Hello, new here. 11 month old son just diagnosed.....need help!

[Guest guest]

Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

[Guest guest]

Hi ! Welcome to the group. You are in the right place! I know this

is a very scary time, but you're taking the right steps. If you would like to

chat, please e-mail me privately with your number and a good time to call. You

can e-mail Hyatt-Montoya privately or go to the ISOP

(www.infantilescoliosis.org) website to request a DVD on Ms. Mehta's casting

technique. My dd had this procedure and is doing quite well. Her 9 month f/u

appt is Fri am actually. This is 9 months completely cast/brace free.

The MRI (usually performed under anesthesia at his age) is essential to

getting a correct diagnosis. Get a copy of the radiology reports and reports to

send to Dr. D'Astous in SLC. You will also need a few other tests before the

casting begins. A renal ultrasound, a slit eye test, & an echocardiogram.

These tests could lead to more, but you need all four before you begin casting

if at all possible.

Please don't worry about questions or length of posts. We have all been

there. This is a great forum to get your questions answered by experienced

parents/care-givers/grandparents. Please feel free to ask away. You can call

me if you would like on my cell at 325-450-4857 after 1000 am tmw (Fri) your

time. I will be making the boring drive back home.

Jen

lvmomtoty <lvmomtoty@...> wrote:

Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

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

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[Guest guest]

Hello

I think that pretty much summed it all up, but I just wanted to email

you and let you know that my son, Evan, was diagnosed at 3m old and is now in

his sixth cast (going for number 7 on Monday) and has corrected his COBB from 46

to 13 degrees and his RVAD has decreased from 64 down to in the 20's!!

Time is essential, esp. since your son is 11m old, he is in the time frame

where he is growing SO rapidly and you don't want to waste any time.

I would get an appointment set up in SLC, go ahead with the MRI and any other

prelim. tests that your docs suggest.

good luck and feel free to email me anytime!

and Evan

lvmomtoty <lvmomtoty@...> wrote:

Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

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

Looking for earth-friendly autos?

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[Guest guest]

One more thing.

If SLC is too booked to see you asap, try Denver Childrens Hospital. The name

of the surgeon practicing early treatment correctly, is Dr. Mark kson. The

# to the ortho dept is, 303 861 6666. Please keep us posted.

Sincerely,

HRH

Hello, new here. 11 month old son just

diagnosed.....need help!

Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

[Guest guest]

,

Sorry I forgot about Dr. kson!!! Glad Denver is getting someone going on

the casting!! We need it there!!!!!!!!!!! West Coast sounds exciting too!!

Shellie

heather hyatt <heather@...> wrote:

One more thing.

If SLC is too booked to see you asap, try Denver Childrens Hospital. The name of

the surgeon practicing early treatment correctly, is Dr. Mark kson. The # to

the ortho dept is, 303 861 6666. Please keep us posted.

Sincerely,

HRH

Hello, new here. 11 month old son just

diagnosed.....need help!

Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

[Guest guest]

Thank you all for the wonderful responses and welcome. I feel so

much better already. Today I am going to start gathering all of my

son's medical records and have another call into the ped for a

referral for a second opinion here in Las Vegas. I am going to

contact SLC and Denver both. I am actually on bedrest right now, I

am 36 weeks pregnant with our third child, a little girl and will

probably be induced at the end of next week. So I would like to get

as much done before she is born as possible.

If I can ask how did you all go about getting all the tests and

referrals done? Was it through your insurance companies, out of

pocket? We don't care how it gets done and we will do whatever it

takes, but our insurance is very strict about having their providers

do all the treatments,tests and referrals, I know there will be a

fight on our hands in that respect.

Again, thank you all so very much. Your children's stories are so

wonderful and I look forward to getting to know you all.

> One more thing.

> If SLC is too booked to see you asap, try Denver Childrens

Hospital. The name of the surgeon practicing early treatment

correctly, is Dr. Mark kson. The # to the ortho dept is, 303 861

6666. Please keep us posted.

>

> Sincerely,

>

> HRH

> Hello, new here. 11 month old son

just diagnosed.....need help!

>

> Hi,

> My name is , we live in Las Vegas, NV and our 11 month

old

> son Matson was just recently diagnosed with infantile scoliosis

with

> a Cobb of 40 degrees. I have been reading through all the posts

and

> our ortho doc never did a RVAD that I know of but did say he

thought

> his curve was not self resolving. His treatment plan is to cast

our

> son to make a ton brace for nighttime wear and a Milkwaukee

> brace for daytime wear. He actually called back today and said

that

> wants to do an MRI (which I had asked him about before and he said

> there was no need), and put him under anesthesia so they can get a

> good casting to make the braces. I am so overwhelmed right now and

> do not know what to do. I have put in a request for a referral for

a

> second opinion, but I do not want to waste anymore time. After

> reading DR. Mehta's article it sounds like time is essential.

>

> Can I contact someone in Salt Lake to get a consult about serial

> casting? It seems as though this is the only method that will

> correct and not just prevent his curve from worsening? The bracing

> will only prevent if what I have been reading is accurate and then

> he will need surgery anyway down the road. I have no idea where to

> turn next? Do I proceed with the MRI and inital casting for the

> bracing? I know the MRI would at least give a more accurate

> depiction of his curve and/or any underlying problems.

