

> Holly (7 months, 36* curve to the right recently

> > identified on xray) to a local orthopedist today to get an

> > assessment of her condition. Even though Dr. Khoury looked at

her

> > xrays and said she has a progressive form and needed casting, we

> > wanted to have someone look at her here. 1) to make sure that

she

> > is generally healthy and 2) to find a local doc who could

support

> > her care.

> >

> > He said it does not look like she has much rotation (although he

> > agreed the xray was fuzzy) and that we should wait and see what

> > happens. He said that 85% of cases of IS get better without

> > treatment. He said to come back in 3-4 months to see how she is

> > doing then. He also mentioned a whole bunch of other things

about

> > braces and surgeries, but told us not to get alarmed by what we

> > might have read about IS. He said we were the 3rd case of IS he

> had

> > seen just today and only about 10% of his patients ever need

> > treatment.

> >

> > Then I pressed him about predictors. I mentioned some

predictors

> > that i felt were not in her favor (gender, direction of curve,

> > degree of curve). I also asked him about the RVAD score. It

> seemed

> > as though he has heard of it, but couldn't or didn't measure

it.

> > He just didn't want to talk about how to refine general

> predictions

> > based on important predictor variables.

> >

> > When i asked about casting, he said that casting was a old

> procedure

> > that has " come back " . But he implied that he didn't believe it

> was

> > warranted. Later on he mentioned a surgical procedure involving

> the

> > ribs that he said was invented by the Chief at Shriners Hospital

> > (who he used to work with). Ironically, he was referring to Dr.

> > Sturm. When i mentioned that Dr. Sturm did early intervention

> with

> > casting, he flat out said he disagreed.

> >

> > OK, so i guess this is not our doc. We still plan to go to

> > Birmingham to for consult and casting with Dr. Khoury. But this

> > meeting did add some level of uncertainty, as this doc was

fairly

> > certain that she would get better without treatment.

> >

> > He also said she doesn't need an MRI.

> >

> > I realize this is a select group and maybe all of the " wait and

> see "

> > kiddos who had positive outcomes wouldn't have parents talking

> about

> > casting right now. But how do you decide what to do?

> >

> > Waiting and seeing seems scary. Putting a child through

> unnecessary

> > medical procedures is scary.

> >

> > sorry for the long post.

> >

> > (mom to Holly 7 months)

> >

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

> > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile.

> Try it now.

> >

January 21, 2008

,

Send him the article and the DVD. He needs to know what this is if he is on

other docs referral lists.

Shellie