I'm new here, hello to all!

[Guest guest]

Hi folks,

I found this site in my search for help for my 5 year old son, Jordan. We

adopted him at age

3 from Ukraine. He already had a 67 degree & 35 degree letter " S " for a spine.

He's been

under the care of an excellent ortho surgeon who's been casting him (3 months

on/1week

off) for almost 2 years. His spine continues to curve and the surgeon keeps

telling us we're

just buying time until the growing rod surgery. This surgery is risky & scary

as I'm sure you

all know. In September when his last cast came off we took the opportunity to

try a non-

surgical approach using chiropractic methods by the Clear Institute. But even

with the 2

week out of state treatments & the daily regimen at home, his latest x-ray

reveals that the

curve has progressed to 73 degrees. Our doc wants to send us to Children's

Hospital in

Boston so we can get a 2nd opinion, which we know will recommend the surgery

we're

dreading. I'd really like to talk with parents who have gone through the

growing rod surgery.

I found the pictures of the children in their casts very intriguing. Jordan's

casts don't have

the hole cut out for the tummy. I like that idea since his casts tend to

restrict his eating,

breathing, and muscle tone. So, I've learned something already.

Thank you to all, and I can't wait to chat with you.

[Guest guest]

Hi Sondra,

Welcome.

Children's Hospital in Boston is supposed to be a good facility. I

would also highly recommend Shriners Hospital for Children in

Philadelphia. They see cases like Jordan's every day - and they are

using some new techiniques there such as a hybrid growing rod

together with staples, just as an example. They really have a

wonderful team (my son has been going there for over 5 years and

they are EXCELLENT). (Their services are also free of charge so you

literally have nothing to lose by getting a consult there.) If you

would like more info, please let me know, or e-mail me at

mariaf305@..., but the contact person is Janet Cerrone (PA to

the spine team) 1- or janetcerrone@....

Best of luck to you and please keep us posted.

>

> Hi folks,

> I found this site in my search for help for my 5 year old son,

Jordan. We adopted him at age

> 3 from Ukraine. He already had a 67 degree & 35 degree letter " S "

for a spine. He's been

> under the care of an excellent ortho surgeon who's been casting

him (3 months on/1week

> off) for almost 2 years. His spine continues to curve and the

surgeon keeps telling us we're

> just buying time until the growing rod surgery. This surgery is

risky & scary as I'm sure you

> all know. In September when his last cast came off we took the

opportunity to try a non-

> surgical approach using chiropractic methods by the Clear

Institute. But even with the 2

> week out of state treatments & the daily regimen at home, his

latest x-ray reveals that the

> curve has progressed to 73 degrees. Our doc wants to send us to

Children's Hospital in

> Boston so we can get a 2nd opinion, which we know will recommend

the surgery we're

> dreading. I'd really like to talk with parents who have gone

through the growing rod surgery.

>

> I found the pictures of the children in their casts very

intriguing. Jordan's casts don't have

> the hole cut out for the tummy. I like that idea since his casts

tend to restrict his eating,

> breathing, and muscle tone. So, I've learned something already.

>

> Thank you to all, and I can't wait to chat with you.

>

>

[Guest guest]

>

> Hi folks,

> I found this site in my search for help for my 5 year old son,

Jordan. We adopted him at age

> 3 from Ukraine. He already had a 67 degree & 35 degree letter " S "

for a spine. He's been

> under the care of an excellent ortho surgeon who's been casting

him (3 months on/1week

> off) for almost 2 years. His spine continues to curve and the

surgeon keeps telling us we're

> just buying time until the growing rod surgery. This surgery is

risky & scary as I'm sure you

> all know. In September when his last cast came off we took the

opportunity to try a non-

> surgical approach using chiropractic methods by the Clear

Institute. But even with the 2

> week out of state treatments & the daily regimen at home, his

latest x-ray reveals that the

> curve has progressed to 73 degrees. Our doc wants to send us to

Children's Hospital in

> Boston so we can get a 2nd opinion, which we know will recommend

the surgery we're

> dreading. I'd really like to talk with parents who have gone

through the growing rod surgery.

>

> I found the pictures of the children in their casts very

intriguing. Jordan's casts don't have

> the hole cut out for the tummy. I like that idea since his casts

tend to restrict his eating,

> breathing, and muscle tone. So, I've learned something already.

>

> Thank you to all, and I can't wait to chat with you.

>

>Hello ,

Im fairly new here also, but felt compelled to reply to you

especially because you may be seeing the same Dr that we have with

our son Jonas, Dr Karl in Albany. We were told similar to you,

to " cast to buy time for surgery " etc. but we should wait until he

was walking well( our son is 23 months old now, was @ 16 months when

we 1st saw Dr Karl.) After finding this site(wish I found it sooner)

I realize I missed out on some precious time by " waiting " to utilize

the non surgical METHA method, which we now have an appointment for

on 1/21/09. Now in your case from my limited knowledge thus far your

child may be too old at 5, but certainly cant hurt to at least look

into it (contact Dr Rubery in Rochester). In terms of surgical, we

got a 2nd opinion by a specialist in manhattan after dr karl and he

introduced us to a newer surgical procedure done at shriners in

philly known at VEPTR :http://www.veptr.com/

After our research, seemed logical to use this method of anchoring

the adjustable rods to the ribcage/hip vs the spine. He stressed

adjustments are far less invasive to adjust and better for the spine

itself. I suggest looking into these options before making any final

decisions. Hoped this helped. God bless.