>

> I appreciate any and all input or advice, I apologize for the long

> posts and many questions. I am just not sure what to do next? Can

I

> order video on serial casting somewhere as well? We did ask the

> ortho doc about serial casting and he acted like he had no idea

what

> we were talking about...not a good sign I don't think.

>

> Thank you all!

> Sincerely,

> and Matson

>

>

[Guest guest]

,

You are doing great and already really know your stuff. Yes, not a good sign if

the doc hasn't heard of serial casting, although not at all uncommon. Give

Shriner's in Salt Lake a call and the hospital in Denver a call too if they are

booked. Shriner's of course is free treatment, and I'm not sure how payment

works in Denver. Maybe they would bill your insurance company. Otherwise, Erie

is far for you, but another option.

/Cole

lvmomtoty <lvmomtoty@...> wrote: Hi,

My name is , we live in Las Vegas, NV and our 11 month old

son Matson was just recently diagnosed with infantile scoliosis with

a Cobb of 40 degrees. I have been reading through all the posts and

our ortho doc never did a RVAD that I know of but did say he thought

his curve was not self resolving. His treatment plan is to cast our

son to make a ton brace for nighttime wear and a Milkwaukee

brace for daytime wear. He actually called back today and said that

wants to do an MRI (which I had asked him about before and he said

there was no need), and put him under anesthesia so they can get a

good casting to make the braces. I am so overwhelmed right now and

do not know what to do. I have put in a request for a referral for a

second opinion, but I do not want to waste anymore time. After

reading DR. Mehta's article it sounds like time is essential.

Can I contact someone in Salt Lake to get a consult about serial

casting? It seems as though this is the only method that will

correct and not just prevent his curve from worsening? The bracing

will only prevent if what I have been reading is accurate and then

he will need surgery anyway down the road. I have no idea where to

turn next? Do I proceed with the MRI and inital casting for the

bracing? I know the MRI would at least give a more accurate

depiction of his curve and/or any underlying problems.

I appreciate any and all input or advice, I apologize for the long

posts and many questions. I am just not sure what to do next? Can I

order video on serial casting somewhere as well? We did ask the

ortho doc about serial casting and he acted like he had no idea what

we were talking about...not a good sign I don't think.

Thank you all!

Sincerely,

and Matson

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

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with for Mobile. Get started.

[Guest guest]

Like I said in another reply, all Shriner's Hosp. treatment and care is FREE!

I'm not sure how Denver works. So if you go to Shriner's, don't worry about

costs.

lvmomtoty <lvmomtoty@...> wrote: Thank

you all for the wonderful responses and welcome. I feel so

much better already. Today I am going to start gathering all of my

son's medical records and have another call into the ped for a

referral for a second opinion here in Las Vegas. I am going to

contact SLC and Denver both. I am actually on bedrest right now, I

am 36 weeks pregnant with our third child, a little girl and will

probably be induced at the end of next week. So I would like to get

as much done before she is born as possible.

If I can ask how did you all go about getting all the tests and

referrals done? Was it through your insurance companies, out of

pocket? We don't care how it gets done and we will do whatever it

takes, but our insurance is very strict about having their providers

do all the treatments,tests and referrals, I know there will be a

fight on our hands in that respect.

Again, thank you all so very much. Your children's stories are so

wonderful and I look forward to getting to know you all.

> One more thing.

> If SLC is too booked to see you asap, try Denver Childrens

Hospital. The name of the surgeon practicing early treatment

correctly, is Dr. Mark kson. The # to the ortho dept is, 303 861

6666. Please keep us posted.

>

> Sincerely,

>

> HRH

> Hello, new here. 11 month old son

just diagnosed.....need help!

>

> Hi,

> My name is , we live in Las Vegas, NV and our 11 month

old

> son Matson was just recently diagnosed with infantile scoliosis

with

> a Cobb of 40 degrees. I have been reading through all the posts

and

> our ortho doc never did a RVAD that I know of but did say he

thought

> his curve was not self resolving. His treatment plan is to cast

our

> son to make a ton brace for nighttime wear and a Milkwaukee

> brace for daytime wear. He actually called back today and said

that

> wants to do an MRI (which I had asked him about before and he said

> there was no need), and put him under anesthesia so they can get a

> good casting to make the braces. I am so overwhelmed right now and

> do not know what to do. I have put in a request for a referral for

a

> second opinion, but I do not want to waste anymore time. After

> reading DR. Mehta's article it sounds like time is essential.

>

> Can I contact someone in Salt Lake to get a consult about serial

> casting? It seems as though this is the only method that will

> correct and not just prevent his curve from worsening? The bracing

> will only prevent if what I have been reading is accurate and then

> he will need surgery anyway down the road. I have no idea where to

> turn next? Do I proceed with the MRI and inital casting for the

> bracing? I know the MRI would at least give a more accurate

> depiction of his curve and/or any underlying problems.

>

> I appreciate any and all input or advice, I apologize for the long

> posts and many questions. I am just not sure what to do next? Can

I

> order video on serial casting somewhere as well? We did ask the

> ortho doc about serial casting and he acted like he had no idea

what

> we were talking about...not a good sign I don't think.

>

> Thank you all!

> Sincerely,

> and Matson

>

>