Re: New to group. 7 mo old dd dx with idiopathic infantile scoliosis

January 13, 2008

Hi

All I can do is speak from my experiences. When you see your Ortho

make sure you don't take the wait and see approach. We found out at 4

months and were told to wait to see if it progresses in our case that

was wrong. Ask him to get an MRI done to rule out other possible

causes for her scoliosis. Our son was first casted at 12 months he is

now 27 months old 6 casts later.

We live in Canada and He is now being treated at Saltlake Shriners

first cast there for us.

Darrell

>

> I am very grateful to have found this group. My 7 month old daughter

> was just diagnosed this week with idiopathic infantile scoliosis.

> Thank goodness her daycare provider noticed that she had a hump on

> her back. She has reflux and multiple food protein intolerances but

> no other medical problems as far as we know. Her xray revealed a 36

> degree curve to the right. I have read as much as i could the last

> few days on this issue and a number of previous posts on this board.

> I am very interested in finding out if casting would be appropriate

> for my dd. We have an appt in 6 days with an pediatric orthopedic

> surgeon. We live in Northern Virginia/DC.

>

> I have a some questions and would be so grateful for any

> information. 1) What is a RVAD score and how can my dd's be

> determined?; 2) should i already be contacting doctors who do

casting

> (e.g. calling Shriners) or should i wait to see what the local

> orthopedist has to say (i don't want to waste any time!); 3) what

> factors determine if a child is appropriate for casting? what else

> will they need to know about her condition? is is hard to get

> treatment? 4) how long does it take before a child can be casted? So

> far we only have an xray. No MRI or other information.

>

> thank you!

>

> (mom to Holly 7 mo.)

>

January 13, 2008

Hi ,

Holly is such a cute name.

I'm not the expert on here as my son is only in his first cast,

but I'm wondering about this doctor in South Carolina, which might be

an easier drive for you, esp. during the winter. I'm from Virginia

(although now I live in California, and my sister lives in Reston...I

went to school in Fredericksburg). I've heard that he's good, but Dr.

and Dr. Khoury are more experienced. Also, insurance is not

an issue at Shriner's.

What does the group think?

Dr. Stasikelis

Greenville Shriners Hospital

950 West Faris Road

Greenville, SC 29605

Telephone

It takes awhile to get through the appointment desks (you have to push

them a bit), but you really need to start calling these doctors asap

on Monday. It can take 2 months before your first cast because of

schedules, meanwhile Holly could go through a growth spurt. You

should stress that you are considering casting for your child and it's

imperative that you talk to the nurse or medical assistant to the

doctors (get past the appointment desk by telling them that you live

far away and are interested in a treatment that is time-sensitive)!

Make sure you ask about the information required (immunization record,

MRI, x-rays, insurance). For Shriner's, you have to fill out a form

and mail it in to be accepted for treatment...and I think

immunizations now need to be up-to-date.

You are so lucky to have caught scoliosis early, relatively low angle,

and idiopathic. From everything I've heard, that is the best scenario

for getting the best treatment results from the " Mehta " casting

technique.

If you get stuck, just send the group a message. This group is

amazing as they are helping me with 's first cast just put on

last week. We're here for you!

* Lake Elsinore, CA, mom to , 17 m.o. diagnosed with

neuroblastoma at age 2.5 months, status/post 8 cycles chemotherapy and

chest mass excision at San Diego Children's, in remission. Now with

thoracic scoliosis, 63 degrees, T4-T5, kyphosis, rotation (number

unknown), first cast Jan. 8 with Dr. Kishan at Loma .